Last week Gina Kolata reported in The New York Times that ovarian cancer is largely a misnomer. The disease that, in the US, causes more deaths than any other gynecologic cancer seldom starts in the ovaries but instead in the fallopian tubes—and removing the fallopian tubes can cut a woman’s risk by nearly 80%.
My sister sent me the article the morning it ran, and a few other friends did so throughout the day. I read it over and over with a strange, private satisfaction, because I had known this for almost a year. It has been that long since I went against standard medical advice and declined to have my ovaries removed as soon as I was done having children—the recommended path for reducing cancer risk in someone like me. Instead, I had opted for a salpingectomy, or the removal of my fallopian tubes.
I was diagnosed with the BRCA1 genetic mutation at 30, a few months after my aunt died of breast cancer, in the same month my mother was diagnosed. It seemed like a lot of bad luck for one month. My mother tested positive for the mutation, which meant I had a 50% chance of carrying it too. One easy cheek swab later, and I had my answer. It instantly changed my relationship with my body, my future, and my doctors.
The breast cancer risk that comes with carrying the BRCA1 gene—up to 87% over a lifetime—is the risk factor most people know to ask about. And while the risk of ovarian cancer tied to the gene is lower—around 40%—it was this number that scared me more. First of all, ovarian cancer is virtually impossible to screen for. I get my CA-125 levels checked, a blood test measuring proteins that can act as a tumor marker, and pelvic ultrasounds yearly, but those methods typically only signal disease once it’s advanced. It’s the cancer that feels like a death sentence, and mine was a real risk.
Once I finished breastfeeding my younger child a year and a half ago, I knew it was time to make a decision about my future. I had always resisted having my ovaries removed because of all the side effects, and I haven’t had a preventative mastectomy yet. I (strangely and miraculously) have no family history of ovarian cancer, but I do have a family history of dementia, which early surgical menopause can raise the risk of, along with osteoporosis, heart disease, and a significantly diminished quality of life, sooner than any of us plan for. I was in my 30s. I really didn’t want to go through menopause yet.
My doctor didn’t think I was necessarily making the right decision, but she found two studies she thought I should consider participating in. I wasn’t new to BRCA research—I’d already enrolled in one study, sending my own pumped breast milk to a lab across the country to see if my future could be detected in the milk my babies drank (the study is ongoing, but I send any health updates to the lead physician every once in a while). But when I spoke to the coordinators of the studies, I learned the lead physicians of both still recommended my ovaries come out by 40. With only two years left until that number, I was fighting to keep them.
“But what about quality of life?” I asked one of my surgeons.
“What about survival?” she replied.
Around that time, I kept reading that early studies were pointing to the fallopian tubes, not the ovaries, as the real origin point for most of these cancers. What I didn’t know then, and only learned from the New York Times piece, is how long this notion had been floating around.
