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

Barbara Tako
Barbara Tako

Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools—We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at,or

"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.