In July of 2003 I was diagnosed with peritoneal primary serous adenocarcinoma.

Primary peritoneal has only recently been recognized as a distinct cancer type. It is closely related to epithelial ovarian cancer, with similar treatment and prognosis. It develops in cells from the peritoneum, which are very similar to the epithelial cells on the ovary surface. Women who have had their ovaries removed for other reasons can develop this kind of cancer, which formerly was simply grouped with ovarian cancer.

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). These cells are found in .2 of 1% of pap smears, and researchers have found cancerous or precancerous conditions in nearly 30% of cases. So, AGCUS requires further diagnostic studies to determine the cause. I immediately had a transvaginal ultrasound and then a uterine biopsy with a gynecologist. I then had a colposcopy, 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 a bilateral salpingo-oophorectomy.

I was sent home from the hospital the day following surgery after having been told earlier by the surgeon that I was “the luckiest woman alive” because I did not have cancer. It turned out the pathology report states that the pathologist had discussed the diagnosis of peritoneal cancer with the surgeon before I left the hospital. My husband and I went home not knowing this and phoned all our family and friends with the great news that no malignancy had been found.

Five days later, on July 23, the surgeon phoned to tell me that I did have cancer. It had shown up in the pelvic washings and would require chemotherapy. This was an absolutely surreal moment. My husband and I were stunned.

I began chemo on August 11, and returned to work full time the following week. I finished the six cycles of Taxol and Carboplatin in early December 2003. Because of the poor communication with the surgeon, I also changed to a different doctor in the same gynecological oncology practice.

In June of 2005, I found out that despite regular check ups and CT scans, I had developed a 7 centimeter tumor that my new doctor said was 90% 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.

My doctor wanted to me to have a biopsy at another facility and had my husband hand carry the films there for the doctor’s immediate attention. We then waited for two whole days with absolutely no communication from that office. Our repeated phone calls reached only answering machines. It turned out that the physician was out of town, and no one in his office felt able to respond.

In desperation, I decided to e-mail a highly respected physician at yet another hospital. I had met her when doing volunteer speaking on ovarian cancer in 2004. I liked her and had thought that if my medical condition deteriorated, I would seek her expertise. In retrospect, I think it was not so much her resume as her scrupulous, caring and straightforward communication style.

I received an immediate answer from her and within two days 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 on June 23, 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, with Neulasta booster shots.

The two best tools for diagnosing this type of cancer, CA-125 and CT scans, are not that helpful for me. My CA-125 after my first surgery and before chemo was 14. It went down to a 4 in April of 2004, then crept up to a 10 in March of 2005 and then to 11 in June. All of these readings are within the normal range of 0 to 35. When my tumor measured 2 centimeters, my CA-125 read 5. Following my second surgery my CA-125 went up to 120 and then came down to low single digits. 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.

I feel very blessed for the quality of medical care I am now receiving—not that my previous care was impersonal or careless. I do, however, feel that key aspects of my illness were overlooked, and I was helpless to affect the proceedings. I had no reason to question the communication in July 2003, telling me I did not have cancer. I had no reason to question the CT report from December 2004 telling me I had no tumors. In both cases cancer was present. I couldn’t get people to return my phone calls or explain these discrepancies. Now, in different hands, I think we are getting the honest communication we need to deal with our reality.

On this cancer journey, fear and uncertainty play large parts in our lives. 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.

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.

Straightforward communication matters. When my father was diagnosed with advanced prostate cancer in the 1960’s, 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 a surgeon do virtually the same thing to me in 2003. Fast forward two years, I can’t explain why in the interaction (or lack of it) between my radiologist and my gynecological oncologist, they let a 2-centimeter tumor go untreated for six months, when the whole purpose of the CT-scan is to find tumors when they are at that size. Even my untrained eye could see the tumor on the film! Communication is not the cure for cancer, but it is about the only way a patient can have a role in fighting it.

My purpose here is not to criticize, but to 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. When I have done this, I have repeatedly heard the phrase, “Oh, I thought I was the only one.” You are not the only one, but you can only learn this from others.

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