A fair exchange
Earlier this week I had an operation, so just now I’m feeling fab. Physically I have a bit of pain and what the medical world terms ‘discomfort’, but emotionally I’m mainly happy. Happy that it went well, that it’s over, that the surgeon and his crew said that everything they saw inside me (and the couple of bits they removed) looked in good shape.
Relief!
It’s the weeks and days before an operation that I find hardest. This is when I repeatedly run through my decision-making – have I been thinking things through clearly? Does it really make sense for me to have a bilateral salpingectomy (fallopian tube removal) now and to delay the oopherectomy (ovary removal) until I’m in my late 40s? I look again at the mortality/ survival statistics for BRCA1 women. Here’s what they tell me : without preventative surgery BRCA1 women have an up to 60% chance of developing ovarian cancer by 70 years, with diagnoses beginning to ramp up when women are in their 40s. I am 43.
These stats chime quite well with my family history, which includes at least one ovarian cancer death (possibly as many as three). The known ovarian cancer death was my grandmother’s, Barbara. She probably developed the cancer in her early 50s, but that’s just a guess. Then, there are my paternal aunts who would likely have developed ovarian cancer if breast cancer hadn’t got them first.
It was clear I should do something, but the official advice to remove my ovaries and fallopian tubes – and, in so doing, embrace surgical menopause – didn’t seem right. I couldn’t bring myself to do it. Maybe I’ve read too many quality of life studies in which women who undergo surgical menopause report significant problems. Perhaps I’ve been conned into believing that functioning ovaries really are the secret to female youth and happiness.
Whatever the truth is, I finally forced myself to stop procrastinating and chose a third way. Instead of doing nothing, I submitted to an operation that everyone agrees has reduced my risk of developing ovarian cancer by a significant but unquantifiable degree. When I’m closer to 50, I’ll go under once again to remove my ovaries and cut my risk even further.
Will this work? I don’t know. Neither do the doctors. It’s a gamble. If I develop ovarian cancer within the next few years I’ll have lost the bet. But I think the odds are in my favour. (I’m one of those people who never gambles on the horses or football, but I will gamble on what truly matters, like my life.)
So this week I exchanged my fallopian tubes for a greater chance of a long life. I want to be clear: I did not want to have to do this. I wanted to keep my fallopian tubes. But I understand that I have to give up parts of my body in exchange for the chance to live beyond 65/66. Very few women on the side of my family affected by BRCA1 mutations in the two generations above me have made it beyond 65/66. In fact, only one made it beyond that age – and she did so after having survived two different cancer diagnoses. Clearly, she is tough as nails. And my role model.
Almost two years ago I began by giving up my breasts (and a muscle from each of my inner thighs to make new ones). Now my fallopian tubes. A few years from now it’ll be my ovaries. The way I see it, gradually, I’m giving up all the removeable high-risk tissue. It is hard to do this. On the one hand I am so, so happy the operation went well, but that doesn’t mean that I didn’t lie in bed the first night after this latest operation and cry.
Is it a fair exchange? Body parts for a full lifespan? I think it is. That’s why I do it.
geneticgrrl 
Brave and inspiring- well done.