In 2003, I was diagnosed with Stage III ovarian cancer at the age of 60. I am very grateful to still be alive and enjoying each day in spite of the discomforts and inconveniences of on-going chemotherapy. At the time of my diagnosis, I was not quite so optimistic about my future.

I am not sure how long I experienced the symptoms of ovarian cancer. It just seemed that once I turned 60 years old in 1999 I had all kinds of complaints, none of which seemed serious enough to see a doctor immediately. I imagined that my discomfort was due to my age, so initially I was just accepting of the physical problems. I experienced frequent urination and stress incontinence, digestive problems, abdominal pressure and bloating, indigestion, gas, acid reflux, low back ache, lack of energy, and often fatigue which I attributed to my high stress job as a school principal. I did see my gynecologist for my annual pelvic exam and Pap smear every year. Also my annual visits to my family physician who kept me up-to-date on screening tests, e.g. sigmoidoscopy were faithful. At one point I did mention that acid reflux had shown up and was keeping me awake at night, so he prescribed Aciphex, which controlled that symptom. In the fall of 2002 he also referred me to a gastroenterologist for further examination, but I wasn’t able to keep that appointment until January 2003.

In October of 2002 I saw the gynecologist for my annual pelvic exam. I didn’t happen to mention all the other problems I was experiencing since I didn’t think they were related in any way. He did the exam, said everything looked ok. As he was leaving the room I asked what I could do about the stress incontinence. His response was “nothing” and “try Kegel exercises”.

In November I began feeling really ill to the point of missing work. I visited the family physician again who ordered chest x-rays and told me I had pneumonia; there was fluid in my lungs. I also began to describe my other symptoms; he offered to do a pelvic exam and I explained that I had just had one a couple of weeks prior and that doctor had not mentioned any abnormal findings. He prescribed an antibiotic, which really did not clear up the pneumonia, so I went back and he prescribed yet another antibiotic. I could tell he was really concerned about me. In retrospect, I should have told him all the symptoms I was experiencing.

Meanwhile the other symptoms intensified and I was having abdominal cramping, constipation, and often diarrhea. One morning I went to the clinic without an appointment and simply declared I was really sick and needed to see a doctor. My doctor was out that day and the nurse sent me to a resident for examination. After a brief conversation and pressing on my abdomen, she declared I had irritable bowel syndrome, gave me some printed information and sent me home.

I finally had the appointment with the gastroenterologist in January 2003. She asked me if I was in pain at that particular moment. I said “no”, but described digestive problems I was having and that I had seen another doctor who said I had irritable bowel syndrome. This doctor’s response was “If you are not in pain today, I do not need to examine you”. That was it.

In February 2003 I started having vaginal bleeding which I knew was not normal for my age. I called the gynecologist’s office to make an appointment. The nurse told me not to worry, it was probably hemorrhoids. I insisted on an appointment even though my regular gynecologist was on vacation. The new gynecologist examined me and during the examination I just happened to ask: “What happens to your ovaries as you age?” He responded that it was interesting I should ask that question because he was feeling something on the ovaries and was going to order a vaginal ultrasound and subsequent CT scan if needed. I had both procedures. The gynecologist’s office called me and made an appointment for me to see my regular gynecologist who would be back from vacation on the following Monday.

While I was preparing for bed that evening, my husband came in with a printed email from my brother-in-law in California. It was a letter from a woman who was describing all the symptoms she had experienced and then had been diagnosed with ovarian cancer. I read it through several times, looked at my husband, and said, “I’m pretty sure I have ovarian cancer.” This was the first time ovarian cancer had been even mentioned in all of the months I had been seeing doctors. So, I was not surprised to hear that diagnosis from my gynecologist the following Monday. He referred me immediately to a gynecological oncologist. I asked for an immediate appointment the next day and they honored that.

When I met with the surgeon, I felt comfortable with and trusting of her. She was frank and upfront about what to expect. Debulking would take place, but the cancer would eventually come back. Chemotherapy would be necessary following surgery. When did I want to do the surgery? “Tomorrow”, I said, and she cleared her morning calendar for my surgery. I was very grateful; I just wanted to get this over with. My husband and I were still numb with the news, and we still had to tell our children and our families.

The surgery went well. Recovery was long, and I wanted all my energy back right now. The surgeon encouraged me to fight the disease, because I still had a lot of living to do. I agreed to a clinical trial involving taxol and carboplatin. I would be able to get the chemotherapy at one of our local clinics. I believe I started the chemo at the end of April 2003. Unfortunately, I had an allergic reaction to the taxol and could not continue in the study, but I did continue with the carboplatin outside of the study for the next 6 months. At the end of the 6 months I was finished with that chemo and asked the supervising oncologist what the next step was to be. He said to come back when I had symptoms; otherwise he would see me in 6 months. He did not do a scan, so I do not know if that chemo had any effect on the cancer.

Five months later I began experiencing vaginal bleeding again. This time, I did not return to my original gynecologist. I still felt that there must have been some clue as to tumors on my ovaries when I was examined in the fall of 2002. I felt he had been evasive for some reason and I no longer trusted him. This time I called my daughter-in-law who is a gynecologist and asked her to examine me. She did. Although she was not able to ascertain where the bleeding was coming from, she insisted I have a CT scan and subsequent biopsy if necessary, given my recent past history. The scan picked up spots on my liver and a biopsy confirmed ovarian cancer had spread there. We notified the gynecologic surgeon and she arranged for a liver specialist to do surgery with her. This was done in May 2004. After surgery she referred me to a medical oncologist with whom I have worked ever since and to whom I credit my still being alive and enjoying a good quality of life.

The medical oncologist has been very creative with the chemotherapy so that the cancer has been managed. If the tumors grow or the CA 125 starts to rise, he moves on to yet another combination of drugs. I appreciate the fact that he orders CT scans at least every 8 weeks and sometimes more often as needed. I always know exactly what is happening in my abdomen and the reasons for switching drugs. All my chemotherapy has been tolerable and manageable. Drugs have been available for any unpleasant side effects, so I have felt well most of the time. As I await test results to determine if this chemo is having any effect, I continue to look for clinical trials for which I might be eligible.

This has been a long story, but I find that it is fairly typical of what other ovarian cancer survivors have been through. I do try to educate women I know about the symptoms and the need to be assertive when asking for tests or assistance. My one mistake, in retrospect, was not explaining all the symptoms to both my family physician and to my gynecologist. I really did not know anything about ovarian cancer and it is not in my family history. I would hope, however, that when presented with the symptoms, that doctors would begin to ask their patients more probing questions or even suggest additional symptoms that the patient has not mentioned. I hope, too, that there will be a reliable screening test for ovarian cancer in the near future.

I credit MOCA with bringing the message out to all women and I will continue to support that organization not only with donations to research projects but also help in educating medical people in recognizing the symptoms so that women get help before the cancer gets to an advanced stage. Using a symptom survey to detect the early stages of ovarian cancer is being developed and I hope that it will be adopted by all clinics and doctors.

I am very grateful to my gynecologic oncologist surgeon and to my medical oncologist for their expertise, their creativity, and their compassion. I feel secure in their care. I am grateful to my husband who has been beside me throughout this experience and to my family and friends for their love and support. My religious faith has sustained me throughout this experience. I find myself thanking God each day for a wonderful day. During this period of time four grandchildren have been born and I feel so fortunate to still be here to enjoy them. Having a serious disease certainly changes one’s outlook on life and realigns the priorities. I hope that women pay attention to their bodies and any changes that would signal a need for medical attention. The need to be assertive is paramount.

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