Story by Gretchen Salsich
St. Louis, MO

In December 1997, my sister Heidi, age 33, was diagnosed with stage IIIc (advanced) ovarian cancer. While her story is tragic (she was married with five children, ages 1-9 yrs.) the real tragedy was the extensive process it took to confirm her diagnosis. For several months, she had been experiencing vague low back pain, which was attributed to a fall off a ladder, but then she developed rectal bleeding. Thinking the bleeding was gastrointestinal (g.i.) related, Heidi consulted her general physician who eventually referred her to a specialist. The diagnosis was hemorrhoids related to the birth of her last child. When the hemorrhoids did not resolve, her physician ordered an abdominal ultrasound, which showed a suspicious mass, still thought to be g.i.-related. Ironically, that day Heidi’s husband bumped into her OB-gynecologist in the parking lot during a routine fire drill. Striking up a casual conversation, the physician asked how Heidi and the baby were doing. Upon hearing about the “g.i. problem” he insisted on seeing Heidi in his office that day. A CT scan confirmed the diagnosis of ovarian cancer.

While the news was devastating, cancer was not unfamiliar to our family. My mother’s mother had three primary (unrelated) cancers in her lifetime; my mother’s sister died at age 51 of ovarian cancer, and her other sister had breast cancer. Despite this strong family history on my mother’s side, we knew very little about our individual risks for developing cancer. But Heidi was adamant that we learn more and do whatever we could to avoid her situation, not an easy task as the symptoms of ovarian cancer are vague and mimic many benign conditions. It struck me that Heidi never felt sorry for herself, but she would talk about how bad she would feel if one of us got cancer. Perhaps it was that I was entrenched in writing a dissertation and therefore obsessed with data and evidence, or maybe it was just my need-to-know nature that compelled me to find out more about what cancer risk numbers meant. In my readings it seemed that there were a lot of assumptions made in calculating risk (e.g. if there is a genetic mutation in this individual then your chances of obtaining the mutation are this. If you have this mutation then your risk of developing cancer is increased to that.) My sisters seemed content with believing that their risk was the greatest it could possibly be. I wasn’t so sure. Regardless, we all proceeded to do what was recommended by our physicians for heightened surveillance: biannual rectopelvic exams, transvaginal ultrasounds, and blood tests to measure the level of CA125 (tumor marker for ovarian cancer). I entertained the idea of having genetic testing done to satisfy my need to know, but the thought didn’t transition into action. Until 15 months later.

In March 1999, my mother was diagnosed with stage IIIc ovarian cancer. And something she said still haunts me. “If I had known that a hysterectomy could have reduced my risk of cancer, I certainly would have had one.” I knew then, that I simply needed to know what my risk was and whether or not there was something else I could do to minimize it. I was convinced that I wanted genetic testing, and because a family member who has cancer should be tested first, my mother agreed to have the test. She was positive for a mutation in one of the genes associated with breast and ovarian cancer (BRCA1). Heidi tested positive for the same mutation. I, on the other hand, tested negative.

I must admit, I was surprised by the wide array of emotions I felt upon hearing and digesting the news of a negative test result. Relief? Sure. But sadness and guilt were very prominent too. I’m thankful my genetic counselor warned me about these because, knowing me, I would have felt guilty for feeling guilty! As I processed the information, I realized that not having the genetic mutation did not mean I would never develop breast or ovarian cancer. It did mean that my risk was reduced to that of the average female in the population. What it also meant was that I did not have to continue my heightened surveillance, but I did have to continue having routine pelvic exams, breast exams and mammograms as recommended for the average woman. I do these religiously.

My sisters have chosen to deal with our family’s known genetic mutation in their own ways. Maria tested positive for the BRCA1 mutation, and made the difficult and brave decision to have two preventative surgeries: removal of both breasts and removal of her uterus and ovaries. I won’t attempt to describe her decision process or her emotions. That is her story. But I respect and admire her on a daily basis. She has significantly reduced her risk for both cancers, motivated in part by her determination to see her children grow up (something Heidi was not able to do). Heather and Bridget have chosen not to have genetic testing at this time, but they continue heightened surveillance.

My mother and Heidi battled ovarian cancer bravely and together. I was amazed by the strength they found in each other and thankful for the camaraderie. Unfortunately, advanced ovarian cancer offers little chance for survival, and my mother and Heidi were more examples of this. Mom died in October 2003 and Heidi died six months later. Their void remains and I expect always will, but I am determined to continue my part to practice healthy, risk-reducing behavior (maintaining optimal weight, exercising, not smoking, etc.) and obtain routine exams. I am also committed to educating others about what risk numbers really mean and why certain interventions are recommended. Maybe one day an effective screening method for early detection of ovarian cancer will be available, such that some of the current radical prevention methods will not be necessary. How I look forward to that day!


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