Survivor Stories

Different stages. Different ages. But all of these women share a common connection of ovarian, fallopian or primary peritoneal cancer.

Read their stories and find encouragement and hope.

Survivor Stories

Barb

Barb

Age at diagnosis: Under 30
Stage at diagnosis: Stage I

My name is Barb, and I have been cancer-free for six years!

I had a very rare type of ovarian cancer called “granulosa cell tumor of the ovaries.” Granulosa cell tumors are usually not found in younger women, and out off all of the women with ovarian cancer, only five percent have this type. This type of cancer cannot be detected by the same blood test as the other ovarian cancers.

Mine is an unusual story, as I actually had the cancer since at least 1993 but was not diagnosed until 2000.

In November 1993, I felt a slight tapping in my abdomen. I thought maybe I was pregnant, so I went to the gynecologist and had an exam and ultrasound. They found a mass on my ovary, and a short while later they did a laparoscopic surgery and sent the specimens to pathology. The results came back negative, and I was told that I had a benign fibroid tumor.

In November 1994, I had the same sensation – just a tapping inside my belly. I had the same procedure, the specimens were sent to pathology. Again they came back negative, and I was told it was just another benign fibroid tumor.

Over the next few years I had similar feelings in my belly, and when I went to the gynecologist, he assured me not to worry. He explained that women get fibroid tumors from time to time and they are not considered dangerous.

By May 1999, I had swelling in my abdomen and occasional cramping. I went to a different gynecologist. I had an ultrasound which showed a large mass on my ovary. At that time the gynecologist suggested that I have surgery to remove the mass and the ovary, if it was necessary.

On my 29th birthday, I was put under. They removed four tumors the size of kiwi fruits and one tumor the size of a cantaloupe from my abdomen. Some of these tumors were on my ovaries and some were on my uterus. The specimens were sent to pathology and again they came back negative, they were considered benign thecomas.

By January 2000, I had severe cramping and went back to the gynecologist. She referred me to an oncologist, even though the previous tests came back negative, just “to be on the safe side.”

In March 2000, I had surgery again. This time, they removed five large masses (again one the size of a cantaloupe), my uterus, appendix, ovaries, tubes, lymph nodes and omentum. The specimens were sent to pathology, along with all of the slides from the previous years’ surgeries. All slides came back positive for granulosa cell tumor of the ovaries.

I was a stage IIIa by the time I was diagnosed. If the pathology department would have correctly diagnosed me in 1993, I would have only been a stage Ia.

During the time I had the cancer and did not know it, I had two children, one boy and one girl. I am thankful for my children, I love them dearly. I worry about their future health sometimes. Since I was pregnant with them and did not know I had cancer, I worry that since the ovary they were born from had cancer, could that have affected them in the long run?

I went through four rounds of chemotherapy. Each round was five days, for about six or seven hours each day.

I also had 12 weeks of radiation, two more surgeries and a blood transfusion. I have been informed that the amount of radiation I had is enough for a lifetime – I cannot have anymore. I received the strongest any one person can have. Not to mention all of the sores, shots in the stomach and medication.

I lost my hair about a week or two after my first round of chemo. I remember clumps of it falling into my hands as I combed my hair. I was very tired and had a real loss of energy for nine months and I lost 35 pounds due to lack of appetite.

I thank my family and friends every day for the support they gave me during my treatment. They drove me to and from treatments, took care of my kids when I could not, brought me food to eat, sent me cards, flowers and books for encouragement, listened to me cry, made me laugh. My sister came over to bake Christmas cookies with me, although I could not even lift my head. She baked them all for me!

My family would hand envelopes of cash to me every so often to help out with the bills since I could not go to work. My brother sent my family on a vacation during the summer. My other brother had a benefit for me in our hometown and raised a few thousand dollars to help pay my medical bills.

I will never forget all of the help, understanding and love I received from everyone. My husband is my strongest support. He keeps me positive, his strength kept me going, especially during those times I just wanted to give up.

Just recently I was diagnosed with lymph edema in my legs. This is swelling in the legs because I had some lymph nodes removed during my treatments. Additionally I have been having difficulties with bowel obstructions. These are very painful and I may eventually have to have some intestines removed that have been damaged by the radiation.

It’s been difficult for me emotionally throughout the years. The first few years, every time I felt the slightest bump in my body, I worried: “Is the cancer back?” Each exam I have had does not go past without much worry and stress, until I get the results.

It is especially difficult for me when I hear of the struggles that other ovarian cancer survivors are enduring. I feel so bad for them, knowing what they are going through. And then worrying about my own health as I think about theirs. I have not had a recurrence, and I pray every day that I never have one. My husband continues to support me when I have my doubts and scares; he walks through every step of the way with me.

If I can deliver one important message to everyone, it would be to listen to your body – and if you feel there is a problem, keep looking for the right answer.

So many times people look for a second opinion when they get a positive test result. Here’s what I say: If a test comes back negative, get a second opinion. We have to be our own advocates, and we have to get the correct results.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Barb M.

Barb M.

Age at diagnosis: Over 50
Stage at diagnosis: Stage I

I am a daughter, a sister, a wife, a mother of four, a grandmother of 9, a child of God — and most recently, an ovarian cancer survivor.

I have joined the sisterhood of ovarian cancer survivors with many other women who have endured the shock of having cancer, battling cancer with the surgeries and chemotherapy treatments and the continual fear of cancer recurring.

However, my cancer journey differs from the stories of so many women. Having spoken to survivors as young as 14 and one who was even pregnant, I share my story so that women of all ages are reminded of how important it is to always be aware of the very subtle warning signs of ovarian cancer.

And if you do experience unusual symptoms, my hope is that you will seek medical consultation even though you might be fearful of the results. Become educated regarding the facts and correct treatment so that unnecessary risks are avoided. Taking these actions offer you the hope of dramatically improving your chances for survival.

And so, my cancer journey begins…I was never sick and so I smugly felt as though, at 59, I had really breezed through menopause.

I was a doctor’s worst nightmare; I didn’t even go in for annual pap smears or mammograms, although my daughter frequently urged me to go. But by the summer of 2004 I began to reconsider her good advice as I was becoming increasingly fatigued, not just tired. I blamed the fatigue on a stressful job and of course, just getting older.

By fall I experienced some heartburn which I had not had since my last pregnancy 30 years ago. I blamed my heartburn on overeating.

And then out of the blue, I had the most unusual, urgent need to run, not just hurry, to the bathroom. Since I couldn’t think of anything on which to blame that symptom, I decided that my body (or was it the voice of God?) must have been signaling me that something was not quite right. Thankfully, I listened.

I went to my family physician on October 27, 2004, for what I expected to be a routine pap smear and a prescription for hormone replacement therapy. Unbeknownst to me at that moment in time, my life and my family’s was about to dramatically change and never to be taken for granted again.

Since I had no knowledge of ovarian cancer facts, I certainly had no idea that my symptoms — fatigue, urgent urination, and indigestion — are indeed some of the classic “silent” signs of ovarian cancer. I did not even get the chance to discuss my symptoms with my doctor because after my pelvic exam, without explanation, I was whisked off for an ultrasound. The ultrasound revealed the presence of a cyst on my left ovary, which was about the size of a large orange.

I was referred to an OB/GYN who confirmed the presence of a suspicious-looking cyst, and for the first time the word cancer was softly whispered… not for sure, but maybe. He advised me that I should be seen by a gynecologic oncologist, but I don’t recall that he explained why, or maybe I just wasn’t listening. All I heard were the words cancer and oncology!

I am not sure how others react to such news. I certainly did not anticipate I would react in the manner in which I did; until then I considered myself a very thoughtful level-headed person, but I became absolutely frantically hysterical. I wanted the cyst removed now, this minute, this second! I could not wait!

I worried how I would go about finding the right doctor, and I was deathly afraid I would have to wait weeks for an appointment. I was afraid that as I waited, the cyst, which I now envisioned to be a ticking time bomb, would rupture and cancer would spread throughout my abdomen. There were too many questions and no answers.

Without understanding the risks, I convinced my OB/GYN to perform the surgery immediately. He reluctantly agreed. He later told my husband that my inconsolable sobbing persuaded him to perform the surgery. In preparation for surgery, blood work was done, but even though ovarian cancer was suspected, a CA-125 blood level was not obtained.

My family physician later told me that he didn’t order the CA-125 blood test because my insurance would not cover the $100 cost, and the clinic wouldn’t pay for it. I wish my doctor would have explained the importance of the CA-125 and given me the option to pay. Had I known then what I know now, I would have gladly paid for the test myself.

I had a laparoscope-assisted vaginal hysterectomy and bilateral salpingo-oophorectomy (removal of uterus, fallopian tubes, and ovaries) the next afternoon. After the surgery, I anxiously awaited the pathology report results, praying no news was good news.

I received the news by a return phone call, and I was so glad I did not have to schedule and anxiously wait for an appointment to hear what I already knew couldn’t be good news. In looking back, however, I would have preferred the personal touch of getting the devastating cancer news from my doctor instead of his assistant: the pathology report confirmed my worst fears…..YES, I did have ovarian cancer, BUT there was good news. My cancer was staged at Ib – primarily in the left ovary with only a 0.4-centimeter follicle in the right ovary.

I owe much of my early-stage cancer diagnosis to my family physician, who detected the enlarged ovary via a pelvic examination, which I have recently heard is not routinely done these days.

I encourage women to request a pelvic exam, CA-125 blood test, and transvaginal ultrasound if experiencing any of the “silent” symptoms for more than three weeks. I am also grateful that during surgery my OB/GYN found no visible signs of cancer in my abdomen and that he took precautions while removing the enlarged ovary during the surgery.

Since ovarian cancer was now confirmed, my OB/GYN referred me to a gynecologic oncologist/surgeon because he was well aware that thoroughly exploring the abdomen and debulking ovarian cancer significantly reduces the risk for recurrence and increases the rate of survival.

Even though I know we discussed the logistics of my case, the surgery, pathology reports and probable cancer treatment was overwhelming. I needed some time to absorb it all and decide, emotionally, how I was going to deal with it.

I had many concerns at that time, but like many others before me, my primal instincts kicked in, and first and foremost I wanted to live. Without knowing ovarian cancer facts, I thought ovarian cancer was always a death sentence. I worried how I would tell the children — and worse yet, my mother? How would I stay positive and upbeat for their sake when my heart was aching?

I still had more fears than calm and more questions than answers. I soon realized that I was not alone in my cancer battle; God was there for me, and so I surrendered myself to his care. I immediately found an unexplainable inner peace knowing he would provide me comfort and strength, as well as continued guidance to my medical team.

I relied on my husband and family for much-needed emotional support, and we vowed that we would fight this cancer battle together, focusing on survival. And so, with my fears finally calmed, I was ready to fight the fight to do whatever it was going to take to live.

Less than one month after my first doctor appointment, I began the treatment phase of my cancer journey. First, the many tests and exams: always the blood work, CAT scans, and chest x-rays. I also had mammograms, an ECG, an echo, and much later a colonoscopy.

Then I met my medical oncologist and gynecologic oncologist — the doctors I prayed were going to save my life.

They were very concerned for me, and even a little frustrated that I had so foolishly put myself at great risk because

  1. I elected to have a vaginal, rather than an abdominal, hysterectomy, meaning that cancer could have spilled or leaked into my abdominal cavity which likely resulted in incorrect staging;
  2. The procedure did not involve a complete exploration or debulking to remove any cancer, and so now additional surgery was required; and
  3. There was no CA-125 report to help determine the extent of my cancer and/or to help monitor my cancer during initial chemo treatment.

Due to my recent hysterectomy, the CAT scan was unreliable for an accurate reading, and it was too soon to have a second surgery. Therefore, the only option was to have three chemotherapy treatments, then the formal exploration and debulking surgery, followed by three more chemo treatments.

Usually, the debulking surgery is followed by the chemo treatments — and in some cases, stage I ovarian cancer does not require six chemo treatments. But because my first surgery was not done by a gynecologic oncologist, for the first time I realized I had unnecessarily put my life at risk.

Chemo treatments were scheduled, and I was relieved that they would soon start attacking any floating microscopic cancer cells. By this time I had finally gotten over the shock of the cancer news and had come to realize that if I was going to get through the treatment phase, I had better stay positive and remember that, by the grace of God and the power of prayer from family and friends, I might have cancer, but cancer does not have me.

I began feeling confident that I could conquer cancer because I was being cared for by a great medical team specializing in ovarian cancer treatment. I can’t emphasize enough how important it has been to me that during such a stressful time my doctors always treated me, the person, and not just the cancer. I would encourage any woman going through cancer treatment to find the doctor that meets both her medical and emotional needs.

And so the chemo treatments began. Even though I was nervous, the chemo treatments were surprisingly uneventful. I was relieved that anti-nausea medication would be administered during treatment and pills provided for me to take at home. And best of all, I got pampered by great nurses and volunteers who were at my beck and call to provide a choice of snacks, beverages, and (best of all) warm blankets and warm smiles.

The standard ovarian cancer chemo drugs — paclitaxel and carboplatin — were administered intravenously. Each treatment took five hours and was given at three-week intervals. After three chemo treatments, I was scheduled for my second surgery.

During my six-hour surgery, I underwent an abdominal exploration with multiple staging biopsies. Fifty-six lymph nodes and the omentum were removed, which I understand are removed as a precaution because they are the normal path in which ovarian cancer progresses.

Following the surgery, my gynecologic oncologist/surgeon and staff excitedly reported that they found absolutely no evidence of any cancer anywhere — and so I was cured! But my medical oncologist, who always keeps me grounded by being forthright and honest regarding my prognosis, has a more conservative view. He continues to be concerned, rightfully so, about the cancer having spilled or leaked during the hysterectomy — and of course, as always, the unpredictability of ovarian cancer recurring.

Even though the surgical procedure was explained to me, I still was very naive about how difficult recovery would be. I worried about whether I would survive the recovery: the pain, the tubes everywhere (including four drain tubes with bottles stitched into my abdomen), the need to sleep on my back (which I never do), the need to cough with 12 inches of stitches from stem to stern, and having to walk laps even when I didn’t feel like it. (Who would guess that walking around the nurse’s station could be as challenging as running a marathon?)

Finally, I returned home. At first it was tough struggling to get out of bed, getting to the sofa and back to the bed again, and still dragging around the drain tubes with bottles that felt like 5 pound weights. My dear husband stepped up to the plate to become my devoted caregiver even though there were many times I was not the perfect patient. I got an enterococcus faecalis infection from one of my drains but not from a perforated bowel as initially suspected, and had to take mega doses of antibiotics. But the human body is a miraculous machine and after only four weeks, my body did heal and I could once again stand up straight. And so it was back to more blood tests, CAT scans, chest x-rays and chemo treatments.

What were the side effects of my chemo treatments? I had the usual bald head, fatigue, nausea, constipation, chemo brain, and a white blood count issue.

What I was not prepared for was the intensity of the severe joint pain I suffered in my lower extremities from my first and second chemo treatments, likely caused by the paclitaxel. I think as a result, I still have mild neuropathy on the bottom of my feet, but consider it a small price to pay for the chemo killing my cancer.

Being bald wasn’t so bad, perhaps because I knew my hair would eventually grow back. I wasn’t the only woman in the world who was or had ever been bald, and I had a great choice of fashionable hats and caps to wear. I saved money on haircuts, hair color, and shampoo, and I saved time on shaving my legs and getting ready to go out! I will admit, though, that once I completed my chemo treatments, I wanted my hair back as soon as possible!

The washed-out fatigue, which usually didn’t hit me until the second day after chemo, involved lots of laying down and napping, having to watch Dr. Phil and Oprah every afternoon, and difficulty going up and down stairs. My energy level usually improved about a week before the next treatment so I planned my life accordingly.

I had the typical chemo brain symptoms: I was unable to concentrate on work or knitting, juggling multiple tasks and not remembering as well as I used to.
An elevated white blood count was noted at my fourth chemo treatment, probably as a result of my postoperative infection. So I got the magic Neulasta shot, which thankfully kept my white count within the normal range so chemo could continue.

My last chemo treatment was on May 4, 2005, and so I officially celebrate being in remission since that date. I even received a “Celebration of Life” pin from the nursing staff to commemorate my last treatment, which I continue to proudly wear along with my teal ovarian cancer awareness ribbon.

After my last chemo treatment, I remember feeling very vulnerable — a little like a baby bird that was being kicked out of the nest for the first time. I was no longer going to have the reassurances that my cancer was being kept off the radar screen, which I had come to rely on for so long, from my doctor, from the blood work, CAT scans and chemo treatments every three weeks.

But after reading on the Internet that such concerns are very common, I quickly moved on to rejoice in living each moment of each day to the fullest.

