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 afterward 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 a 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 storyline. 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.
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