Survivor Stories — Carole Fagella
I I am a 53 year old retired educator who was diagnosed with epithelial ovarian cancer (Stage IIIC) in June 2007 after experience common symptoms of ovarian cancer: bloating, severe constipation, lower groin pain, distended abdomen, and heaviness in the pelvic area.
My route to diagnosis was a circuitous one—as most ovarian cancer patients will testify, this is more the norm than the exception. It was twelve weeks from the onset of the first symptoms until the definitive diagnosis. I was under the care of several doctors during this time, but the source of the problem was not detected until the disease had spread into an advanced stage. I think of this period as the “time I was not properly diagnosed” as opposed to the “time when I was misdiagnosed” because several doctors were actively treating my symptoms, but none had discovered the root of the problem.
My symptoms began with a lower groin pain on my right side that felt like ovulation. I had had an endometrial ablation four years prior, was no longer menstruating, and could not monitor any periodic distress. The pain persisted for several weeks but I chose to wait for my annual physical to inform the internist. Upon feeling my right side, my general practitioner felt a hardening of the abdomen and ordered an immediate CT scan anticipating possible appendicitis.
The CT scan showed two liquid ovarian cysts and the scarring of a recently ruptured cyst on my right ovary. I was assured by the emergency room doctor who presented the results of my scan that liquid ovarian cysts are common occurrences and more important are “usually, always benign”. I was told that the cysts would probably burst on their own in seven to ten days and my symptoms would be relieved. I was released from the ER with a medical release form stating “no follow-up needed.”
Within a week, I felt a strong piercing pain in the right ovary, and indeed the constant pain of the last few weeks did stop. I was asymptomatic for about two more weeks.
After two weeks I became severely constipated. When diet and over the counter laxatives didn’t correct the problem, I was sent to a gastroenterologist for the first of several visits to relieve the gastric difficulties. He diagnosed an impacted colon and I began a regimen of prescription drugs to relieve the constipation. As the weeks persisted, my constipation worsened and a feeling of fullness in my pelvic area developed. My abdomen became bloated, making it impossible to fit in my clothing. Leg pain from added weight was precluding me from daily activities. By this time I was seeing the gastroenterologist weekly. He prescribed medicine for Irritable Bowel Syndrome although not all my symptoms were indicative of that disorder. I was to remain on this new med for six weeks and then have a CT scan if no improvement was evident.
I was leaving in five days for an 80th surprise birthday party in Denver. Ever the pragmatist, I was reluctant to travel with an abdomen that resembled a five month pregnancy, fearing my health insurance may not cover an out-of state hospitalization should that arise. I walked myself into the very same emergency room where my initial CT scan had been conducted ten weeks earlier. I told the triage nurse that I was not leaving there until they told me what was in my belly. AND THEY DID. The scan revealed ovarian cancer in Stage 3 with tumors in the peritoneal cavity—on but not invasive to my liver and on but not invasive to my colon. The diagnosis was as much of a shock to me as to the doctors treating me over the past few months.
My treatment plan began with debulking surgery and a four-month regimen of IV and IP combination Taxol/Cisplatin chemotherapy. During my treatment I took part in support groups to discuss my emotional health with others going through the same. Pathways for Women and The Wellness Community were part of a big support system in my life.
I am happy to say that I’ve been in remission from the disease since October 2007.
I am presently participating in a clinical trial at Memorial Sloan-Kettering Cancer Center, which is testing vaccine therapy to prevent recurrence of OC. In November 2008, I pursued genetic testing and found that I am BRCA 2 positive, inheriting a gene mutation from my paternal grandmother who was a breast cancer survivor. I recently underwent a prophylactic double mastectomy to prevent contracting breast cancer because I am at high risk.
I have experienced the life altering diagnosis of cancer but hope to never let it alter my life in a negative way. After the difficult journey through illness and recovery I realized a need to work for the ovarian cancer cause for its voice must be heard above its silence. As a result I have become an activist for ovarian cancer research and awareness since my diagnosis almost three years ago.
Although cancer has affected my life, I do not want to give it the power to rule my life. Following a health regimen of eating well and exercising regularly improves my physical well being. Attending support groups and participating in community activities aids in my emotional health.
Since my cancer diagnosis, I have still been able to pursue the things I want to do, like attend theater performances and enjoy the arts. Travel has also always been my greatest passion. I am happy to say that since I have been diagnosed. I have visited Scandinavia, journeyed to the Taj Mahal and stood at the Great Pyramids of Egypt.