Even so, my cancer journey is far from over. I must continue to visit my medical oncologist to be sure my cancer has not recurred. I remember going back for my first recheck and being so nervous my palms were sweating, my hands were shaking and I was sure my blood pressure was off the chart. But my medical oncologist, whom I have relied on for both medical and emotional support these past years (so much so that I don’t think I could have made it without him), always came into the examining room with a warm smile and a friendly handshake and put me at ease.

My husband initially went to all my doctor appointments with me, and my doctor patiently listened to both of our concerns, answered all of our many questions, and reassured us that if my cancer recurs he will fight the cancer battle with us as aggressively as possible. And his ovarian cancer research work further reassures me of his commitment to do just that — not just for me, but for all ovarian cancer patients.

Even with all my doctor’s reassurances, I still worry about ovarian cancer recurring, but I do not let it control my life. I am retired now except for a part time job, and so I am enjoying what I like to do best: spending as much time as I can with my youngest grandchildren, gardening, volunteering at church, and representing MOCA at health fairs and talking to doctors and medical students regarding my ovarian cancer experiences.

I rejoice and praise God that as of my last doctor appointment on October 4, 2007, my cancer is still in remission, and I am thrilled that I have graduated to a six-month interval re-check schedule. But of course, I know that I must immediately alert my doctor if I detect any unusual symptoms.

How was it that I was able to transition from a frightened cancer victim to a confident cancer survivor? I certainly did not do it alone. I relied on the help of many others. First and foremost, of course, is my trust and faith in the power of God’s unconditional love and healing care, which has sustained me these many years. Additionally, each one of my wonderful doctors has played such an important role in saving my life. And of course, the love, support and prayers from family and friends and the strength and resolve of other ovarian cancer survivors, with the realization that if they can do it, I can too.

My family and I have learned so much on this twisting, uphill/downhill cancer journey — most astonishingly, that cancer can have a positive influence on our lives. We all learned that cancer is the ultimate wake-up call to live life to the fullest, allowing us the opportunity to stop and smell both the roses and the coffee, and treasuring and finding love and purpose in each day, as if it might be our last.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Barbara

Barbara

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage I

In 2002, I quit my job due to a high stress level at the workplace. Here I was at the age of 48 with an empty nest at home, so I decided to take up quilting, something I’d always thought that I’d do much later in life.

I started by asking advice of an 80-plus-year-old lady friend at church. Her advice: “Start small; do a wall hanging.” So I made a 55-inch square wall hanging (that wasn’t small). I tried several beginners’ projects.

Near the end of 2002, I saw an attractive pattern in a quilting catalog. After the pattern came in the mail, I read the directions and couldn’t really understand them but figured once I got the fabric, cut it and started following the directions, it would flow. After all, I could make a man’s suit from a Vogue pattern. (What I didn’t realize is that quilting is different than being a seamstress.)

I decided that I wanted this quilt to be special. In February 2003, I set out to a quilt shop, 50 miles away. The store was very busy and I must have looked really lost, because I was. I never had problems selecting fabric for an outfit; I didn’t realize I would have problems with selecting quilt fabric. I got my much-needed help.

Finally at home, I washed, pressed, and cut the fabric. I decided that the best way to get started was to be extremely organized. I got out Rubbermaid storage boxes to separate the pieces. I re-read the directions and got started. There were 18.5 yards of fabric that were cut to sew into 284 blocks and 80 different “kinds” of blocks.

I was starting to feel some progress — and then I started to feel like maybe I should start getting out and exercising a little, so I started sewing in my “sweats.” (This was one of the symptoms for what was to come.)

My quilting was interrupted in April during my husband’s time of tests and removal of his gall bladder. I started feeling like I would be next up for a gall bladder surgery; I just couldn’t keep any food down (another symptom of what was to come).

But if I was working on my quilt, I didn’t seem to notice my discomfort of bloating and upset digestion system – although I was sipping one Coke a day and gaining weight! (Another symptom.)

After I took my husband home from the hospital the last day of April 2003, I went to see the doctor. She called a week later and said test results showed I had an ovarian mass (tumor) that was likely ovarian cancer.

I went within the hour to an OB/GYN, who told me I’d be very lucky to see my September birthday, let alone spend another Christmas with my family. She gave me a referral to see the gynecological oncologist.

That appointment was another two weeks away. In the meantime, I had too much time to think. I went to my sewing studio every day and looked at my quilt pieces and the lovely pattern picture. I decided that this would be one of my biggest regrets, my family and friends would grieve, there was nothing I could do for “what ifs” and “should haves,” etc.

But — if I didn’t finish this quilt to leave to my family, it would become a heap of garbage, useless to anyone else. Who would finish my quilt for me? I didn’t think I knew any other quilter well enough to ask them to finish this quilt. My husband would probably throw it out and take my stash to the Goodwill. Quilting was to keep my mind occupied and make the time go easier while I waited.

I started working on the quilt wholeheartedly. We took “one last trip” to see my family for my niece’s wedding. I returned to work on the quilt some more. I had about half of the blocks done by the time I was scheduled to see the oncologist. After arriving home from surgery, I had another two or three weeks to wait for chemo to start — and then the tiredness, achiness, and the hair loss symptoms of chemo were to be fought. I figured every day, I had to work on that quilt to get it finished. My goal was no matter what, at least one block if not an hour of piecing.

There is a symptom called “chemo brain” which seems to be a myth to some, but I suffered from it so that I couldn’t sit and read books. It was extremely difficult, but I couldn’t read a book and realize what I was reading, so it was really hard to read the difficult directions and follow through. Fortunately, I had started before chemo brain could set in, so I was already in the “flow” so I could struggle and work to finish it. I finally finished the top two days after my last chemo. I found a positive direction for my Irish and Swiss stubbornness!

I didn’t have the slightest idea what to do for the backing. I showed the top to a long arm quilter and she asked about the backing. I said, “I think I’ll get some sheeting.” She very sheepishly told me that I shouldn’t. It wouldn’t make her quilting look good; it was hard to quilt through; and it wouldn’t do my hard work, expensive fabric, and the front justice. I haven’t regretted taking that advice at all!

My biggest hurdle for selecting the backing was not just being extremely tired, but also having a terrible ache in my muscles and joints. Being allergic to the medicine for the ache didn’t help.

I had my husband drive me to the quilt shop and I took the top along. With his assistance and a parking space 15 feet from the doorway, I walked in to what looked like an insurmountable task. It wasn’t very busy — only one other customer — but it soon was busy with some very helpful staff and my husband looking for fabric for the back.

Several times I thought the floor was going to go out from underneath me, like quicksand. I had to sit in the “husband chair” several times as they brought or held up bolts. When I was about to give up, I decided that this couldn’t wait. I didn’t know if the chemo would be effective. After all, my husband made a special effort to make the 50-mile trip as my shopping buddy. Plus, the staff at the store was working so hard to find something that would be just right for the backing.
I got out of the chair for the third or fourth or fifth time and walked over to a few bolts. All of a sudden, out this bolt popped into my eyesight! It was THEE one! After over an hour of searching (it actually seemed much longer), I was pleased with the selection!

We took the fabric home. I washed it, cut it and sewed it like the quilt shop person told me to. I took it to the quilter a few days later. I asked if I could get it back so I could bind it by my birthday (three and a half weeks away). She did, but I still wonder how many quilts that were ahead of me in line were bumped out of the way for my cancer quilt. I had my quilt bound by the birthday that I wasn’t supposed to live to see.

As you can tell the date on this story, I lived to make my five-year appointment with the oncologist in July 2008, when I was declared ovarian cancer-free!

We have slept every night under that cancer quilt since I finished the binding by my birthday, September 11, in 2003. I secretly admire the backing every night and pray a prayer of thanksgiving before sleeping under my cancer quilt. I continue to quilt with the inspiration created by my “Celtic Wedding Rings” quilt by Prairie’s Edge Patchworks from Overbrook, Kansas — a.k.a. my cancer quilt.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Carmen

Carmen

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

I’m celebrating my 15th year as an ovarian cancer survivor this year (2014). Experiencing the shock of being diagnosed with cancer has diminished over the years, but its shadow still resides in my mind. Walking (sometimes crawling) the ovarian cancer journey was not always pleasant but my life has been enriched despite the disease.

I had issues for at least a year prior to my diagnosis with intermittent lower abdominal pain. The larger frustration was my ever increasing girth. I had been an avid long distance runner for a long time and was “healthy and fit.” But while still putting in weekly miles that year my waistline kept increasing. My primary physician suggested Milanta for the abdominal pain. It didn’t help. In telling my story, I always include that having been a long distance runner, I could very easily play the mind-over-matter game. A little hitch here, a pain in the knee there… a habit of mind telling body what to do was powerful. Could that have been the beginning of my demise with ovarian cancer?

The intermittent pain was addressed again with my primary physician during my annual exam. She suggested an ultra sound the following week, but I was scheduled for jury duty. After one week of jury duty the pain was no longer intermittent. It was sharp and continuous. My primary ordered a CT scan. A medical staff told me that I had a large ovarian mass and he suspected ovarian cancer. Cancer? I had no family history of cancer. My life was quickly spinning out of control. I was alone when given the shocking news and I sat there in numbness and disbelief trying to decide how I’d break the news to my husband and two adult children. I have a strong faith in God, and it was important for me that other like-minded people would be active in prayer for me and my family. We were embarking on an unwanted, unknown and frightening journey. A quick phone call to a friend began the support that I knew we’d need.

I was immediately transferred from my primary to a gynecologic oncologist, vital for anyone with the disease. I didn’t have time to pick and choose or research the “best” doctors, but I firmly believe that I was gifted with the best fit for me. My doctor’s expertise was surgery. His care translated throughout his medical team. He and his staff made and effort to know me (and I them) beyond medical history and health issues. I’ve never discounted what my gyn/onc could do for me, nor would I ever be disappointed in what I know he cannot do.

Epithelial, stage IIIc ovarian cancer was confirmed that fall of 1999. After a hysterectomy and debulking, I had eight rounds of Taxol and Carboplatin. The typical side effects of the drugs were mostly minimal (nausea, neuropathy, fatigue). However, I wasn’t prepared for the itchy and painful rash that spread over my scalp when my hair was gone. I mourned the loss of my hair, and baldness became the visible sign of the disease. I was counseled to have second look surgery after treatment. At the time it was scheduled, my gyn/onc had his own health issue and it was recommended that I see another doctor for a second opinion. She advised against the surgery, and I felt peace with the decision.

After three years another dark cloud was looming on the horizon. I watched my CA125 go from 5 to 11, 14 and 40 in about 7 months. A PET scan was done with “no significant findings.” And then it struck. This time I was having relentless sharp pain in my upper abdomen. The cancer had returned to my liver in September of 2002. It was fortunate for me that my original doctor was past his health issue and I felt comfortable being back in his care. Taxol only was the treatment plan this time. I endured the same side effects with my scalp.

“Life is a gift.” That’s my mantra, and I’m grateful for the added years to my life since 1999. Currently, my only constant “reminder” of ovca is the lymphedema I developed in my right leg. Long distance running is no longer an option. But I can run a little, walk a lot, swim laps, and bike. God has poured out blessings to me in countless ways – physically, emotionally, and spiritually. I try to maximize each day. Part of the maximizing is culling as much negative from my life as possible, making decisions with thoughtful intention, and “giving back” through volunteer efforts with MOCA.

Molly Cade, a co-founder of MOCA, was my mentor, steering me through a path that she had already walked. She was an amazing woman and a great help to me. I hold MOCA in high esteem, and it’s an honor for me to be actively involved. Through MOCA’s partnership with the University of Minnesota, I’m able to present my story and give ovarian cancer a “face” to students in its medical program – MOCA’s STS program. I’m so thankful for the doctors and researchers who spend their lives looking for an ovca cure. As a survivor, I want to encourage other survivors to dig deep and find inner tools that can be the catalyst for creating new possibilities for themselves despite the disease. Being a resource for other ovca survivors by offering help and hope has added great joy to my life.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Carol

Carol

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

My story begins with a girl’s weekend at our lake cabin in September 2005. Six of us had grown up together in a small town and had started getting together for a weekend once a year.

Earlier that spring, our friend Pat had lost her battle with ovarian cancer, so we were a smaller group that fall. On the Sunday before we left to go home, I was joking with the girls about what my gynecologist was going to say the next morning when I went in for my annual exam.

I was sure he would mention my weight, blood pressure and cholesterol after a weekend of junk food and over-indulgence. Ironically, my doctor said nothing about those things but was concerned that he had felt something on my right ovary that he should not be feeling on a 58-year-old woman.

Even with a very thorough pelvic exam he was unsure of how to write it up in my file without knowing more. He ordered a trans-vaginal ultrasound and a CA125 blood test. The ultrasound did show something and my CA-125 was at 611; well over the normal of 30 or less.

At that point, he explained that it could be something as serious as ovarian cancer and he wanted to me to see a gynecologic oncologist. My doctor planned to see the gynecologic oncologist that evening and would personally ask him to look at my file and consider helping with the surgery. The gynecologic oncologist agreed to see me and I was scheduled for surgery on October 11, 2005 – my 59th birthday. Not what I had expected on my birthday, but I was just glad to be scheduled for surgery.

I had a complete hysterectomy and de-bulking surgery done by a surgeon who knew exactly what he was looking for – removing all visible signs of cancer. I was diagnosed with Stage 3 ovarian cancer. This was very scary for my family knowing that my aunt (not a blood relative) died of ovarian cancer several years ago and my friend Pat had just lost her battle with the very same disease only months before.

Fortunately, I had recently met a woman named Cheryl while painting at the Art Center. She had been diagnosed with early stage ovarian cancer and was now healthy. One of the three women I knew with the disease was still alive and healthy – something to hang on to.

I had a great support system in my husband, three grown children, friends, our church and MOCA. However, even when Doctors do everything right, and so far they absolutely had done a wonderful job of giving me the very best chances of survival, sometimes things go wrong. When my surgery was complete, the surgeon came out to talk to my family who had been there all morning anxiously awaiting news of my condition and asked to have them paged.

We will never know if it was a technical failure or human error, but the pager never went off and my family did not get to talk to the surgeon, who went on to his next surgery when no one responded to the page.

My family couldn’t figure out why they weren’t being paged, so they asked at the desk and found out that I was out of recovery and had been taken to a room. My husband realized it was cancer when the elevator door opened and he saw the sign indicating he was on the cancer floor; the most traumatic moment of his life!

Eventually, he did get an opportunity to speak with my surgeon later that day and my whole family grilled him the next morning in my room with a million questions; which he took the time to answer in detail.

The last day in the hospital, moments before I was released, I discovered a deep vein thrombosis affecting my left leg. They aren’t all that rare in women diagnosed with ovarian cancer following a complete hysterectomy. We had taken precautionary steps to prevent it, but I still had a problem, which complicated my recovery and increased my time in the hospital.

My gynecologic-oncologist recommended an aggressive approach to chemotherapy, suggesting eight treatments of taxol and carboplatin three weeks apart over 6 months rather than the more commonly prescribed 6 treatments.

I got through chemo, tolerating it well and when I finished my last treatment we had a party waiting for me when I returned home to celebrate. However, at my appointment, my Dr. recommended 12 more treatments of taxol given once a month for a year to improve my chances of no reoccurrence or more time before a reoccurrence.

It was hard to hear because I was so glad to be finished and move on. I really didn’t want to face more chemo. He also recommended that my husband and I discuss it, think about a second opinion and was up front about saying that others would not all agree with his recommendation. I liked my doctor, had confidence in him and trusted his opinion. I decided to try the 12 treatments; I could always quit if it was too difficult. I completed the 12 treatments.

I have now begun my 10th year as a survivor with no recurrence and my CA125 remains low. I still go in regularly to be checked for any sign of cancer. I am grateful that I always had annual exams and didn’t wait for obvious symptoms. I did not make a doctor appointment because I identified symptoms, but because it was time for my annual exam.

I was fortunate to have had very thorough, knowledgeable and compassionate doctors who did everything right to increase my chances of survival. Although, there are subtle symptoms that may point to ovarian cancer, they also are symptoms that can easily be mistaken for something else or simply the aging process, as in my case.

I was middle aged, past menopause, all my friends took more trips to the bathroom, had gained some weight around the middle and I had been diagnosed with diverticulitis two years prior, so I attributed any intestinal irregularities to that. As far as I was concerned, I had no symptoms or complaints when I went in for my annual exam.

I am one of the fortunate survivors who had doctors who made all the right choices. My gynecologist was thorough and made exactly the right decisions in ordering the ultrasound and blood test, referring me to a gynecologic-oncologist to perform my surgery and not waiting a year to see if what he may have felt was actually something.

I was blessed with support from a loving family, friends, a church home and MOCA. At MOCA, I found others who could give me hope, had a common purpose and knew what I was experiencing.

