My risk tolerance is generally low. At heart, I’m careful and cautious and would rather play it safe when I can.
I do my best to avoid risky situations. I don’t skydive – the chute might not open. I don’t go for amazing tropical helicopter rides when I’m in Hawaii – those choppers crash sometimes, you know. I wait for the walk sign, even when there is absolutely no traffic in sight.
Probably the biggest risk I ever took I did without any real awareness of its truly precarious nature. My husband and I married very early, while I was still in college, which statistically is certainly a risky business as far as the odds of staying together. The cautious (or smart?) move would have been to wait, but we were in love and young and somehow just “knew” we would make it work. We felt invincible, for no really good reason. Looking back as I’ve gotten older, of course, I’ve realized what a risk we took. Happily, it worked out – we are coming up on our 31st anniversary this February.
But at the time we got married, I was rather oblivious to the chance we were taking. Learning that I have a BRCA mutation, with its attendant breast and ovarian cancer risks, I’ve been forced to consider risk and my tolerance for it in my life in a whole new way. Somewhat to my surprise, I’ve chosen to live with a degree of breast cancer risk that I might not have expected I could tolerate, doing surveillance and chemoprevention rather than preventive mastectomy.
Though in many ways I remain risk averse, at least as far as skydiving and helicopter rides and even waiting for the walk sign…
Life doesn’t always allow us to do what we would prefer, however. I’ve been stretched and challenged over the years, pushed outside my cautious comfort zone. Not long after I had left a well-paying job to stay home with our son, my husband got an opportunity to join a start-up company. He’d been at a big, solid Silicon Valley firm but this would be a much better fit. I was incredibly anxious about the risk we were taking with this change – did I mention I was pregnant with our second child at the time? My natural inclination would have been to say no, to ask him to stick with the safer option. But he needed to do it and I managed to support him in doing so, despite my difficulty living with that kind of risk.
And I guess over the ensuing years I’ve increased my risk tolerance in some areas, perhaps without really being aware of it. My BRCA+ journey, from July of 2010 until the present, has brought that fact into sharp relief.
As a woman with a BRCA2 mutation, I’m at high risk for breast and ovarian cancer. The ovarian cancer risk is about 11-17%, but there is really no effective screening. So upon the advice of my doctors, and given that our family was complete, the choice to have my ovaries and fallopian tubes surgically removed was clear — even that relatively low risk was not one I was willing to take, having seen my mother’s experience with ovarian cancer.
The breast cancer risk is another matter. With a BRCA2 mutation, I probably have about a 45% risk of developing breast cancer, though some studies have found higher risks (55-60% or even 85%). My doctors left it up to me to choose between preventive surgery and high-risk surveillance. This question, faced by many BRCA+ women, is a very individual decision and the way we each answer it depends upon many factors – age, family history, and that slippery question of “risk tolerance.”
Both sides of the coin carry some risk. If I chose prophylactic bilateral mastectomy or PBM, I would be having one (if not more) major surgeries, none of which would be easy and each of which would carry a risk for complications. But my risk of breast cancer would plummet, not to zero but to a very negligible figure. That risk would be minimized.
If I chose high-risk surveillance, I would be screened every 6 months, by mammogram/ ultrasound in the winter and breast MRI in the summer. Unlike with a PBM, I wouldn’t face the certainty of an immediate surgery, but instead the ongoing possibility of a cancer diagnosis and subsequent surgery at a later time. My breast cancer risk would remain about the same, that 45% or more figure, with the goal of finding it early if it does occur.
I chose the latter option, that of enhanced surveillance. If I can avoid having a mastectomy, a big and challenging surgery, I would like to do so. And apparently I am willing to live with the attendant risks. I sort of surprised myself with that one.
“Every 6 months” comes around pretty fast. I’ve had several biopsies and false alarms, but so far all is well. Though I am well aware that one of those alarms, one day, may not be false. I have even started taking Tamoxifen, a drug that my doctor thought I was a good candidate for and which may reduce my breast cancer risk, but which also carries the risk of various side effects. She thought the benefits outweighed the risks, for me, and I took the plunge. So far, so good.
So I’m going forward, risk acknowledged and (I guess) tolerated, to a degree I never would have expected. These aren’t easy questions or easy answers. Each woman faced with them will wrestle with them in different ways. Angelina made her choice for a PBM, as some women do. Others, like me, are taking the path of surveillance and/or chemoprevention. And at least part of that decision-making process comes down to that so-elusive issue of “risk tolerance.”