Finding a New Mutation Puts Some Breast Cancer Survivors Ahead of Research

"Garden variety" breast cancer is no longer the norm thanks to the discovery of more genetic mutations.

Two years ago, I put the bottle of anastrozole down by the household batteries and other things going to the recycling center. It felt like throwing away the safety net, even though I knew it made sense in my case, at that time, after talking to my oncologist. I remember feeling that chemotherapy and radiation were safety nets, too. We were actively fighting my breast cancer. None of those things provided a guarantee. Cancer is a lifetime of uncertainty.

Now I discover that I am positive for the PALB2 genetic mutation, one of the ones that has been discovered more recently. After talking to my oncology doctors, it sounds likely that a double prophylactic mastectomy would significantly lower my risk of a new breast cancer or recurrence — from an estimate of 30 to 60 percent to down to less than 10 percent. I have a lot of questions, given my current age and past treatments, but unfortunately, there are not a lot of answers (study results) yet.

I remember when my oncologist and I made the choice to stop my anastrozole after five years. Now I am in another situation where there is uncertainty. The research isn't in yet for my particular situation (my mom died from metastatic breast cancer and I am a melanoma survivor, too). Each of us has a somewhat unique situation.

There were pros and cons with my chemotherapy, too. I was willing to undergo chemotherapy to improve my odds based on my Oncotype DX score, but now I cope with my chemo brain and other side effects. There are no guarantees. So often there are trade-offs for medical decisions. I have made another medical decision: to have a double prophylactic mastectomy.

Am I totally comfortable with my choice? Nope. Will I eventually sleep better at night? Yes. Two diagnoses of cancer have taught me that the only guarantee in life is that life is uncertain. I actively work to become more comfortable with uncertainty. It seems like the only rational approach. I remind myself that being "in control" is an illusion much of the time anyway. No, I am not in charge, but I sure like to think I am.

There are other things that come with my uncertainty: fear, stress, worry. I am afraid of the cancer returning. I am stressed that I might not be vigilant enough. I still react whenever I see or hear something about cancer, or step on the bathroom scale, or experience something that might be a symptom. This is the life of a cancer survivor and I am grateful that life goes on.

So, why would I put myself through another major surgery? I will for me. I will for my family and friends. I will be proactive and yes, a bit (OK, a lot) of a control freak. We all know there is no certainty. We all know I am not in charge (and that is probably a really good thing). We each make the best decision we can in the current moment. This decision gives me the best odds, for now. I need to know that I did everything in my own power to prevent cancer. After surgery, I will observe and wait and remain vigilant, and I will wait for medical research to catch up.