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.
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.