I am able to contribute to the mission of MOCA in a variety of ways: sharing my story with medical students, sharing my love of parades with a MOCA float, reproducing my art onto note cards to benefit MOCA, helping out at health fairs, attending events and contributing financially. Sharing with others in the mission of MOCA has been such a positive experience. I was elected to the Board of Directors, served as Vice President and have just finished my second year as President.

From the time of diagnosis, my husband would continue to remind me that someone beat the odds and survived every cancer we know of and if someone can beat it – why shouldn’t that someone be me? I am a person of faith and shared my journey with my faith community. The outpouring of support and the power of prayer was also very important in my healing and recovery. And it doesn’t hurt to believe in miracles!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.  

Chris

Chris

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage I

I was diagnosed in April of 1998 at age 37. I’m happy to say that I am coming up on 16 years as an ovarian cancer survivor this year. I am married with two boys, ages 22 and 19 now. I have no identifiable risk factors.

In January 1998, I noticed that I had been having some heavy periods, and upon further thought realized I had been bleeding off and on for a few months. I went to my family doctor in late January. He examined me and did a pregnancy test when he found that my uterus seemed to be enlarged. When that came back negative, he said he thought I had uterine fibroids and referred me to an OB/GYN. He recommended that I have a transvaginal ultrasound to confirm the diagnosis.

I saw the OB/GYN in February and he agreed with the uterine fibroid diagnosis, but he said I didn’t need an ultrasound since he was so confident. We talked about options to deal with uterine fibroids. After I had a very painful episode on March 1 (intense pain on my left side that would not subside for over an hour) we decided on a laproscopically-assisted vaginal hysterectomy.

Shortly afterward, my abdomen started swelling substantially, and I was in increasing pain. I had night sweats and fever, and a vacation at the end of March almost ended at the emergency room when I passed out in a hotel room from a distinct, severe pain again on the left side of my abdomen. I called the OB/GYN, who was sympathetic but told me that fibroid tumors often had these symptoms if they outgrew their blood supply quickly and/or twisted and that it probably meant we needed to proceed with surgery as soon as possible.

When I returned from vacation I insisted on a transvaginal ultrasound. The OB/GYN complied and did one himself, saying that although he could see a healthy-looking right ovary, he couldn’t see my left one. He assumed that it was obscured by the fibroids in my uterus.
I was uncomfortable with this answer and asked if it could be cancer, but he said he was 99 percent sure it was not. Since the surgery was already scheduled for a couple weeks later, I didn’t press.

When I went back to my family doctor for a pre-op physical the week before surgery, he got very upset. I was barely able to walk upright due to abdominal pain and swelling and he sent me back to the OB/GYN that day for an urgent consult. My family doctor said I appeared to be full of fluid and he did not think a laproscopic procedure was appropriate.

At the consult the OB/GYN agreed, but he recommended we keep the original surgery date of five days later since it was the Easter weekend. He sent me home with Darvocet for pain.

After surgery I woke up to a stage Ic diagnosis – epithelial adenocarcinoma of the left ovary. The tumor was 17 centimeters at its greatest dimension, extensively necrotic, apparently encapsulated, but with malignant cells in the washings. My uterus and right ovary were normal. The medical oncologist that was called in the day after surgery ordered a CA-125, which came in at 34. He recommended starting chemo in 5-6 weeks.

I went to a gynecological oncologist for a second opinion and ended up undergoing six rounds of carboplatin/taxol after the doctor recommended that I be treated as a stage III case because of inadequate staging surgery.

I was a wreck not knowing if I had stage I or stage III disease, and I still worry about my chances of recurrence. However, I tolerated chemo just fine physically and mentally with a lot of family, friend, and coworker support and have never regretted taking an aggressive approach to chemotherapy.

I had a second look surgery in November of 1998 with no evidence of disease. I had two more CT scans since finishing treatment in the first couple of years as well, all clean. My CA-125 tests have all been in the 5-8 range.

Looking back, I wish I had known to ask for a gynecological oncologist referral when my symptoms got worse so rapidly and certainly when my ultrasound answers were not satisfying. I feel lucky that I had attention-getting symptoms and a family doctor who took them seriously.

I have some mild neuropathy and have struggled over the years with hormone replacement therapy options, but I currently take a low-dose synthetic estrogen that works for me. Not surprisingly, I also live with mild anxiety that has me worrying about every little abdominal twinge, lump and bump.

My advice to any woman with abdominal symptoms is to not give up asking questions until answers are satisfactory. My request of doctors is to listen carefully and test thoroughly, and to refer to a gynecological oncologist if cancer is suspected. In addition to better outcomes, it would have helped alleviate my anxiety about staging and made it easier to evaluate treatment options.

I’m really glad to be here to tell my story. Thanks for listening!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Ellen

Ellen

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage III

My name is Ellen Kleinbaum. As of 2014, I am an 25-year survivor of ovarian cancer. I am so pleased to be here and to share my story with you.

I am a walker. I love to walk around the lakes. During the summer of 1991, I noticed that while walking around Lake Calhoun, I would have to stop and use the outhouse, which was unusual for me.

I also had a brief twinge of pain once in a while. We all do, so I was not concerned. Even so, I went to see my gynecologist a month earlier than my scheduled annual checkup. He put his hand on my stomach and remarked that he would think I was pregnant if he didn’t know better. (He had done a tubal ligation on me 15 years earlier.)

He scheduled an ultrasound for me a few days later because during the pelvic exam he felt a mass pressing on my bladder. He couldn’t tell where the mass was attached but said even if it is on the ovary, there was only a 15 percent chance that it would be cancerous. He also scheduled me for a hysterectomy the next week.

The doctor, not my gynecologist, was in the room during my ultrasound, and he was not reassuring. When I asked him if he could tell where it was attached and if the surgery would be a bikini incision or up and down, he snapped at me that I should really be worrying about the mass, not the scar. I went home in tears!

I was confident, however, that it was not cancerous. I felt great and told people at work I would be back in four weeks – and on July 29, 1991, I checked into the hospital for the hysterectomy.

Imagine my shock when I woke up and my family was standing around my bed crying. I had stage IIIc ovarian cancer. I was very lucky that my gynecologist acted quickly. My gynecologist, who had delivered 2 of my 3 children, was visibly upset when he explained my diagnosis to me. He recommended a gynecologic oncologist who I went to see shortly after getting out of the hospital.

I had many new decisions to make. Should I be part of a clinical trial? Should I have a “Groshong line,” a main line surgically implanted for chemo delivery? I decided against the trial because one possible arm was disturbing: It would have involved chemo delivered right into the peritoneal cavity through a shunt. I did have a Groshong line, and that was a good decision.

As a single parent of three children, I faced many challenges. Doctor appointments became a huge part of my life. I had a new network of very important people in my life – a great team of medical and professional staff encouraging me through six months of cisplaten and cytoxin chemotherapy and a few complications along the way.

I developed a systemic infection that put me in the hospital off and on for nearly the entire month of December. Chemo was followed by a second-look surgery and the good news was that the biopsies were negative.

I was offered the opportunity to have an additional treatment, P32, a radioactive fluid, injected into my peritoneal cavity. After much internal debate, I agreed to have it, as I believed this would be an extra insurance policy. After being injected with the fluid they put me in a bed and for a few hours we did what is called “rock and roll.” They changed my position every half hour – head up, head down, right side, left side – all the while I watched movies. The purpose was to swish the fluid around and coat my entire peritoneal cavity. I did very well for the next year and a half after that.

At a three-month checkup, during the pelvic exam, I saw the doctor’s face change and I knew good news was not going to follow. I recurred in the fall of 1993. This resulted in having my third surgery, followed by three treatments of carboplatin and taxol. (Taxol was not offered when I was diagnosed because it was still in the experimental stage.) I regained my strength and was again back in remission.

At the time, I was the human resources manager for a Kinko’s copy center. I was at one of our stores in the fall of 1994 when I began bleeding. Knowing this was not a good sign, I immediately called my clinic and went in for a biopsy. Sure enough, I recurred once again.

I had six courses of carboplatin and taxol. My last treatment was in March of 1995. So far, I am still in remission, and life is wonderful!

About four years ago I went through genetic testing and discovered that I am BRCA2 positive. I was expecting a positive result, since my dad’s sister died of ovarian cancer, and by all other standards, I should have been low risk. I had three children, had been on birth control pills, and was only 42 years old when diagnosed. Even so, I was surprised at my reaction when the counselor slid the paperwork in front of me.

The statistics are overwhelming. I have an 84 percent higher chance of having breast cancer and a 27 percent higher chance of having ovarian cancer than other women. I already had ovarian, so the breast cancer risk was daunting. A prophylactic double mastectomy was suggested. I have opted not to do that at this time. Instead, I have both a breast MRI and a mammogram every year.

I did the testing for the sake of my daughters. As they are still having families, they have not yet chosen to be tested. I would like to see them be tested right away.

My being here today is nothing short of a miracle! I have been able to witness so many milestones, including the marriages of 2 of my 3 children, the birth of 3 granddaughters and recently the first grandson.

You are probably all wondering what my secret is to being a miracle. I’ve given this a lot of thought, and here’s what I believe to be the major factors.

  1. My gynecologist acted quickly. The time I visited him to my hysterectomy (my first surgery) was only a total of two weeks.
  2. My gynecologist recommended a gynecologic oncologist immediately and stressed how important it was to see a specialist. I was treated very aggressively.
  3. Treatment from 1991 to 1993 changed quite drastically. I tolerated it better thanks to new drugs that fight nausea. My body responded to the chemo, and it worked for me.

New drugs are being developed as we speak. It is the research and development that gives us the best chance of survival. My children and grandchildren are relying on us for their future. And so are yours.

Throughout the many stresses of facing cancer, I could always rely on the patience and understanding of the nurses and doctors. Even though they had huge numbers of patients they were helping, I never felt rushed or neglected. They listened to my concerns, answered my questions, helped me make tough decisions, and always had a smile for me. They gave me the courage I needed during such a difficult time.

I have a very wonderful life since cancer. I’ve been to Israel five times. My most recent trip was a trip to China in May 2007. Of course, I still worry about another recurrence and I worry about my daughters and granddaughters. Still, I make every attempt to live life to the fullest.

Because of the dedication of MOCA and its supporters and the doctors who are doing the research, we can beat this disease. It’s the research that is going to make a difference. Thank you!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Harlie

Harlie

Age at diagnosis: Under 30
Stage at diagnosis: Stage III

NOTE: This story was written by Jayne, Harlie’s mother.

My husband and I have been I have been married for 23 years. We have three beautiful daughters, ages 13, 12 and 7. We are your typical busy family that, for the most part, has been pretty healthy. Doctor visits, for all of us, have been few and far between.

November 12, 2013 is a day that will be forever etched into our minds. Arriving at the ER at 6:00 a.m., I was determined to find the answers to the abdominal pain that my 7-year-old daughter Harlie was experiencing.

This was the third doctor visit in 11 days. Other off and on symptoms that were mixed into the equation were fever, cough, runny nose, constipation, diarrhea and throwing up. The only constant symptom was abdominal/pelvic pain, which seemed to get worse with increased activity. I was so sure this was a case of appendicitis. After the initial examination and a normal urine and white blood cell count, the doctor ordered an x-ray and CT scan.

At 10:00 a.m., the x-ray and CT scan were performed and I was promised they would be read right away.

At 10:45, the doctor entered the room with the results. It was not appendicitis, which I already determined it had to be. He went on to tell me that they found a very large mass. The mass was so large that it covered most of the pelvic cavity. I was stunned and numb; I was in a state of shock. From that point I heard about every fourth or fifth word. Two words I did hear were ovary and Fargo.

Tears began to fall, I kept thinking to myself, this is much too young, it can’t be. Then, I heard, “Mommy why are you crying?” My daughter, sick and in pain, was lying on the examination bed. I then had to explain to her that she has a large bump in her belly and we needed to figure what it was and how to get rid of it. The closest pediatric oncologist was in Fargo, which is three and a half hours away. We were told to go home, pack and go immediately to Fargo as they were waiting for us.

On November 13, 2013 a biopsy was done. We were told that our 7-year-old daughter, Harlie, had germ cell ovarian cancer and it had spread to some lymph nodes.

Nothing in life prepares you for that moment when a doctor tells you that your child has cancer. Our family is not immune to cancer, as both my husband’s father and my father have battled cancer. And heck, if the doctor would have told me it was me that had cancer, I could understand. But why a 7-year-old? Life is just not fair.

On November 14th, 2013, our daughter had surgery to remove the tumor and her left ovary. They also installed a port into her shoulder so she could receive chemotherapy. The surgery removed about 90% of the cancer. In the subsequent months she had three chemo treatments. A second surgery was performed in February 2014 to remove some residual spots that were questionable. The spots were biopsied and on February 20, 2014 we were told our daughter, Harlie, was cancer free!

Since her diagnosis, we’ve been involved with MOCA and have taken part in health fairs in our area and HOM Teal Strides for Ovarian Cancer, which was an amazing way to connect with other survivors.

We are so focused on spreading awareness about ovarian cancer. Although ovarian cancer is rare at age 7, it doesn’t matter if you are 10, 20, 30, 40 or 50: the symptoms are the same.  Everyone should know them.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.  

Julie

Julie

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

My story is much like any ovarian cancer survivor, with opaque symptoms that I attributed to other things.  Sure, I was bloated and my abdomen was getting larger, but I had just gone through menopause and isn’t that what happens?  Sure, I had lower back pain, but I’m gaining weight and wasn’t it to be expected? Sure, I was hot all the time, but maybe I just need hormone replacement.

Believe it or not, it was the least obvious symptom that drove me to call my doctor – being hot all the time.  Going in to my general practitioner I thought I would walk out with some form of hormone replacement, but instead I had an appointment for a vaginal ultrasound.

We talked about my symptoms and she did an exam.  While she was feeling my abdomen I will never forget her turning her head to me and saying, “I feel something, it could be ovarian cancer.”  Of course I was scared, but thought it couldn’t be possible; there wasn’t any history of any cancer in my family.  The reality was, however, in the back of my mind I knew something was wrong; I felt it.

So a week later I was having the pelvic sonogram.  I had had sonograms with both of my children and for a previous cyst, but this time it seemed to take a long time.  The technician was taking a lot of pictures and doing a lot of measuring. I knew this was not good.  The very same afternoon my doctor called to tell me she thought I had ovarian cancer, but more tests were needed.

I immediately called my husband, too shocked to even cry, and went in to my doctor’s office to have a full blood panel and CA-125 test done.  The next day I was in for a CT scan which further confirmed the diagnosis and three days later had a PET scan done.  One week after my ultrasound I was in the gynecologic oncologist’s office.

The PET scan confirmed that it was most likely cancer, but my gynecologic oncologist said we wouldn’t know for sure until after surgery.  The doctor started to ask if I wanted to just remove the ovaries, if possible, or have a full hysterectomy, but before he could finish I said, “Take it all!”  I didn’t want any possibility to have cancer anywhere after the surgery.  I told him that if I don’t need it to live, take it.  He is known for being an aggressive surgeon which was a perfect fit for me since I wanted to attack this disease with everything possible.  A mere three weeks after my initial diagnosis I was having surgery.

Surgery was scheduled for May 2012 and I was eager to have it done.  I wanted this unwelcome enemy out of my body so I could do what was next to attack this cancer head-on.  Heading into surgery I was nervous, but the doctor was very reassuring and having my husband there with me, holding my hand, made me much calmer than I would have been otherwise.

The surgery was successful and when I woke up my husband said they were able to get it all out.  There were tumors on both ovaries, the omentum, in the pelvis and a resection of my colon was necessary as one of the tumors on the ovary was lying on the colon. I was staged at 3B. Relief washed over me as I found out that the lymph nodes were not involved and were clean.

The next five days in the hospital were tough and recovery was not easy.  Nurses encouraged me to walk every day and I did, with their help, even though it was the last thing I felt like doing.  I will never forget going for my first walk with the nurse after surgery and seeing the sign “Oncology Unit” on the wall.  I thought they had placed me on the wrong floor and it hit me hard when I realized that I was right where I belonged.  It was at that moment that I first came to grips that I have cancer.

The next month is a bit of a blur recovering from surgery (the hardest part being the colon resection), post-op appointment, chemo class, PET scan and surgery to have a port put in to receive chemo.  Then, the last Friday in June, was my first chemotherapy of Taxol and Carboplatin.  I was so nervous, but ready to begin attacking any possible lurking cancer cells.  The first week after chemo was always the toughest with side effects of horrible aches and extreme fatigue.  My bowels didn’t work properly for a few months and it was truly the hardest part of the recovery.  With each chemo it was harder and harder to bounce back, but the worst of it never lasted more than a week.

