Deciding on a Prophylactic Double Mastectomy after Breast Cancer

Breast cancer survivor thinks through her decision about a prophylactic double mastectomy after new genetic test results show a significant risk of recurrence.

I think my breasts just hit the cutting room floor in the oncologist's office yesterday. It seems strange. After all, I am more than seven years out from breast cancer. Seven years ago, I did the available genetic testing, which came back negative, and I chose a lumpectomy which was followed by chemotherapy and radiation and then five years on anastrazole.

At my regular visits to the oncologist, she began in recent years to suggest that one thing I could do now was go back for more genetic testing because there are so many more genes that they know about now that are related to breast cancer. I had been diagnosed with breast cancer in my forties which was considered young. Several things happened that prompted me to finally go back for more genetic testing—my oncologist's suggestion, my mom's recent death from metastatic breast cancer, and a thickening in my lumpectomy scar tissue that was worisome to me. I honestly didn't really expect that anything would come of it. What are the odds?

I was shocked to learn that I test positive for the PALB2 abnormality. I now have some decisions to make. My understanding is that two options are monitoring the breasts with alternating mammograms and MRIs every six months or having a prophylactic double mastectomy. One problem is that the science is ahead of the treatment knowledge. Still, I don't like what I perceive to be my statistics. Before knowing I had the PALB2 gene abnormality, I had been under the impression that there was a 15% chance of a breast cancer recurrence for me—I slept pretty well at night and I worried for seven years.

The PALB2 appears to kick up that cancer occurrence/recurrence percentage to somewhere around a 30 to 50 percent chance of a new breast cancer or recurrence in the remainder of my life. If I remove both breasts, my understanding is that my number drops to 10% or less for a new breast cancer or a recurrence. Yikes.

Now it is time to decide what I need to do to sleep at night. What is my number? That is, what is my decision? More careful monitoring or a double mastectomy? It is a very individual and personal choice and everyone's family history and medical circumstances are unique.

In the oncology doctor's office, my eyes filled with tears at the possibility of reducing my breast cancer risk and shedding a lot of that worry. At the same time, there is a deep sadness associated with having my breasts removed and worry because it is not a minor surgical procedure. As for the breasts, I am a little attached — I have lived with them for more than fifty years. On the other hand, I am in my fifties now, and I really don't want to face cancer and possibly chemotherapy and a double mastectomy in my sixties, seventies, or beyond if a prophylactic double mastectomy now will prevent that. I could prevent that for myself and for my loved ones around me. Hmm.

It is a difficult and major decision for me. There are lots of emotions and a limited amount of data at this point. Knowledge is power, but limited knowledge — what is that? The rational choice is to make the best decision we can with the knowledge available at the time and move forward. I will be meeting with plastic surgeons and moving forward with a prophylactic double mastectomy with a heart that is holding both fear and hope. All advice and thoughts are welcome. Thank you.