If I Can Make the Decision to Do It
So, what does a person with an 87% lifetime chance of developing breast cancer do with that knowledge? I have been asking myself this question since I first learned of my BRCA mutation last spring.
Right now, I am doing enhanced surveillance. As described in my last post, that means an annual mammogram, an annual MRI (so 2 images each year, 6 months apart) and a clinical breast exam every 6 months (basically to coincide with the imaging). But these don’t prevent breast cancer, they only mean that you’ll find it early if you get it. My risk of getting breast cancer is not affected by this enhanced surveillance.
The only option for reducing my risk is a prophylactic double mastectomy (PDM). In other words, if I want to reduce my risk, I can have my healthy breasts removed.
Many women make this decision every day. I have not.
This is an incredibly difficult decision. I think the biggest reason I can cite is–How can I make a decision to remove healthy breast tissue? Right now, I have no evidence of breast cancer. There is still a small chance I will not develop ever breast cancer. Do I remove my breasts on the chance, however likely, that I will get breast cancer later? What if I’m one of the 13% that don’t get breast cancer? I realize that sounds incredibly naïve but I can’t get it out of my calculation.
Some have suggested that the reason I can’t fully wrap my head around my risk is that I have never watched a woman go through breast cancer close up. This is true. My grandmother died of ovarian cancer when she was in her 70s. My great aunts who had breast cancer died before I was born. I have not had to watch a mother, sister, or aunt suffer through chemo and/or radiation.
Only two close relatives have developed breast cancer. One is my sister-in-law. She is not BRCA-positive and her cancer was found very early. She had a double mastectomy but did not require chemo or radiation. While I would never say that anyone with breast cancer is “lucky,” she certainly had an easier time than most.
The other is my BRCA-positive Chaya sister. She developed an aggressive breast cancer that has required intensive chemo in addition to multiple surgeries (which are ongoing). Her treatment was much more challenging than what my sister-in-law faced. But because of COVID, I have supported my cousin from afar, and have not seen her in person during her treatment.
It’s not a stretch to say that if I develop breast cancer, my experience will be much more like my cousin than my sister-in-law.
Some doctors encourage their BRCA patients to get a PDM by telling them, “You’re going to lose your breasts at some point anyway, may as well have them removed before you get sick, and thus avoid cancer treatment. You can make decisions without the cancer overshadowing everything.”
The risk boils down to this—do I want to bet on the 13% chance that I won’t develop breast cancer and continue surveillance for the next 17+ years, or do I want to put myself through mutilating surgery now, while I’m healthy, to likely avoid cancer and chemo later?
When I look at it that way, the answer is obvious. Yet I can’t bring myself to do it. There is so much thought that goes into this. I’ll examine this in upcoming posts.
cisforchaya.com 