After 6 treatments of chemo my PET scan showed no evidence of disease.  I was thrilled, but also anxious about what came next.  My safety blanket – chemo – was gone and now I felt like cancer was free to just come roaring back.  After meeting my gynecologic oncologist’s physician’s assistant, I decided I would try maintenance chemo and Avastin in hopes that if there were any lingering microscopic cells that we would get them all.  Beginning January 2013, I started getting Taxol and Avastin once a month and received a total of 12 treatments of Taxol and Avastin with an additional 12 treatments of Avastin only.

It has been six months since my last treatment and after two years of chemo I am glad to be done.  Recovery is slow and I tend to be impatient so learning to live within my limits is something new for me.  Fatigue is my biggest problem and I am realizing I have to be patient with myself and take it one day at a time.

Without a doubt, one of the best things I did is attend a MOCA support meeting.  I met other women and found a sisterhood of women who are the only ones who can truly understand what I am going through.  After one of the MOCA support group meetings a few of us survivors decided we wanted to get together again soon and we met for coffee a couple weeks later.  We enjoyed our time spent together so much that we decided we would do get togethers every month; and in January 2013, Chemo Chicks was born.  We have since grown into a group of over 30 women from all walks of life, in all stages of the cancer journey, but we have one thing in common (okay, two if you count ovarian cancer) – we love to laugh and have fun.

Things I have learned through my ovarian cancer journey:

  • I am stronger than I ever thought
  • It’s okay to have a pity party – but only 5 minutes a day
  • Finding other survivors has made the world of difference to my emotional health and attitude
  • My husband never ceases to amaze me and has been by my side every step of the way, through the good, the bad and the very ugly

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Karen

Karen

Age at diagnosis: Under 30
Stage at diagnosis: Stage I

My journey with ovarian cancer started more than 40 years ago when I was a freshman in college. Even though my actual surgery was long ago, all of the events are still so vivid in my mind.

During one spring break in college, I experienced a pain in my side that didn’t seem to go away. When I returned to campus after the break, I went to see the college physician about the pain, and he did a blood test to first check if I had appendicitis. Of course, I didn’t.

Over the next four years, the pain would come and go. I had what I called “gall bladder attacks,” which seemed to occur after I went skiing or did any other physical activity. I would get so sick that I stayed in bed for hours unable to move. My stomach would swell up and feel bloated, and I would be extremely nauseous.

During those four years, I went to different doctors trying to find out what was wrong. Each doctor conducted upper GI tests, which always came back negative. All the doctors seemed to believe I was a hypochondriac, but I always knew something was seriously wrong. Through all this I never had any problems with my periods.

By the time I was a senior in college, I was sick much more of the time. I would often faint from the pain. I finally went to the hospital emergency room when I got violently sick after taking a nasty fall while downhill skiing. The emergency room physician realized I was really sick, and for the first time, my doctor realized something was wrong with me. I stayed in the hospital for a week of tests, and they decided I should have my gall bladder removed.

The surgeon scheduled to do the surgery, however, thought I should wait. I will always be grateful to him. He was very kind and was truly interested in me, both as a person and as a patient. I believe it’s because he had four daughters himself.

Through a pelvic exam, my doctor felt a mass on my right ovary. When I finally did have surgery, I had what was described as a multi-lateral malignant tumor on my right ovary, with small tumors and cists on my left ovary. As a result, I had a complete hysterectomy. I had just turned 22 years old.

Since my treatment, there have been great medical improvements, and doctors are being trained to listen more to their patients. I truly believe that had this occurred to me today, then my ovarian cancer would have been diagnosed much earlier.

What I learned through this experience is that you need to take complete responsibility for your own health care. Just because a physician tells you what you want to hear doesn’t mean you should accept the diagnosis if you still feel something is wrong. Women know their bodies and must trust themselves when they think something is wrong.

As a result of this experience, my life has taken a drastically different turn. Because of my hysterectomy, I wasn’t able to have my own children and never married. I have traveled the world and have done a lot of volunteer work with children and adults who have had bone marrow transplants at the University of Minnesota. In the 1980s I started volunteering at the Ronald McDonald House. I felt this strong need as a cancer survivor to offer my time and energy to other cancer patients.

Then, in 1989, I became involved with a program through the University called Care Partners. It was as though God had given me this gift to work with these families. I have helped over 25 families from throughout the United States, as well as Canada, Malaysia, Greece, Bolivia, and Liberia.

Being a cancer survivor, I feel that I can communicate more easily with these families and that they trust and feel more comfortable with me. Often in volunteer situations, it is the volunteer who feels so blessed, and I have always felt this to be the case.

You always tell yourself something happens for a reason, but for the longest time, I couldn’t find a reason for being diagnosed with ovarian cancer at such a young age. Now later in life, I think the reason is perhaps because I am able to help out all these other people whose lives have been devastated with this thing called cancer.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Kathi

Kathi

Age at diagnosis: Over 50
Stage at diagnosis: Stage IV

I’m a fairly avid bicyclist and, in the winter/early spring of 2015, I was training in preparation for riding my fourth RABRAI (a week-long bicycle ride across the state of Iowa). I had developed a cough that I just couldn’t seem to shake. So, in January I made an appointment to see a doctor. Unfortunately, my primary care physician had recently left her practice so I saw a new doctor. As I was otherwise physically fit and wasn’t experiencing any other symptoms, I was prescribed an antibiotic and some steroids to reduce inflammation. This treatment helped initially but in March, the cough returned and I began experiencing shortness of breath. In hindsight, I was experiencing all of the classic symptoms of ovarian cancer but did not attribute the bloating, fatigue and frequent urination to cancer. I just thought I was getting old!

As I was still searching for a new primary care physician, I decided to make an appointment with a different doctor to once again try to figure out what was going on with the cough. This time I was sent for a chest x-ray. I could tell by the look on her face that the results alarmed her and I was sent directly to the local ER. My right lung wasn’t visible on the x-ray due to the amount of fluid in my chest. I was sent for a CT in the emergency room and was shocked when the doctor came in with the results; “It appears that you have ovarian cancer”. My first thought – “You have GOT to be kidding me.” Followed closely by – “Am I going to die?” I barely heard the doctor continue with, “This isn’t the death sentence it used to be. Treatment has improved over the last couple of years.” My CA-125 was over 4000.

I was admitted to the hospital and met with an oncologist the next morning. She explained that I would need surgery and it would need to be performed by a gynecologic oncologist. I actually feel very fortunate that my local hospital did not have one on staff! I was released from the hospital later that day and had the opportunity to go home and think about who and where I would like to have this procedure.

I’m just going to admit it. I’m a researcher and I love Google. This is where you go when you have questions right? By the time I heard, “Don’t spend time on Google”, it was too late. Now my mind was spinning and it felt like my world was coming apart. Thankfully, I have a wonderful family and supportive friends that assisted me in making the decision that was right for me.

Thankfully my surgery went well although the staging surprised me. (Stage 4a due to the fluid in my chest testing positive for cancer cells.) Dense dose chemotherapy was recommended after surgery. I did 18 weeks of chemo (carboplatin and taxol) completing treatment on Aug. 28, 2015. I try not to dwell too much on this rather grueling six months. I just kept looking forward although there were difficult days. I remember telling myself. “You might be dying, but NOT today!” The desire to live each day to the fullest was, and is, a great motivator for me.

I was fortunate enough to come through treatment, reach NED and be accepted into a two-year phase 1 vaccine trial designed to prevent a recurrence. Recurrence of this disease is always in the back of my mind so the daily battle is now more mental than physical. I will be completing the trial soon and remain hopeful that it will provide a new treatment option for women. Thankfully I feel great and hope to ride RAGBRAI again soon!

Kathy

Kathy

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

Life often throws one a curve ball. That is exactly what happened to me and my family on May 5, 2011.

I had not been feeling well for several months early in 2011: fatigue, low appetite, bloated stomach and pain in my left side. I ended up with bronchitis and was put on an antibiotic. Shortly after being exposed to strep, I was given another antibiotic.

By March I was not better. So my internist started me on a string of blood tests, thinking I had an intestinal problem. By May, we still had no answers. On May 5, I woke up in great pain. My husband brought me to the emergency room, hoping to finally find out what was wrong. Hours later, after a CT scan, the doctor came in with surreal news: ovarian cancer.

My husband and I sat there, shocked. I was not a likely candidate for ovarian cancer. I did not have any of the likely factors. It could not be true.

I was admitted to the oncology floor and was told I would be put in touch with an oncologist the next day.

I truly believe my guardian angel was delivered me to in the form of my gynecologic oncologist the next morning. He was completely booked, but agreed to see me between other patients. Looking over my CT scan and my CA-125 results (which was only at 59), he wasn’t convinced I had cancer. So we decided to do exploratory surgery and find out for sure.

On May 17, 2011, the worst was confirmed. I did indeed have ovarian cancer, stage IIIC. My doctor did a complete debulking hysterectomy and put in an IP port which was to be part of my chemotherapy treatment. An IV would be put in later. He told my family he had good and bad news. The bad was that I had ovarian cancer; the good was that I was in the top 20% of successful debulking surgeries. But chemo would still be necessary.

Three weeks later I started chemo. As part of a study I qualified for, I had six cycles of Carbo/Taxol with 22 Avastin treatments added over a 15 month period. This was the hardest time of my life. Sick from surgery and then having poison put in me was not easy. I lost 28 pounds in three to four weeks. Hair loss was the least of my side effects. I developed an infection on my entire scalp that looked like acne; it was so painful I could not put my head on a pillow for two weeks. And I had all the other typical problems. Avastin brought all sorts of other issues: high blood pressure, arthritis, risk of kidney and colon problems to name a few. Eventually I got back to “normal.”

Today I am almost three and half years as a NED (no evidence of disease), with no recurrences. I now go in for a CT scan and a CA-125 every six months. Each time that my appointment gets closer, I get very scared but also very grateful.

I have learned a lot about myself through this journey. I thought a cancer diagnosis was a death sentence, but instead, it is a reawakening. I take pleasure in things I once took for granted. My family has always been a priority, but now we are even stronger together. Instead of putting off things, we are proactive. Vacations, spending time with my five grandchildren and more time at the lake now fill my life. And the new friends I have made because of it are truly gifts… thank you, Chemo Chicks!

I would not wish ovarian cancer on anyone. It is what you do with your life after that that defines you as a person. I will not let it direct my life, but rather enrich it with my newfound strength.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.  

 

 

Kippy

Kippy

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage II

It came as a surprise; it usually does. I am a tour director and was scheduled to take a group to California in two days when I started experiencing discomfort that I thought was indigestion. My mother, a retired nurse, suggested that I see a doctor before I leave — and follow up for further treatment, if necessary, when I come home.

No problem getting in to see the doctor on Thursday afternoon. He started with the usual questions, along with the poking and prodding. He finished all of this with the suggestion that I get a CAT scan. And so it began…

The doctor called me at home that night (yes, you read that correctly, at night, and at home). The results of the CAT scan indicated a large mass on my ovary. He recommended that I cancel my trip and come in the next morning for additional consultation with a gynecologic oncologist.

I saw the oncologist the next day and a whirlwind of appointments, surgery, and acute anxiety started in rapid succession.

I was in a state of shock. Cancer. It brings all kinds of terrible thoughts. It can be a death sentence.

How could this happen? I am in good physical shape. I have watched my diet. I exercise, and I don’t smoke. Why is this happening to me? What did I do to deserve this? I cried. Self pity set in.

Friends and family surrounded me with love and support. If I have learned one thing from this ordeal, it is that the only things that really matter in this world are faith, family, and friends. As I struggled to understand and deal with all that was happening, it was the conversations and tears that we shared that kept me going.

My surgery occurred within a week of the diagnosis. I had what I describe as a hysterectomy on steroids — all things that are removed during a normal hysterectomy, plus a few other organs due to the cancer. After surgery, the oncologist said I had stage II cancer and that the cancer appeared to be contained within the tumor.

I was not completely awake and out of the anesthesia, but this registered with me. I remember smiling (don’t know if I actually did, but it felt like I did). My husband and parents were at my bedside, and we were all relieved that the cancer had not spread.

Our happiness, however, was short lived. I also remember that the doctor said that they always biopsy surrounding tissue in the event that there are any microscopic cancer cells. So when the doctor came back the next day with the news that three small cells had been found on my lymph nodes, the nightmare began anew.

Thoughts of death and chemotherapy started to consume me. I cried again.

The proscribed chemotherapy protocol was a newer one — one that they’d had good success with. I was told that there was a 75 to 80 percent chance of getting into remission with completion of all sessions. But I was also told that approximately 40 percent of patients who start this protocol are unable to complete it because it is so aggressive: six sessions consisting of three treatments each (one intravenous injection and 2 injections directly into the stomach cavity).

Preparation for treatment — implanting the ports for administration of the drugs — started after I left the hospital, and my first treatment occurred within two weeks of the surgery.

Somewhere between my first and second treatment, self-pity was replaced with self-preservation and determination. It quickly became clear that this was going to be very difficult, and it would take all that I had. I was determined to complete all sessions.

I jokingly told my husband that the next six months were going to be all about me, and they were. I forced myself to eat when I had no appetite. Food tasted terrible; I sucked on mints and lemon-drop candy to suppress the metallic taste in my mouth. I walked and exercised when I had the energy but no inclination. I focused on my body to understand reactions to the many medications. I concentrated on my medications to take them at the right time to ward off nausea and pain. I ate bran flakes to fight off constipation. And the list goes on.

And so my life progressed — day by day, week by week, month by month, always focused on getting to the other side. The other side meant an end to the chemotherapy, the return of my appetite, and most off all, spring and all that spring brings: new beginnings.

It was also between my first and second treatments that I started losing my hair. Hair loss is the most obvious sign of cancer and a constant reminder that it is a life-threatening disease. I thought I was prepared, having purchased several scarves and a wig. But like so many other things, preparation doesn’t always allow one to deal with reality when it arrives.

It started slowly; a few strands in my brush soon became handfuls of hair. And although the hair loss started slowly, the decision to shave my head came quickly. I couldn’t handle the slow, tortuous process of watching it fall out. It was time.

I made an appointment and later that same morning, I went in to the salon, my scarf in my purse. The stylist (recommended to me by the woman who sold me the wig and scarves) had a private work area, a good sense of humor and a box of Kleenex. I couldn’t watch so I kept my eyes looking downward.

When he finished, I looked up and stared into the mirror not knowing whether to laugh or cry — so I did both. I felt a terrible loss, but I was relieved that this step was over. As I put on my pink scarf, I remember what a good friend told me — “It’s your badge of courage, wear it with honor.” So I held my head high as I left. I knew that I was going to earn this badge of courage.

That night, I took off my scarf and got into bed to watch the news before turning out the light. Mozart, our yellow lab, loves to sleep in our bed. I heard her coming upstairs and as she jumped onto the bed, she immediately froze, staring at me. Her body tensed, the fur on her back rose, and she slowly leaned forward. She didn’t recognize me!

I laughed and called her name, coaxing her to come. She slowly approached. What stranger was in her master’s bed? As she came near, she put her nose to my head and sniffed from one end to the other. I’m not sure what was going on in that little brain of hers, but she finally did process that it was me — and proceeded to lick my head!

Ah, Mozart — just thinking about her brings a smile to my face. We call her our “therapy” dog because she’s been such a great support through this whole affair.

The last two sessions were tough. I was anxious to complete my treatment and move on to whatever lay ahead. When friends or family members asked how I was doing, I replied that I was going to finish, that it wouldn’t be pretty, and I’d crawl to the finish if necessary. Well, I was right. It wasn’t pretty and I limped over the finish line; I finally completed the regimen on February 3. I had made it to the other side.

I am now in a state of remission and relieved that the treatments are over. I know that I reacted quickly and well to the chemotherapy, but I have asked very few questions about the prognosis. I have no control over what might happen and have, therefore, chosen to live each day to the fullest. Besides, I didn’t go through the hell of chemotherapy to waste my future away!

When this ordeal started, I kept my focus on the other side and the new beginning I hoped it would bring. How fortunate I am to have this opportunity now in front of me. It is spring here in Minnesota and when I look outside, there is renewal all around — grass and flower sprouts and buds on the trees. When I look in the mirror, I see my own spring and renewal — hair growth on my head, my eyebrows and my eyelashes, and hope for the future. It is a new me.

My story ends with my reintroduction to God. Most people diagnosed with cancer turn to their religion for support, and I am no different.

I was raised in the Catholic Church but as an adult, I have not attended church regularly. During my chemotherapy “recovery” weeks, I started attending the very short 8:15 a.m. mass at the nearby Catholic church where I was married. The people at this early service are elderly and are regular attendees. When I started going to mass it was difficult, and I cried through the service, not knowing how to pray or what to pray for.

