I was diagnosed with stage IIC ovarian cancer in June of 2004. I was 44 years old. Like many women with ovarian cancer, I had only vague symptoms. I had a low back-ache for a few months that I attributed to a bad mattress. I had gained a few pounds and was fatigued, but attributed that to stress. And I often felt bloated and full after eating even small meals. Really, these were all minor discomforts. I only noticed them over a few months’ time, and even in retrospect, none of them would have prompted me to see a doctor. Due to the vagueness of the symptoms, I made two common mistakes: 1) I never linked my symptoms together, and 2) I never associated them, individually or combined, with ovarian cancer. I knew nothing about the disease.

What did prompt me to see my gynecologist was that my routine annual exam was due, and I had been feeling some mild ovarian pain for a couple weeks. But since I frequently experienced pain during ovulation and had ovarian cysts on and off over the years (which disappeared on their own), even the pain didn’t concern me too much.

When I saw my gynecologist in April of 2004, I was diagnosed with a large fibroid on my uterus. After an internal ultrasound two weeks later, my diagnosis changed. I had three cysts totaling 12 cm. on my right ovary and was told that they would have to be surgically removed. I asked what the chances were that the cysts were cancerous and was told “less that 1 percent”. I was given a CA-125 blood test to provide more reassurance and the test results were 12.5, well within the “normal” range of 0-35. This implied that chances of cancer were slim to none according to my doctor. There was no rush, so my surgery was scheduled for two weeks later.

At my pre-op appointment I was told that the cysts would be removed through a laparoscopy procedure involving three hairline incisions. In the unlikely case that the cysts were cancerous, I would need a total hysterectomy. This would require a more invasive surgery and much longer recovery period. I was given a pamphlet about hysterectomies and told not to worry.

On May 21, one month from my first doctor appointment, I had surgery done by my gynecologist. The cysts were removed in a laparoscopy and sent to pathology, with my doctor waiting for results and me on the operating table. From what I was told, a consensus on the diagnosis could not be reached and involved at least six doctor’s opinions - so the cyst/tumor on my ovary was described as “at least borderline”. Based on these preliminary findings and a conversation with my husband, my doctor performed a laporatomy to remove my uterus, both fallopian tubes and both ovaries. I recovered in the hospital for a few days and was sent home not knowing my prognosis.

Six days after the surgery, my doctor called me at home and told me that “the experts” had diagnosed my tumor as cancerous – stage 1C – mucinous cystadenocarcinoma. I was also informed that the experts recommended I have my appendix removed to insure that the cancer had not originated there and spread to my ovary. This would mean advanced disease, and I was devastated - not only because I had cancer, but also because I had to endure another abdominal surgery for something that clearly could have been done in my first surgery. To reassure me, my gynecologist told me that he had held my appendix in his hand, and that it looked perfectly healthy. He said it was my choice to have a second surgery, but basically follow-up treatment would be the same regardless. He told me that “these borderline things are highly treatable” and not to worry. But, I was worried. At this point, my husband and I requested copies of our medical records and started doing our own research. Through a personal medical connection we were told that it was imperative to see a gynecologic oncologist.

At our first gyn-onc appointment we were told the following: 1) my cancer had been staged incorrectly. It was at least stage IIC due to fallopian tube involvement (This had been clearly documented on the original pathology report, but was simply staged wrong by my doctor and the pathologists). 2) The second surgery was considered a debulking surgery, not an ‘appendectomy’. Although the surgery did include removal of the appendix, it would also involve several biopsies, removal of lymph nodes and other tissue, and an expert visual inspection for evidence of advanced disease - This surgery is the only way ovarian cancer can be accurately staged. 3) After surgery I would require the standard six rounds of carboplatin and paxitaxol chemotherapy.

So, four weeks after my fist surgery, I had the second surgery performed by my gynecologic oncologist. Gratefully, there was no evidence of advanced ovarian cancer, and the extent of my disease was defined as FICO grade II, stage IIC. I did, however, experience some surgical complications which I believe compromised my ability to tolerate the chemotherapy that would follow two weeks later.

I experienced several partial small-bowel obstructions over the course of my four month treatment. These are extremely painful and can be life threatening. My most severe obstruction landed me in the hospital for five days but resolved itself and did not have to be surgically corrected. I have since learned that adhesions from my two abdominal surgeries are the reason for my bowel obstructions. Over the past two years I have had several more, and have been hospitalized twice. This has become a chronic problem for me. I can’t help but think that if I had had only one surgery, my scar tissue and adhesions would not be as bad.

I do consider myself lucky to be alive. I am fortunate because my diagnosis took only two months, and my disease was detected at an early stage - with better survival rates. Still, my diagnosis was not without problems. I wish that my gynecologist would have consulted with a gynecologic oncologist when I was still on the operating table and ovarian cancer was suspected – then I would have received the appropriate treatment from the beginning and in one surgery. I was not aware of these specialists at that time and was never referred to one by my gynecologist. I can’t emphasize how important this is. These specialists have several years of additional medical education specific to treating gynecologic cancers and need to be involved early! I also want to point out that the CA-125 ovarian cancer screening test was clearly unreliable in my case. Finally, as I said at the start, I knew nothing about ovarian cancer and did not recognize the classic symptoms: extreme fatigue, backache, bloating, and feeling full after eating small amounts.

I am very hopeful, especially now that it’s been almost two years since I finished treatment, but fear of recurrence is always in the back of my mind. I drive myself crazy with worry every three months when I have my follow-up doctor appointments. Practicing yoga keeps me physically and mentally grounded so I’m not overwhelmed by the fear. I try to just “live my life” and value each day doing things that are important to me, with people who are important to me. I find that staying active and having a sense of humor helps – laughing a lot and having fun. And, being involved in MOCA and participating in the medical education programs is particularly rewarding for me.

I am a wife, and I am a mother of two daughters who are now ages 7 and 17. I want to survive this disease. I want to grow old with my husband – I want to raise my daughters – and I don’t want them, or anyone else, to live in fear of this devastating disease. So, it is with this in mind that I share my story. I hope that it provides resourceful information about symptoms, detection/diagnosis, and treatment. I hope it helps someone else. Ultimately, I hope it contributes in some small way to finding a cure.

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