It was after mass in late October when I experienced a life-changing event, one that helped me cope with this new challenge I’d been given. As I was leaving church, tears still falling onto my cheeks, I heard a voice behind me: “I’m a cancer survivor.” I turned around and an older woman approached me, and said: “You have to believe, and you have to pray.” As I nodded, unable to speak, she again said: “You have to believe, and you have to pray.” She then asked me my name and said “Kippy, I will pray for you.” I remember thanking her. l didn’t even ask her name; I have never seen her since.

As I continue to re-establish myself with God and my religion, I often think of her message. I have found peace within and understand what to pray for — not a healing but the strength to handle what has been given to me and to remind me that there is life after death. I now know why I was so focused on the other side — it would be a time of new beginnings both inside and out.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Kristen

Kristen

Age at diagnosis: Under 30
Stage at diagnosis: Stage I

In the spring of 1997, I began having pains in my abdomen. These pains were like no other stomach ache or cramp I had ever felt in my young 17 years.

My dad had recently been diagnosed with bladder cancer, and I thought my pains could be an ulcer caused by worrying about him. For that reason, I did not want to tell my parents. I did not want them to worry about me; he was going through enough already.

Soon to follow, I began gaining weight quickly and it appeared as though this weight was only going to my stomach area. As odd as it may sound, I did not associate the pain with the weight gain.

My junior prom approached and I could barely fit into the dress I had bought only two months prior. I broke the zipper and ripped the seams. Finally, the following Wednesday I told my mom I really thought I should go to the doctor. Since it is unlike me to make such a request, my mom knew something was wrong and got me into see the family doctor that afternoon.

As my doctor asked me questions, he insisted I was pregnant. After I assured him that that was not possible, he did an x-ray which showed a number of dark spots. My doctor was puzzled and repeatedly asked me if I had eaten anything out of the ordinary that day and if I was certain I had taken all metal off my body before the x-ray.

He then did a pap smear, which at the age of 17 was terrifying, never had having one before and being thrown into it. He concluded that I had an ovarian cyst and told me not to be alarmed, as they are very common.

My mom, having my dad’s situation constantly in mind, specifically asked if it could be cancer. My doctor laughed and said, “No.” He ordered an ultrasound and said if it was smaller than a grapefruit we could treat it with medication, but if it was larger, then I would need to have surgery to remove it.

Two days later I had my ultrasound, which showed this “cyst” to be the size of a football. My dreaded surgery was scheduled for Tuesday, four days later. My doctor explained to me that I would have to miss my prom for fear of this huge cyst popping. When I told him it had been the previous weekend and that I had already gone, he said it was a miracle that this cyst hadn’t popped!

From that Wednesday through the weekend, my pain and abdomen size intensified so much that I became restricted. I couldn’t sit, stand, or lay. It all hurt too much. By Sunday, which ironically was Mother’s Day, I looked like a nine-month-pregnant teen about to give birth.

Because this “cyst” was growing so rapidly, they admitted me into surgery right away Monday morning, the same day that my dad had his first cancer treatment. A gynecologist performed my surgery, in which she was given a surprise when she realized this so-called “cyst” was indeed a tumor. My family was told there was an unexpected occurrence and that surgery would be a while longer.

My doctor carefully removed this large 15-pound tumor, which was growing on my right ovary and expanded across, connecting to my left ovary. In addition to the tumor, she also removed my right ovary and fallopian tube, lymph nodes, and some surrounding tissue. I remember immediately after waking up from surgery having the sensation of my stomach being gone and empty, sunken in.

One of the two oncologists in my North Dakota hometown was assigned to me and worked directly with my gynecologist to treat me. I had a second opinion at the University of Minnesota, where they agreed with my doctors’ protocol of diagnosing this malignant endodermal sinus tumor and the need for chemotherapy.

I underwent a summer of intense chemotherapy, in which I received three three-week cycles of three drugs: Bleomyacin, Cysplatnum, and Etopacide. I would receive outpatient treatments the first week from 8 a.m. to 4 p.m., Monday through Friday, and the following two weeks only on Mondays.

In surgery, the doctors did an alpha-feta protein cancer marker blood test, which came to a count of over 1,200, under 15 being normal. After surgery that count was cut in half, and for the most part I continued to respond well to the chemo, bringing my cancer markers down with almost each treatment.

Like most cancer patients, I had many setbacks and suffered many side effects from chemotherapy, including hair loss, mouth and throat sores, dark skin discoloration, seizure-like symptoms from Compazine, an anti-nausea medication, and the development of Reynaud’s Syndrome, a circulatory condition that I will have all my life (but believe that is a small price to have had to pay).

Losing my hair was not too hard for me because my friends and family constantly made a joke of it. My sister would always bring me new hats and bandanas. My uncle bought me a shirt that said, “With a body like this, who needs hair!” My brother would even draw life-like faces on the back of my head! To me all these were better than wearing a wig!

After being cancer-free for 13 years, I currently receive my checkups once a year, which still come with fear and worry. I am confident, though, that with my thorough checkups, if anything were to come up again, it would be caught early.

Like so many other young survivors I have met, I was told I was too young for this to happen, which was neither comforting nor true. Not only were we told this by our friends, families, and communities, but also by our doctors. The reality is a woman of any age is able to get ovarian cancer. Looking back, I am fortunate to have had symptoms strong enough to lead me directly to surgery resulting in my diagnosis. If it had not been for that, I may have been misdiagnosed numerous times like so many other women.

The biggest challenge for me would have to be not knowing whether or not I can have children. The uncertainty is just a strange feeling. I still have one ovary but the intense chemo I received can critically affect the chances of bearing children. At the same time cancer has shaped me to be who I am today. Being diagnosed so young and surviving has shaped my choices in life and has brought me more positives then negatives.

My biggest successes would have to be the fulfillment of sharing my story with others, spreading awareness, giving hope to others who haven’t known anyone to survive 13 years, and the connections I have made with people.

I learned about MOCA after I graduated in 2002 in Fargo and had moved down to Minneapolis with my sister. We moved into the Linden Hills neighborhood a few blocks away from our new favorite coffee shop, Turtle Bread.

One day, we were leaving Turtle Bread when my sister noticed a flyer advertising MOCA’s third annual Walk/Run, specifically for ovarian cancer. I was so excited and insisted that we had to go. My sister wanted to do some research to make sure it was a legit nonprofit, but I said I’m going!

My best and biggest memory would have to be that first year at the Walk/Run, when Molly Cade came running up to me and gave me a big hug. She said, “come meet everyone!” I remember meeting and hugging so many people, thinking that everyone was so kind, loving, and welcoming. I have been attending the Walk/Run since then every year with my sister. We try and get more and more people to go every year.

As horrible as this disease is, I would never trade my experience. That is starting to sound like a cliché coming from survivors, but it is true. In addition to bringing my family closer together and my Christian faith stronger, my experience allowed me to meet so many amazing people that I otherwise would never have met, and it also guided me to a career choice of public health education.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Laura

Laura

Age at diagnosis: Under 30
Stage at diagnosis: Stage II

Sometimes I wear a piece of jewelry that I call my “cancer in the family” awareness bracelet. On this charm bracelet is a teal ribbon, the awareness symbol for ovarian cancer – that represents me. There’s a gray ribbon for brain cancer, which claimed my father in 1998 at the age of 56. My maternal grandmother survived colon cancer in 1956 and lived to be almost 90 at the time of her death in 2003, and she’s represented with a dark blue ribbon. The most recent addition is a light blue ribbon for my father-in-law, a prostate cancer survivor.

Cancer is one unpredictable disease. I’ve been one of the lucky ones – lucky that I was diagnosed at an early stage and lucky that since diagnosis, I’ve had no complications and no recurrences.

I was diagnosed with stage 2b ovarian cancer in June of 2000, at the age of 28. My story started in January of 2000 when I had a routine physical. The doctor, a general practitioner, discovered a cyst on my right ovary and referred me to a gynecologist. After watching the 5.5-centimeter cyst for a few months to see if it would go away on its own (it didn’t), he wanted to remove it even though he figured at my age it wasn’t causing any problems. I certainly wasn’t exhibiting any symptoms of ovarian cancer.

About a week before my laparoscopy to remove the cyst, he ordered a CA-125 blood test, which is one tool used to help make a diagnosis of ovarian cancer. However, it must be used in combination with other clinical findings (symptoms, transvaginal ultrasounds, CT scans, surgery, etc.) in order to make a definitive diagnosis. Unfortunately, the CA-125 is not an effective screening tool, which is why so many women do not know they have ovarian cancer until it is in its later stages. A CA-125 reading below 32 is considered normal; mine was 26.

Unfortunately, the CA-125 test is at best about 80 percent accurate, and obviously in my case it was not. I also had a transvaginal ultrasound which did not show anything conclusive other than that the cyst had a solid component to it, which could also have been caused by a benign condition. These things, in conjunction with my age and otherwise good health, led the gynecologist to believe this cyst was nothing serious.

I had my laparoscopy on a Wednesday. The surgery went fine, and the gynecologist told my husband and mom afterwards that everything looked normal. He’d found a smaller cyst on my left ovary and removed that as well. Because the doctor was leaving the following Monday for a three-week trip to Germany, he called me on Friday evening.
At first I thought he was just checking in before his vacation, but I knew something was wrong when he waited for my husband to pick up another phone before he started saying anything about the pathology results.

Learning that I had ovarian cancer was as much of a shock for my doctor as it was for me and my family. As the doctor said: “I about fell off my chair when I got the pathology report.” But he had been down this path with other patients before; he had already set up an appointment for me for the following Monday with a gynecologic oncologist, someone who specializes in treating gynecologic cancers.

I didn’t know it at the time, but studies have shown that women who have their tumors debulked (surgically reduced) by a gynecologic oncologist have longer time of survival. By being aggressive in treating what looked like a simple cyst and getting me to the appropriate specialist, I believe this gynecologist saved my life.

Over the weekend, the proverbial “longest weekend of my life,” I started looking on the Internet for information about ovarian cancer. I caution everyone to be very careful if you do this. Ovarian cancer is the deadliest gynecologic cancer, and the statistics are not encouraging. But everyone’s body handles diseases differently. Statistics are just numbers – they’re not rules that dictate the outcome for cancer survivors.

For a while, I would get so scared and upset that I thought my husband was going to set the parental controls on the computer to keep me from getting to some of the sites! When I saw the gynecologic oncologist on Monday, she even said that the pictures taken during my laparoscopy looked normal. This was yet another indicator of me having cancer but seeming to be normal and physically well. I latched onto this and kept the faith that I was going to be OK.

I had the option of only having my ovaries removed, thus possibly still being able to have children someday using donor eggs. However, my husband and I had already discussed the possibility that I may have to have a hysterectomy, and we knew that if doing so gave me the best chance to survive, then that’s what we were going to do. Still, it was difficult to hear that it was the safest course, and I think it was also difficult for my oncologist to have to tell this 28-year-old woman that her best chance for survival was to give up her fertility.

Three days after meeting with her, I had the hysterectomy. All of a sudden I was in surgically-induced menopause. I had my first hot flash within hours after waking up from surgery. Ugh! I was always the one with the cold hands and multiple layers on. Not anymore! But I remember getting the good news that my cancer was Stage 2 and that the gynecologic oncologist had been able to remove all visible disease during surgery.

Surgery was followed by six rounds of Taxol and carboplatin, the “gold standard” of chemotherapy for ovarian cancer. Even though I had no visible disease, the cancer had previously spread outside of my ovary so chemo was recommended to ensure that any loose cancer cells were taken care of.

At one point a co-worker asked me to describe the chemo fatigue. The best description I could come up with was that not only was I so physically fatigued that no sitting or sleeping position was comfortable, I was so mentally fatigued that I couldn’t even watch a TV show because it took too much energy to follow the story line. This was hard for me, a diehard Law & Order fan!

I recalled a story my mom told me when my dad was undergoing chemotherapy for his brain tumor. She would overhear the staff at the front desk at the cancer center mentioning patients who didn’t show up for chemo that day. I couldn’t understand why they didn’t show up; I thought to myself. “Don’t they realize they need this to survive?” But after getting chemo myself, I understood. I did find that every treatment got a little easier for me. The fatigue became more manageable and the nausea was quickly relieved by anti-nausea medication.

As of November 2005, I have been “discharged” by my gynecologic oncologist and am back to having annual checkups with a regular doctor.

I was very lucky to have actually had an end to my treatment; many women don’t. The warrior-women who stay on chemo for years to keep ovarian cancer at bay are amazing. I got involved with MOCA shortly after finishing my chemo in November of 2000, which is how I met many of these great women. I served on the MOCA Board for two years, including one year as president, and I co-chaired the walk/run for two years.

Currently I chair the registration committee for the walk/run, am involved with the Young Survivors group, and volunteer on a few projects. I have celebrated remissions and lost friends whom I cared deeply about. That latter list is much too long, and it is for them that we will all continue to fight ovarian cancer.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Linda

Linda

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage I

My story begins in Oct. 2004, and it is a bit unusual in that I was diagnosed in the Emergency Department of the hospital where I was employed. As I was getting ready for work one day, the pain in my right lower quadrant was so sharp it took my breath away. I had noticed a small bulge in my groin, and had just seen my internist about this a few days prior. She confirmed what I suspected; this was an inguinal hernia and I should see a surgeon.

But on that morning, by the time I walked from the parking lot to the hospital entrance, the pain was intense and I went directly to the ED. The physician asked how long I had had abdominal swelling, and I explained this was from uterine fibroids, I had just seen my MD and she put me back on the pill for heavy bleeding. As a nurse, I had always been diligent about screenings and exams due to my family history of cancer. 15 months prior I had a transvaginal ultra sound and a normal pap smear. But this MD didn’t seem to think this could be fibroids. He sent me for a CT scan. My immediate thought was, “Now? I have a meeting at 7:30”

30 minutes later he told me a mass was seen, it appeared original site was the right ovary. The so called inguinal hernia was there because the mass was pushing down on my GI tract. The mass needed to come out. He wanted a gynecological oncologist to see me, and he wanted to admit me to the hospital. My head swirled. I looked the picture of health. I had a very busy life, and I thought to myself I cannot possibly have a mass that you think is malignant. My clinical background was all in cardiac care, so I was not well versed in this world of gynecological oncology. I was only in my 40’s, and while I had never given birth, I had been on oral contraceptives. My father died of an astrocytoma at age 40, and mother died of colon cancer at age 60. There was no gynecological cancer in the family. I had no urinary or bowel symptoms, just that abdominal swelling.

I filled out admission paperwork, I cancelled meetings, and I tried to be a good patient. I signed consent for a total abdominal hysterectomy, bilateral salpingoophorectomy and exploratory laparotomy only after much soul searching. Certainly, if there was cancer, I wanted everything out, but if there wasn’t a malignancy, I asked that something be salvaged. 46 seemed a bit young to enter menopause cold turkey. My labs were all normal, but a CA 125, a test I had never heard of, came back elevated at 299.

Two days later I got the word. Ovarian cancer, stage 1C, grade 1 and a separate endometrial adenocarcinoma stage 1B, grade 1. All 21 lymph nodes negative. It took sometime to process this information. It is very painful to sob with a fresh abdominal incision, but the emotion had to be expressed. I stared at the pathology report many times. That was my name, my social security number, I knew the pathologist who interpreted the specimens and he was excellent. I had to come to grips with the fact that that mass had come out of me.

Chemotherapy followed with the standard taxol and carboplatin for 6 treatments. I experienced the usual side affects; I got a prescription for a wig, that said “complete cranial alopecia.” I decided to proactively get my head shaved, as the nurse practitioner could tell me when my hair would begin to fall out. My friends came with me, we opened a bottle of wine, toasted my hair, and the razor was turned on. Very tough stuff. My course was uneventful; I had immense support spiritually, emotionally and physically from a tight network of friends and extended family. I returned to work six months later, full of strength and stamina.

Life happened after that… two years later, I got married to a marvelous man, we sold our homes and bought a new one, and I got a new job now working part time, back in the clinical realm as a hospice nurse. We traveled a fair amount, decorated our home, and had a fairy tale life!

But that is far from the end of the story. In January 2014 I got a new job at the University of Minnesota. Being a hospice nurse was wonderful, but I was ready for a change. I had a normal exam and CA 125 on Jan 3. Come mid-January, I was experiencing constipation. My new job was sedentary, and I had started taking a multivitamin with iron, so I told myself I had to walk more, and drink more fluids. The last Saturday in January I decided this was just not normal so I saw my Primary Care Provider. She thought maybe I had adhesions from surgery and remarked how healthy I looked. She suggested a high fiber diet, stool softeners, increase my water intake, to which I said, “We are way beyond that.”

I kind of wanted a CT scan, thinking I had some colon involvement, so she ordered a scan since it had been 5 years since my last one. I will never forget her words, “I don’t think you have anything to worry about.” I went to the grocery story only to pick up a message in the parking lot to call her ASAP. “I wish I had better news.”  Multiple lesions showed up in my pelvis. How could I possibly have a recurrence of stage 1 ovarian cancer almost 10 years later? It made no sense. In less than a week, I had a PET scan, saw the gynecological oncologist who could now palpate a sigmoid mass, and was scheduled for surgery. We were shocked and stunned and scared beyond words.

I signed a permit this time for a possible colostomy, and prayed fervently that would not be required. Thank fully it wasn’t. But I had metastatic disease in many locations. I had an end-to-end anastamosis of the small bowel, and extensive tumor debulking around the left obturator nerve. My husband was told I would most likely have a permanent limp due to the tugging and scrapping in this area. That first post-op night they had me marching in place multiple times, and my legs and feet worked fine. It was not until much later that I realized the significance of that simple movement.

Things were not straightforward this time around. Now there was something called dose density taxol, I could choose this or the regime I had previously, which was every three weeks – there was cold cap therapy, something only offered at one office, and not covered by insurance – I had to decide where to get the treatments – if it was closer to my home, it meant getting established with a different oncologist during the treatment phase. If I chose dose density taxol, I would need a port. And radiation was brought up – a conversation to be had when I completed chemotherapy.

I started treatment a month later. My bone marrow did not like getting assaulted with these drugs again. I frequently had low white counts, and the treatments were delayed numerous times. This was quite a blow – getting geared up for chemo, then being sent home due to white counts that were in the range of 1.5 – 2. It was gorgeous summer weather, and I was rather miserable – exhausted all the time – emotions out of control – appetite ravenous due to the decadron I was getting prior to a treatment. A big challenge for me during these months was the “head” piece.

Working in hospice, all I read were histories and physicals of people whose treatments had failed, people who thought they had beat cancer, only to have a recurrence, and now this was happening to me. An immense help during this time was a “healing coach.” Basically therapy – someone who works only with cancer patients and helps you develop coping skills, and takes the time to listen about how things are going in your marriage and family, your thought life, with a focus on things you can control. She reminded me my story is not the story of a patient I cared for. My story could be different. She reminded that some people are nourishing and some people are depleting. I could choose to only interact with the people that nourish me. Because for now – it is all about me. This member of my care team was invaluable.

During these months I was blessed beyond measure in so many ways. My husband was loving, caring and supportive and interjected humor whenever possible. Friends and family drove me to appointments – brought meals – sent flowers – I received 20 home cooked meals via FedEx from friends. My very understanding boss told me I would have a job when I was ready to return to work. This provided such comfort and reassurance. I went out in public when my white count was stable, but mostly I watched movies and slept and read. I was not the least bit bored.

At the conclusion of chemo, I had a follow-up CT scan and it was normal! I did bring up the radiation topic and was told, “There is nothing to radiate. The CT is clear.”

Conversation continued, and because I fell into a “gray” area – a recurrence of stage 1 disease ten years later, we consulted a radiation oncologist. After a day of thinking it over, we decided to proceed with radiation.

It was explained that of course there are no guarantees, and in my case there was no evidence based protocol to follow. But this recurrence was the result of metastasis via the lymph system, and theoretically radiation to the pelvis should provide added insurance and kill any stray cells that remained. I proceeded fully informed of the potential side effects of damaged lymph nodes and worsening lymph edema. The clincher for me was this – if I had another recurrence a year from now – and I chose not to get radiation – I would have a very difficult time living with myself. I needed to know I had done everything possible to beat this disease once again.

I returned to work a month after radiation was completed, that was January of 2015. My subsequent CT scans have all been clear!! We are over the top thankful and happy and I expect to live at least another thirty years!!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Lisa

Lisa

Age at diagnosis: Over 50
Stage at diagnosis: Stage II

This is how my survivor story begins.

At my annual physical exam in September 2009, my doctor informed me that he felt something different – but not to worry, as he thought it was simply fibroids. My doctor then scheduled an ultrasound to be done the next day.

The ultrasound showed an 8cm and a 12cm tumor. This was quickly followed by an MRI and finding a gynecologic-oncologist. My CA-125 at the time of the surgery was 38.5. While it can be a good marker for other women, clearly, it was not a good marker for me.

My surgery took place on September 28, 2009. My ovaries, fallopian tubes, lymph nodes, cervix, uterus and omentum were removed. After surgery I was informed that it was indeed ovarian cancer and I was staged at IIC.  After recovering from surgery, I started the standard chemo treatment of six rounds of Taxol and Carboplatin. I experienced severe bone pain and also had to receive Neulasta shots two or three times because of low white blood counts. I then went on Avastin, but stopped after 9 treatments because of the side effects I experienced.

Four and a half years later, my cancer had returned. In March 2014 I had more surgery followed by chemo. This time they started with Carbo/Taxol and later switched to Gemcitabine/Carboplatin with the hope of  tricking the cancer cells and getting rid of them permanently!

Following the chemo treatments I agreed to participate in a PARP inhibitor research study which I am still on. I am monitored weekly and my hopes are that if any little cancer cells want to revisit, my body will let them know they are not welcome and to GO AWAY!

Cancer has been a very humbling experience and I have to say that I am a far better person as a result of it all. Lessons and challenges I would not wish on anyone, yet it is what it is.

In July 2014, my husband and wonderful caregiver, Rocky, and I became first time grandparents.

I believe that family, friendship, laughter, healthy eating, along with exercise, are all that matters and it is always one day at a time.

MOCA is and always has been such a wonderful supportive organization that I am so happy being a part of.

Cancer can be so isolating and lonely, but  with the support, love and caring, when coming together with others traveling on the same journey, there is a new found beauty that emerges bringing forth joy never imagined.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Lynn

Lynn

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage I

My story has a somewhat convoluted beginning. I had always been a heavy person, and at age 43 I weighed almost 300 lbs. In December of 2006, my kids and I traveled to Phoenix to spend Christmas with my two brothers, their families and my mom. While we were there, we took many family pictures. After we returned home and I got a chance to look at the pictures, I finally made the decision to start the process for bariatric surgery.

Bariatric surgery is a long process with surgeon, nutritionist, and psychiatrist appointments. I finally got my last clearance at an appointment on the morning of June 1, 2007. I returned to work and got ready to schedule my surgery.

Shortly before lunch time one day I started having extremely sharp cramps. My cycle had been pretty irregular, but I had attributed this to fibroids, which I had been diagnosed with in 2000. I decided to go home and lay down with a heating pad and some ibuprofen. Somehow I thought that this might be something more and I called my clinic quickly to see if I could get in.

I was seen by a new doctor, and after a blood test I was told my white blood cell count was elevated. The doctor thought that maybe the pain and elevated count was due to diverticulitis and ordered a CT scan. By the time that this was decided, it was around 3:30 p.m. and I knew that my kids (daughter, 16 and son, 13) would be home. I didn’t want to leave them home alone, so I picked them up and took them with me to the radiologist.

At the radiologist I drank that icky white fluid that is supposed to taste like banana and then waited. I started to feel very uncomfortable and it was painful to sit back. I was called in for the scan and waited for the clinic to let my doctor know the results. Probably an hour later, I was told that the doctor wanted me to get an ultrasound and I did. After that, there was an internal ultrasound. My kids were still with me, so I called my dad to come and take them home. This was around 9 p.m. and I figured I would get sent home after the next ultrasound. I started feeling horrible: nauseated, pale and clammy. While I was waiting for results, my dad showed up to pick up the kids and took them home for me.

Finally they told me that my doctor was on the phone. She told me that they thought I had a twisted ovary and that the pain I was feeling was due to the ovary dying and that it needed to be removed. She told me that she would meet me at the hospital next door to do emergency laparoscopic surgery to remove it. By that time I was in so much pain that I just said ok, got in my car and drove the quarter mile to the hospital.

On the way I was so scared that I started calling people. I called my brother and sister-n-law – they weren’t home. I called my mom (who lived in Texas at the time) and she wasn’t home either. I called my dad to run back over to my apartment and get the kids because I was not coming home. Once I got inside the hospital, I couldn’t use my cellphone anymore. They got me a gown and all I could think of was how odd it was that no one knew I was there. They put me under and sent me into surgery for the procedure.

Once I was in the operating room and they were starting the procedure to remove what they thought was a dying ovary, they found my entire abdomen full of blood. I had had an ovarian cyst that ruptured and had been bleeding internally for around 10-11 hours by that time. They stopped the laparoscopic procedure and made a much larger incision to remove what was left of the ovary and the fallopian tube. I was hospitalized for five days.

A week later I went back to the surgeon’s office for follow-up after surgery. The surgeon came in and asked how I was doing. I said I was fine other than being sore, and then he dropped the big news. He told me that the pathologist had found something unusual. It was not officially ovarian cancer, but close enough that he wanted to act as if it was. I was immediately taken out of the exam room to get a CA-125 test and then taken down the long hall to wait to schedule more surgery. I was totally dumbfounded. I was called in to the surgery scheduler, who started talking about scheduling surgery in five weeks. I didn’t know what she was talking about: a salpingo what? Why an appendectomy? And a hysterectomy? I just sat there and made the comment that I had no cancer in my family history. Her response was: “Now you do.” I left that day with an incision check, a bunch of pamphlets and an appointment for more surgery.

Over the next few days and weeks, arrangements were made for my kids. My sister-in-law, who works for an OB/Gyn, had her boss look at my medical records from the first surgery and she recommended an excellent gynecologic oncologist (never heard of such a thing). I went in to meet the oncologist and decided to have her perform my second surgery. Between then and the date of the second surgery, my mom moved back to Minnesota from Texas. In the meantime, the oncologist had her own pathologist review the slides from my first surgery and changed the diagnosis. The day of the surgery, she told me that it was officially ovarian cancer, but that we were going to treat it the same way we had planned.

The next few days were a blur. I found out that everything that they removed came back with zero malignancies. Because there was a rupture of the ovary and my abdomen was so full of blood, they could not test for any loose cancer cells, even if they had had any suspicions then.

I was diagnosed as having stage 1C endometrioid carcinoma of the ovary. I was given the option of having six treatments of chemotherapy. Though I was not looking forward to whatever chemotherapy was going to be like, I still didn’t want to take the chance and opted for the six rounds.

September was a busy month. My short-term disability had run out, so I was back to work full-time, and I started chemo. The side effects were different with each treatment. I had awful bone pain after the first and my scalp broke out after the second. My last treatment was in January 2008. My kids and family were counting the days until I was done.

February brought some good news. I had my first PET/CT scan, and another CA-125. The results of the scan were negative and the CA-125 was low, at 6.9. Then it was back to being single mom of two teenagers, working full time, and anticipating the next test.

However, things are not the same. I find myself not worrying about irritating co-workers or crazy relatives that I really have no interest in being around. I want to fix the things that I just had not gotten around to. I want to change the way that my kids and I interact. I don’t want to waste me time with bickering, jealousies or attitudes. Life is too short!

MOCA is one of the bright spots that I gravitated to. I am really an extremely shy person; I cannot usually open my mouth in front of people I don’t know. I have felt welcome within this organization. I loved participating in the walk the first September after my surgery and have loved all seven after that. I have enjoyed myself at a couple of the health fairs and I had the chance to meet survivors and relatives of survivors. I find that I can talk to people more easily now. People want someone to listen. I can do that. They want answers to questions; I’m getting better at that.

Although every diagnosis is different, we have a common enemy. The statistics say that this disease is rare, but I have not gone anywhere lately where someone has not been touched in some way by this disease.

I try to keep going forward. I want to help find a test, to find a cure and to support others with this disease and then see what comes next.

I wrote my story back in 2008, so I wouldn’t forget the details (I didn’t want to forget it due to chemo brain). I wish I had done a few things differently, but it’s hard to see the big picture when you’re in the middle of it all.

I had my bariatric surgery four years later and lost 80 pounds. That was not as high as my ultimate goal, but it did get me off all my diabetic medication. I changed jobs and both of my kids graduated. I am still NED (no evidence of disease), and I am still involved with MOCA. Thank you to MOCA for all the support and new friends! I look forward to the future.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Marcia

Marcia

Age at diagnosis: Over 50
Stage at diagnosis: Stage II

In 2012 and 2013 I began to notice changes with my menstrual cycle, just like all women do as their body begins to prepare for menopause.  There was nothing unusual or alarming.  I suppose the only thing unusual was that I was almost 56 years old and still having monthly periods.  However in May 2013 after my period, I had what I thought was a common yeast infection that wouldn’t clear up.  Since it didn’t go away after using over-the-counter medication, it did cause me to finally call the nurse line a week later.

On Monday morning I called the nurse line to get advice and determine what I should do.  The nurse carefully listened and encouraged me several times to schedule an appointment to see my doctor.  I didn’t think that that was necessary; it was “just” a yeast infection or possibly perimenopause changes.  She checked the schedule and my doctor just happened to have several openings that same day.  I finally relented and took one of the appointments.

When I saw my doctor he also carefully listened to me.  He did an exam and realized something was going on and that I needed further evaluation.  So right then he conducted an ultrasound and discovered a cyst on each ovary.  I wasn’t too alarmed because I know that cysts are not unusual.  He also saw that my uterine lining was thickened, which I believed was causing my symptoms.  He then took some biopsies.

My doctor called on Friday morning.  The biopsy results from the uterine lining showed abnormal cells.  Due to the abnormal cells, the cysts on each ovary and my age, he highly recommended a hysterectomy!  It was a bit of a shock for me to hear the word hysterectomy since I thought I had “just a common yeast infection”.

Given the possibility of cancer due to the abnormal cells and the skill needed to perform laparoscopy surgery, which my regular gynecologist did not do, he referred me to a surgeon who was a gynecologic oncologist.  This was a very good thing for me and the right recommendation!  Their office called that same afternoon and I learned that there was an opening on Monday.  It was wonderful to have such a short time to have to wait for an appointment, although I did feel like that was one of the longest weekends in my life!

So within one week of calling the nurse line, seeing my doctor, and getting a referral, I was in another exam room talking to a surgeon about having a hysterectomy.  Of course she talked about the possibly of me having cancer due to the abnormal cells but I knew that wasn’t the case.  I was feeling great and had no pain or any other issues.  We scheduled the surgery to be conducted in 2-1/2 weeks.

On June 26, I went to the hospital to have what I thought would be a routine hysterectomy.  Once the hysterectomy, which included the removal of the uterus, cervix, both ovaries and both fallopian tubes, was completed, the surgery was put “on hold” while they conducted a quick pathology test.  The surgeon learned that I had 2 cancers, ovarian cancer and uterine cancer!  So she went back in and removed my omentum, 15 lymph nodes from the pelvis and abdomen and endometriosis as well as a conducting of a complete pelvic washing.  I was lucky that it hadn’t spread to any other organs and all the things she removed came back negative, cancer free!  Although my surgeon felt confident that she removed all the cancer, she recommended chemo as my insurance policy for any remaining cancer cells that may have been hidden.

After my surgery I stopped by my regular doctor’s office to thank the nurse on the nurse line for listening to me and encouraging me to schedule an appointment.  I also thanked my doctor for listening and not discounting my concerns and for being very thorough in his exam because ultimately, they both played a huge role in saving my life!

Before I started my first chemo, I discovered MOCA.  It was so wonderful to talk to a staff person who understood what I was going through.  I was even matched with a mentor to talk through my concerns and fears.  A few weeks later, I stopped by the office and immediately felt connected.  There were books and resources I could check out and I even signed up for the MOCA Gala, the night before my first chemo!  Weeks later, I attended support meetings and began to participate in all sorts of MOCA activities including creating a team for my first HOM Teal Strides walk/run that September.

3-1/2 weeks after my surgery I began my first of 6 rounds of chemo with the drugs Carboplatin and Taxol.  The first round of chemo was hard mainly due to my being scared and not knowing what to expect.  But the good news was I was able to tolerate the drugs okay especially since the oncologist offered a number of anti-nausea drugs to keep that in check.  Of course now in addition to recovering from surgery and dealing with chemo, I was going thru surgically induced menopause, so I had to deal with those symptoms too!

During each of my 6 rounds of chemo I had a chemo buddy, a family member or friend who would come with me during treatments to offer help, love and encouragement.  The 6 rounds seemed to be a long time when mapped out for months on the calendar, yet the every three week cycle and each time being able to cross off one more round of chemo helped to keep me going.  As I became more experienced with the chemo and learned what to expect, it became a little easier.  I began to gain my strength back from the surgery and was starting to feel better.  Chemo week was hard, but there was always week 2 and week 3 to look forward to when I would feel better!  I became stronger and more active during this time and began to do a lot of walking.  Once I was given the final okay from the surgeon to resume normal activities, I began to run again; however it was more like a really fast walk!  But during those hot days of August when I ran, I would imagine sweating out any remaining cancer cells and that kept me motivated.

I finished my last round of chemo on Veteran’s Day 2013.  It was a great day!  My daughter fixed a special dinner and my husband, daughter and her boyfriend all celebrated with me.  Now I celebrate anything and everything, big or small.  I continue with regular checkups and so far things are looking good for me which is very reassuring.

I have been on the MOCA Board of Directors since May 2014 and love volunteering and participating in all the MOCA activities and events.  Since then, I have become even more involved in the ovarian cancer community.  I joined the board of directors for the Ovarian Cancer Survivors Foundation which helps to fund the ovarian cancer retreats at Camp Mak-A-Dream in Montana.  I have attended the camp twice as a camper and will be going in August 2015 as a volunteer.  Lastly I am very active with my ovarian cancer friends in the Twin Cities, the Chemo Chicks.  We have fun together, laugh and provide support for each other thru the ups and downs of ovarian cancer.  Since my diagnosis, I am amazed and inspired by all the women I have met and now feel like I am part of a very, very special group of women.  Throughout all of this, I have learned that I am stronger than I realized and am capable of facing tough news head on.  Little things really don’t matter so much anymore.  I try hard every day to do what a special friend recently said to me, “Live with enthusiasm”!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Mary

Mary

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

In April of 2011, I was diagnosed with Stage IIIB ovarian (high grade serous) cancer at age 57.

I believe my symptoms started about 7 months earlier, in November of 2010…

– One day my 25 lb. dog stepped on my left lower abdomen and I felt a pressure;
– I was more tired, taking naps after work;
– I had gained 10 lbs. over the last year, had a small appetite and got full fast.

In January 2011, I saw my internist for my annual physical with a routine PAP test. I remember thinking later on, I wonder why my vaginal exam was so painful and I should call my doctor to discuss. Well, I never did, that is until April, when the pressure got worse and now I was having frequent urination during the night and pain with gas and bowel movements.

I made an appointment with my internist for lower abdominal pain. This time on exam, a mass was felt, it was painful and tender. An ultrasound was ordered which revealed a large lower left abdominal mass. I was referred to an OB/GYN for follow-up who ordered a transvaginal ultrasound, a CA125 “tumor marker” blood test and a pelvic CT scan, along with a referral to a gynecological oncologist surgeon.

I was scheduled for surgery on April 8, 2011, and awoke from surgery to discover I had ovarian cancer with metastasis to the omentum. 14 of 14 peri-abdominal lymph nodes removed and tested negative.

On May 18, 2011, I started on a chemotherapy regimen, which included intravenous and intraperitoneum, Cisplatinum, Taxol, and Avastin (a clinical trial drug study). My chemo ended on Sept 15; however the Avastin infusions lasted about another year, ending in August 2012.

The summer of 2011 was tough: I battled severe nausea and abdominal pain and weighed only 97 lbs. (a 23 lb. weight loss since surgery). On July 26, I was hospitalization for intractable abdominal pain, nausea, dehydration, hypokalemia, weakness, pancytopenia, anemia, neutropenia – I was a mess! I had a wonderful nurse admit me to the oncology unit and when she took my history she quickly realized I needed the “BAD” infusion – Benadryl, Ativan, Dexamethasone. Thank you, God! Relief was almost immediate.

In mid-September I suffered another setback of continued abdominal pain and nausea despite all of the oral medications I was taking. I went into my cancer clinic and the decision was made to send me home with an infusion of the BAD. I was able to manage this myself with the help of my husband and a home infusion company. I could also give myself IV fluids, which was a big advantage, as even water tasted like metal.

Fast forward to November 2013, I had my first reoccurrence; a 1.5 cm retroperitoneal lymph node was biopsied and positive for metastatic cancer.

I underwent 6 cycles of chemo – Carboplatinum and Taxol. That proved to be ineffective as a February 2014 CT scan showed continued growth of the lymph nodes, so chemo again… a clinical trial of Doxil was prescribed from Dec – Jan 8, 2014. This was stopped due to a severe body rash.

Then, a new chemo regimen was prescribed – Alimta, which I received until Oct 2014.

My known risk factors include: My age, never had children, hormone replacement therapy for 5 years, and a positive family history of breast cancer in 2 maternal aunts.

So today I am feeling great with plenty of energy. It will be 3 years this October (2017) since I’ve had chemo and last Spring I celebrated my 5-year mark!

I thank God every day for the gift of life and my awesome support systems including my family, friends and medical team who got me through this journey. I continue to see my oncologist every 4 months for labs and CT scans.

Thank you for reading my story and please spread the word about ovarian cancer signs, symptoms and HOPE!

Meghan

Meghan

Age at diagnosis: Under 30
Stage at diagnosis: Stage I

Few people at the age of 20 think about cancer, and far fewer ponder the possibility of it happening to them. It is an age at which the vast majority of us believe that we are invincible – an age at which, if we ever even consider it at all, we only contemplate the future in terms of the endless opportunities that lie ahead.

To say that I was shocked does not even begin to convey the wide array of emotions that came over me when I was diagnosed with stage I ovarian cancer several weeks before entering my junior year of college.

Looking back on it now, I’m not entirely certain if I experienced very many symptoms prior to being diagnosed; if I did, I undoubtedly disregarded them, as many of the ones that are typically cited tend to be those which most young women are not accustomed to viewing as indicative of anything more serious than stress or an upcoming period. As a result, it was not until after at least a month or so of having a slightly hardened and distended stomach that I made an appointment with a gynecologist.

The following week, an ultrasound revealed some sort of a cyst or tumor, which according to my physician would almost certainly be benign given my age. Nonetheless, he sent me to the hospital directly, and thus began what was unfortunately the first of many stays at a hospital. Following nearly two days of various tests and questions, my physician decided to proceed with surgery, which resulted in the removal of a large tumor on my right ovary, as well as a smaller one on my left.

As I was happily seeing my tumors off to the pathology lab, and throughout the remainder of my recovery at the hospital, the unlikelihood of any malignancy was continually emphasized by my physician. Aside from feeling utterly nauseated from the pain medication, I was overcome with an immeasurable sense of relief that everything was finally all “over.”

Two weeks later, when I confidently returned for a follow-up examination, I was told that everything was not, in fact, over. Quite the opposite, it was all just beginning. One of my tumors was indeed malignant; it was a grade 3 (a more aggressively developing) immature teratoma, an uncommon kind of ovarian germ cell tumor, which in truth my own physician could tell me very little about other than that it would require several months of chemotherapy.

Throughout the next two weeks, I was referred to an oncologist and an oncologic surgeon, underwent extensive testing, including AFP tumor marker tests as well as other blood work, X-rays, CT scans, and pulmonary function tests, had a second surgery involving the removal of my right ovary, fallopian tube, appendix, and pelvic lymph nodes, took the semester off from school, quit my part-time job, moved back into my parents’ house (a difficult thing for any young person reveling in the newfound independence that accompanies one’s early 20s) – and then began chemotherapy.

What followed in the next several months is often difficult for me to recount in great detail, partly because of my generally drugged and exhausted state at the time, but perhaps more so because of how incredibly overwhelming it all was, together with the often imperfect manner in which those emotions, even six years later, seem to translate into words. I remember being very sick. I remember being angry, frustrated, and resentful. And most of all, I remember being very, very tired of it all.

Though I would not trade my experience for any other, chemotherapy was quite possibly the hardest thing that I have ever and will ever have to go through. A woman with the same diagnosis whom I had met over the Internet once told me, while I was in the midst of treatment, that I would one day call chemo “my best friend,” and she could not have put it better, but I was very close to hating it then.

Initially I was most alarmed at the prospect of losing my hair; in hindsight, this became one of the easiest side-effects to deal with, albeit the one that remained the longest. The nausea, the exhaustion, the insomnia, and the flu-like aches and pains, to name a few, were, on the other hand, far more consuming. I am profoundly grateful for the love and support of my family and friends, for I cannot imagine how I could have endured it without them.

Though having cancer is never easy for anyone, for a young adult it comes with a markedly different set of challenges. As one young ovarian cancer survivor explained in describing how she felt out of place in a support group consisting primarily of older members, many of them had “lived out their dreams of marriage, children, and work aspirations.”

At 20, however, one’s life is still characterized considerably by various aspects of self-discovery, be it in the pursuit of career and educational goals, in the development of new relationships, and in so many other ways. To have to put everything on hold, or to possibly have it all end, was an emotional trial that I was, up until that point, entirely unprepared for.

Many of my friends, to whom I had once found it so easy to relate, could not even begin to comprehend the immense fear, loneliness, and sense of loss that accompanies cancer, the longevity and the enormity of it all. These were the sorts of deeply embedded mental struggles that were difficult to leave behind at the end of the day, even long after treatment was over.

Despite all of this, I was enormously fortunate in that I needed only three cycles of chemotherapy (five consecutive days of Etoposide and Cisplatin every 21 days, one day of Bleomycin each week).

My treatment ended on November 14 of 2000, and while cancer will always be a part of my life, with routine checkups, blood work, and physical complications, I have met so many courageous women who have faced far more and who continue to face it still. Hearing their stories helps me continue to live my own life with greater strength and humility, and I hope that in telling my story I can in some way inspire others to find that same strength and to let them know that they are not alone.

Though everyone’s experience with ovarian cancer is different, there remain so many common themes – feelings of sadness and hope, fear and courage – that resonate among all of us.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Peggy

Peggy

Age at diagnosis: 30 - 50
Stage at diagnosis: Primary Peritoneal

In 2003, when I was diagnosed with primary peritoneal cancer, I knew my life would never be the same, and I was afraid. Cancer is very scary. At a time when more than ever before you need to have your wits about you, the debilitating effects of surgery and chemotherapy drag you down.

Interaction with the medical community becomes the essential focus of your life, but you quickly learn that doctors communicate in a different language, and you have to learn it if you want to be an informed decision maker. And it all comes at you so fast.

One thing that I did not anticipate at all was the enormous support that people would provide me. Family, friends, and – out of the blue – women who had already walked this path reached out to me. Now, seven years later and a survivor of two bouts of cancer, I can see beyond the scary part and acknowledge that there have been many deeply enriching and rewarding experiences as part of this whole new phase of my life.

I choose not to be defined by cancer. There is so much more to me. I am a wife, mother and grandmother. I have a career in retail marketing. I have faith in my church. I have a network of many wonderful friends. I love the Guthrie, and the Art Institute, the St. Paul Chamber Orchestra, the Minnesota Opera, and going to estate sales. And now I also reach out – almost every month – to someone newly diagnosed with ovarian or primary peritoneal cancer, paying forward the wonderful support that other women have given to me.

Our family joke is that being a cancer survivor is an elite club, but the initiation rites are hell. Here’s my story.

My diagnosis came about in an unusual fashion. In March of 2003, I came down with pneumonia. I had been working very hard and was run down. I was also feeling fat and had changes in bathroom habits. When I started bleeding, I simply thought, “Great. I’m just falling apart. Middle age is pigeon poop.”

Fortunately, in my annual physical exam later that month, my nurse practitioner did a pap smear. She called me immediately when my results came back showing “AGCUS” (atypical glandular cells of undetermined significance). While a pap smear is not a diagnostic tool for ovarian cancer, this test ultimately revealed that something was wrong somewhere in my reproductive tract – not in my cervix, but elsewhere.

I immediately had a transvaginal ultrasound and then a uterine biopsy by a gynecologist. I then had a coloscopy, a D&C, a histoscopy, a LEEP procedure and a cone biopsy. Each showed abnormality but no clear diagnosis.

The gynecologic oncologist scheduled a hysterectomy. In early July, I had a cystoscopy, urodynamic bladder testing, a colonoscopy and then the hysterectomy. Like I said, it comes at you fast.

As part of my surgery, frozen sections were examined to determine malignancy. Incredibly, no cancer was found and the surgeon decided not to do staging – the removal of lymph nodes and other tissue to see how far the cancer had spread.

The next day, my medical record shows that the pathologist did find malignant cells. Five days later, the surgeon phoned to tell me that I did have cancer, primary peritoneal, and it would require chemotherapy. This was an absolutely surreal moment. My husband and I were stunned.

Primary peritoneal has only recently been recognized as a distinct cancer type. This used to be called “extraovarian” cancer or ovarian cancer that had started outside the ovaries. It develops in cells from the peritoneum, which are very similar to the epithelial cells on the ovary surface.

I began chemo and returned to work full time the following week. I finished six cycles of taxol and carboplatin in December 2003. Because of the poor communication with the surgeon, I also changed to a different gynecologic oncologist.

Fast forward two years: In June of 2005, I found out that despite regular checkups and CT scans, I had developed a 7-centimeter tumor that my new doctor said was 90 percent likely to be malignant.

Actually, the tumor had shown up in the 2-centimeter size on my December CT scan, but the radiologist failed to mention that in his report. I had found out two years earlier how doctors can fail in their communication to patients. Now I learned that doctors don’t always communicate with each other.

In desperation, I decided to email a highly respected physician at yet another hospital. I had met her when doing volunteer speaking on ovarian cancer the previous year. She called me back and within two days I met with her for an examination. She had extensive testing done and selected a surgeon whom I met four days later.

I had an aggressive secondary cytoreductive surgery in June 2005. The tumor was removed, all upper and lower abdominal organs checked and 60 lymph nodes removed. The tumor was malignant, and because there were free-floating malignant cells, chemotherapy was advised. After dealing with some post-surgical complications, I began four more rounds of taxol and carboplatin followed by four cycles of Topotecan.

The two best tools for diagnosing this type of cancer, CA-125 and CT scans, are not that helpful for me. I’m a false negative as my readings stayed within the normal range, even when malignancy was present. I worry about the small fluctuations because my metabolism doesn’t seem to produce the dramatic swings that are a reliable indicator for some people. More accurate markers are needed. Because I have developed an allergy to the IV contrast used in CT scans, I have the scans without the dye which highlights everything so clearly.

Now in 2010, I have checkups with my oncologist regularly, alternating between CT and transvaginal ultrasounds. My stomach is in knots from anxiety every time, but so far so good.

So among the things I’ve learned on this cancer journey, I know that fear and uncertainty are not going away. I will never rest easy.

At first, a cancer diagnosis produces shock and denial. All the fears of a lifetime come to rest. It seems impossible that this has happened. Then comes the realization that one’s reality has changed. It is not as expected, but it is manageable.

Normalcy matters. My life is many faceted, and this is important to me. I need to keep things normal. I control my decision to love life, to be involved with my family, to relish every day, to savor friendships, to work at a job I enjoy, to volunteer in areas important to me. I bask in the sunshine – but if it’s a cloudy day, I enjoy the cloud shapes.

Trust matters. I trust my current physician to give me the best treatment available and to level with me always. I trust my religious advisor. My husband and I hope and trust in our ability to manage whatever comes our way.

Communication matters. When my father was diagnosed with advanced prostate cancer in the 1960s, the specialist told him he was fine and left the hard communication to our family doctor. I thought that approach was a thing of the past, only to have been on the receiving end of communication lapses in the first two years of my treatment.

Communication is not the cure for cancer, but lack of communication can and does do damage. Proactive communication is one important way a patient can have a role in fighting this challenging disease.

I encourage other women with cancer to ask questions, to take notes or have someone take them for you, to seek second opinions, to ask about the pros and cons of different medical and surgical procedures, and to ask about probabilities. Tell your physicians to communicate with you as they would have their doctors communicate with them—and in language you can understand.

Most importantly, seek out other women with cancer and share your experiences. Helping each other is another important way we can make a difference.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Ruth

Ruth

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

My Story

It is amazing to me that I have survived (and am thriving) for almost 12 years since my first diagnosis. I am just about to celebrate my 70th birthday. I have had two recurrences and was ready to go on chemo once again this summer after a steadily rising CA125, but then my PET showed that my tumors are shrinking and my CA125 took a downward turn so I’m ready to live each day of a long life!!

I was a high school choral director beginning a new and exciting year in September of 2000. I had scheduled a trip to Italy with my Chamber Singers for the spring of that year. It was my first such venture and a first for the school also. Around the first of October I noticed a considerable weight gain. I was constipated and felt very bloated. I thought it must be “middle age spread.” When I couldn’t reach down to tie my shoe, could only fit into a very loose-fitting dress, and looked about 5 month’s pregnant, I decided I better see my doctor.

She confirmed that I was constipated and bloated and put me on a regimen of Metamucil and mineral oil twice a day. After a week with no success and feeling miserable, the triage nurse made an appointment for me to see another doctor in the practice. By this time, I was also feeling a mass in my left groin, along with the extreme bloating. The new doctor did a rectal/pelvic exam, confirmed all my findings and ordered a CT scan. In addition, he made an appointment for me to see a Gynecologic Oncologist.

Next Steps

After the CT scan the following Monday, I received a call from my doctor who said that he was highly suspicious of ovarian cancer. I visited the Gynecologic Oncologist, who confirmed the suspicion and suggested surgery at the earliest date, which was November 1, 2000.

In those 3 weeks we had the wedding of my niece on October 21 and our children were all out-of-state in college but would be coming home for the wedding. We decided to wait until after the wedding to tell anyone. So, for an extremely difficult 2 weeks, I waited. On November 1, I was surrounded by the most amazing circle of love as I went into surgery. I knew that my life was not in my hands alone.

The Surgery

The surgery included removal of my uterus, ovaries, the omentum and my appendix, as well as optimal tumor debulking. I was found to have 800 cc. of ascites (fluid) and spread of the cancer which adhered to my stomach and colon. The pelvis and the fallopian tubes were filled with disease, as was the right diaphragm. My CA125 was 2055 and I was staged at 3C.

The doctor told my family that I had a fifteen percent chance of living for five years. (These were the statistics available in 2000.) They didn’t tell me this news until sometime later.

I began six rounds of chemo (Taxol and Carboplatin). After the first round, the CA125 dropped to 702. After all six rounds it dropped to 5!! Because of the great response to the chemo, my doctor told me that I would qualify for a national study and encouraged me to participate. It was a trial for the drug Ovarex. I would receive it by IV every three months for two years.

Ovarex is a monoclonal antibody made by special cells obtained from mice. It was to react with the CA125 to cause the body to produce an immune response to the CA125, thereby giving the recipient a longer life. I completed the study but, unfortunately, Ovarex has never been FDA-approved. I did, however, get seven years of being cancer-free. There’s no way to know how and whether the Ovarex contributed to that.

I continued on the lowest level of a Vivelle (estrogen replacement) patch because it seemed to decrease the intensity of migraines and it also eliminated hot flashes. With all those good things in place, I returned to full-time teaching.

A Long Road Ahead

In December of 2006, my CA 125 was creeping up. I got a CT scan which showed nothing definitive. By July of 2007, my CA125 was up to 88. The doctor ordered a PET scan which revealed three spots in the peritoneal area. I had no symptoms. By August, she suggested surgery, at which time three small masses were removed. One was on the aorta and one was embedded in the colon, and so four inches of colon were removed. Because I responded so well to Taxol and Carboplatin seven years previous, I went on six rounds of those drugs again.

As I finished my last day of treatment on January 17, 2008, my second granddaughter, Sophia, was born at the other end of the hospital!!

I retired from teaching at the end of that school year. I eliminated all Hormone Replacement Therapy, and the migraines never returned.

Two years later (December 2009), my CA125 was creeping up and an ultrasound revealed that again I had three new tumors. Rather than return to my original chemo drugs, I searched for a clinical trial and found one for which I qualified. It was a combination of Avastin and Temsirolimus. I was to receive a combination of the two drugs every week and could stay on the trial for as long as the tumors weren’t growing and/or I had no-to-minimal side effects. I was on the trial for six months and then was taken off because of mouth sores. They also said that the tumors hadn’t grown.

My Oncologist next suggested that I receive thirty-one days of radiation. I responded very well to that, and the tumors showed significant shrinkage.

The CA125 (every three months) gradually started increasing again and there were tumors showing up as I had PET scans every six months. The question was whether or not to treat when there were no symptoms. Then in June, 2012, just as I was to leave for Europe as a singer with the Basilica Choir, the CA125 dropped and the tumors showed shrinkage.

I am grateful for each stage along this transformative period of my journey. My doctor’s message to “get my life in order” was a good one for me to hear, and helped me to pay more attention to the eternal present.  My desire is to grow in the great compassion which is God.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Sarah

Sarah

Age at diagnosis: 30 - 50
Stage at diagnosis: Stage I

On June 3rd, 2003, I was diagnosed with Stage 1c ovarian cancer at the age of 31. Prior to being diagnosed, my husband and I had decided that we were ready to start a family, and after about nine months of trying to conceive without success, I decided to contact my family physician. She was not concerned, but because I was trying to get pregnant, she decided to schedule me for an exam to ensure there was nothing wrong.

While she was examining me, she detected an enlargement in the area of my right ovary. She was still not too concerned; however she decided to order a trans-vaginal ultrasound to get a closer look. At this point, I really had no other symptoms to speak of other than having difficulty becoming pregnant.

The ultrasound was completed approximately two weeks following my initial visit with the doctor. After a few days of waiting, I finally decided to call my doctor to find out the results. Unfortunately, she was not in the office and wouldn’t be until the following Monday. I asked the nurse to read me the results, which stated that I had three large cysts (each approximately the size of an orange), and one had “complex hemorrhagic properties.” I had no idea what that meant, and neither did the nurse. She tried to comfort me and told me not to worry, but I assumed the worst until I finally heard from my doctor the next week. Thankfully, she, too, felt that the cysts were benign.

In order to address the fertility issues, I was referred to see an OB/GYN. My doctor warned me that laparoscopic surgery may be recommended to remove the cysts, so I was prepared for that. After visiting with the OB/GYN, he decided to take the conservative approach by having me track my temperatures in order to ensure that we were timing things right while in the process of trying to conceive. After two months, I had a repeat ultrasound in May which showed no change, and I still wasn’t pregnant. We decided to go ahead with laparoscopic surgery to remove the cysts.

It was Tuesday morning when I went into the hospital, with my husband and mom at my side. We were all anxious to get the surgery over with and I had planned to recover in my own bed that very evening.

About 30 minutes into the surgery, the doctor came into the waiting room and gave my mom and husband the most shocking and devastating news…I had ovarian cancer and I would need a hysterectomy.

And instead of trying to remove the tumors himself, the surgeon immediately closed me up and contacted a gynecologic oncologist to consult on my case. My family and I met with him the next day. Based on the initial pathology reports, it was still unclear as to how aggressive the cancer was, and how far it may have spread. So instead of having a second surgery right away, the gyn-oncologist decided to allow me to recover, get additional testing, and have surgery the following Friday.

Over the next week and a half, I was very focused on recovering and preparing for my second surgery. I underwent blood tests and CT scans to determine whether or not the cancer had spread to any other organs. At that time, my CA-125 was only 23. Thankfully, the tests showed no obvious metastases, and the abnormalities appeared to be localized to my right ovary. With this information, we were all optimistic that the cancer was caught early, and I would only have to have my right ovary removed, which would mean that my fertility would be preserved.

My second surgery was scheduled for Friday, June 13th.Historically, this has always been a good day for me…I am not one to be that superstitious! And although it may not appear so on the surface, it was actually the day that changed my life for the better!

As I prepared to go into surgery, I was so grateful that I had my entire family, including my husband, parents, and in-laws, there to support me.

About half-way through the surgery, the GYN/ONC exited the operating room to update my family on the progress, and gave them more bad news. The cancer in my right ovary had actually spread to the left, and he also discovered that I had endometrial cancer in my uterus. Unless I was willing to go through extensive chemotherapy and risk the potential of recurring and possibly dying from the disease, the doctor explained that the only way to save my life and ensure the best possible outcome was to remove both my ovaries, fallopian tubes, and my uterus.

Upon learning this, my husband told the doctor: “Cut it out.” Although this was a very difficult decision for my husband to make, we had discussed this possibility prior to surgery, so he knew it was the right one.

The surgery lasted about five-and-a-half hours and consisted of debulking (removing) all visible tumor tissue, taking 26 biopsies from my diaphragm to my pelvis, and removing my entire reproductive system. I was now a cancer survivor and had a greater than 95 percent chance of beating this disease!

After about two months of significant post-operative complications and re-hospitalizations, I was finally able to begin chemotherapy on August 28, 2003. It was a scary time for me, but I was grateful that there were medications available to help kill every cancer cell that may be lingering in my body.

Exactly 13 days after my first chemotherapy session, I began to lose my hair. This was probably the worst side-effect from chemo – but once my husband helped me shave my hair off, it was actually a relief. And he decided to shave his head too so that we could be “bald beauties” together! In addition to hair loss, I experienced loss of appetite and mild nausea which was only temporary after each chemo treatment.

Towards the end, I was very fatigued for a few days after each session. However, I continued to work full time and felt relatively well, thanks to a number of medications now available which help minimize the side effects.

After six rounds of chemotherapy which I completed on December 4, 2003, I am grateful to say that I have been cancer-free ever since. The checkups every three months are still nerve-wracking, but I am always comforted to know that I am being followed very closely, and my risk of recurrence is minimal.

Throughout this experience, there were so many things in my life that helped me to remain strong and positive. Support from friends, family, and co-workers, and a husband who never left my side were the most significant.

Now that I am “out of the woods” (as my Dad would say), I am honored and grateful to be very actively involved with MOCA as a member of both the Young Survivor Network and the board of directors. The connections I have made through this group have helped me so much to deal with the losses we have experienced and continue on the path of healing.

Through my involvement with MOCA, I have gained so much: I have experienced excitement and hope as I hear about new research in ovarian cancer which is leading us towards more effective screening tools and better treatment; I have felt pain and sadness when I hear about “MOCA Sisters” who have lost their battle against this disease; I have been overcome by fear and anxiety as I await results of blood work every 3 months, wondering if my cancer has come back; I experience worry because one of my very best friends continues to fight this disease, but this worry is quickly replaced by admiration as she fights the battle with tremendous bravery, courage, and hope. So even though I truly believe that I am cured, I have so many reasons to keep fighting!

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Stephanie

Stephanie

Age at diagnosis: Under 30
Stage at diagnosis: Stage I

Beginnings

In the summer of 2004, when I was living in Colorado, I rolled over on my stomach on my couch and felt something like a lump. A little voice in my head told me I had a tumor. Naturally I ignored that little voice, thinking I was being pessimistic.

In August of that year, I had a major knee surgery, which put me on crutches until October. During this time I was extremely exhausted. I lost my appetite, I felt nauseous, and my periods where barely there.

In December, I went in for my yearly checkup. I told my gynecologist that I felt this lump, and that I was losing weight and just didn’t feel well. She gently smiled and told me I was too young to have anything wrong with me — I probably just had a small hernia from being on crutches for so long. I didn’t question her.

Time went on, and I kept feeling sicker and sicker. I actually thought I was pregnant and subsequently took at least 10 pregnancy tests between January and April.

Finally, on April 11th, my boyfriend and I were outside shoveling off my car from a 15-inch snowstorm. It was about 35 degrees, and all I had on were jeans and a sweater. Even so, I was dripping with sweat, and I started to see black spots in front of my eyes. I went into the house and basically stripped down — but I couldn’t cool down. I decided I had to go in to the doctor, because something was really wrong.

I went in to see my primary care doctor. She, too, thought I was pregnant, and ran more tests; of course they were negative. She then gave me a CA-125 and sent me on to radiology at another location, where I had a CT and transvaginal ultrasound.

The Road Ahead

At this point, I was starting to get scared. What I thought was going to be a quick in-and-out at the doctor’s office was turning out to be an all-day event.

I no sooner drove out of the parking lot when my phone rang. It was my doctor, who told me to come straight to her office. She told me I had a large tumor. They could see suspicious spots within, and my CA-125 was off the charts.

I had cancer — and I was only 27 years old. I was referred to a gynecologic oncologist and had surgery on April 18, 2005. A 10-pound mass was removed, and thankfully it was only stage Ia.

About six weeks later, though, I started having severe abdominal pain again. After an ultrasound showed a small mass in my remaining ovary, my doctor wanted to see if it was a cyst before removing it and prescribed Vicodan for the pain.

Three weeks passed; another ultrasound. The mass had tripled in size. Again, my CA-125 was off the charts. I was having a recurrence. I couldn’t believe it.

I went into surgery on August 3, 2005. This time it had spread to my appendix. The second ovary was removed, along with lymph nodes in my abdomen. I went through two rounds of chemotherapy.

Honestly, I have struggled with the fallout emotionally and physically. The surgeries kicked me into early menopause, and I gained 65 pounds within a few months. I also experienced hot flashes and mood swings. My cholesterol went through the roof. I also developed atrial fibrillation, which is genetic, and something I would have developed eventually anyway.

At the age of 27, I was told I would never have children — causing my boyfriend at the time to “reevaluate” our relationship and leave me. All I could think was, “Who would want me now? I’m damaged.” I also struggled to find adequate post-treatment care.

Today

Four years after my first diagnosis, I have an amazing boyfriend of two years. I moved back home to the Twin Cities three years ago and have a wonderful team of doctors. I am currently finishing my bachelor’s degree in physiology and biochemistry and plan to go on to medical school for pathology. My main goal is to do cancer research and find a way to diagnose ovarian cancer early and to hopefully find a cure.

My anger is gone, and I have realized that God has a reason for everything, though we may not see it at the time. The support I have found with MOCA has been an inspiration and a wonderful source of love and friendship.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions. 

Susan

Susan

Age at diagnosis: Over 50
Stage at diagnosis: Stage III

A Different Kind of Story

My story is a lot different than most ovarian cancer stories. I was 59 years old in March of 1997 and had never felt better in my life. We had just returned from a week’s vacation in Cancun, and I went to see my OB/GYN for my yearly checkup. At the time of the visit, my doctor said everything looked good and he would be in touch with the results of my pap smear.

Six days later, he called me and said there are cancer cells present on my pap smear but they are not typical uterine or cervical cancer cells. He said we should schedule an exploratory surgery as soon as we could. This was a Wednesday and the following Monday I had the surgery.

Good News and Bad News

My doctor came to see me after the surgery and said he had good news and bad news. The good news was that I did not have either uterine or cervical cancer. The bad news was that I had ovarian cancer but that it was probably an early stage. I was devastated, as not a year earlier I had lost a friend of 40 years to ovarian cancer.

We then scheduled the hysterectomy for that Friday. After the surgery and getting the histology report, I was diagnosed with a stage IIIc, grade 3. This diagnosis, of course, came as a complete surprise.

Right to Surgery 

My surgery was done by an OB/GYN, and I should have had the choice of going to a gynecological oncologist. However, this doctor never mentioned sending me to a specialist and the diagnosis came out of nowhere and took us so completely by surprise we didn’t know what to do. I was so mortified and had no one to talk to about all of this, so we just let him do the surgery. Fortunately for me, he appeared to have done a good job.

Within a week or so after my surgery, I did learn of the specialists who handle these kinds of female cancers. I confronted the doctor with this and he said he felt confident he could do my surgery and he did. He also started preaching to me about life and death and started spouting off survival statistics and I said to my husband, “We are out of here.”

Also, in this process, when I did ask him to recommend me to a gynecological oncologist, he didn’t do so. I went and found an oncologist on my own. I see a medical oncologist and also see a gynecological oncologist now.

A Long Journey 

I have had a long journey with this disease. My first chemo treatments started three weeks after my surgery. I was admitted to the hospital for two days for my treatments. I had taxol/cisplatin over a 27-28 hour period. The anti-nausea drugs were not as good as they are now, and I was very ill for days after the treatment.

After six of these treatments, my numbers were down to 7 and I was in a remission for two years. Then my numbers started rising. This time around I was given taxol/carboplatin and got a six-month remission after I finished that treatment. This started in January of 2000, and I have been in almost constant treatment since that time.

After my short remission I had Doxil, Gemzar, and then weekly taxol. When the weekly taxol stopped working, we tried oral vp-16 and hexalen. Next we tried carboplatin as a single agent every month and were in that protocol for three years with a short break somewhere in the middle. Then low-dose taxol weekly for a year. I have had close to 150 treatments and, due to that fact, most of my treatments were at a lower dosage. I am presently on a chemo break.

Keep Going and Going and Going

A friend of mine recently said that I am just like the Energizer bunny. I just keep going and going and going, and I hope to keep on going for a long time.

One message I would like to pass on is this journey has been made easier with wonderful doctors, family, and friends. I’ve gotten to know women I never would have met otherwise, and I’ve made some wonderful friendships. Another message is to make sure you are seen by a gynecological oncologist for surgery and treatments.

In September of 1999, I received a phone call from a woman named Molly Cade, who got my phone number from the list at Conversations and also from the ACOR computer list. She said she was interested in starting a group of ovarian cancer survivors to spread the word about ovca.

I was going to a dinner the following evening with some ovca survivors that I had met, and Molly and Kris Warn came along. She told her story, and we got a few other gals, and before we knew it, MOCA was formed. By January of 2000, we were incorporated, and the rest is history.

I am so proud to be a founding board member and still an active member of MOCA. It is a wonderful organization and we are definitely educating women and others about this disease.

The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.