Seven years ago, after a lumpectomy, my mother completed her chemotherapy and radiation treatment for breast cancer. She followed that treatment with five years of Arimidex, an estrogen-lowering drug. Statistically, based on her Oncotype DX results and after all of her treatments, she still has an 18 percent chance of dying from breast cancer within 10 years of her diagnosis.
About two years into the Arimidex treatment, my mom called me, more than a bit discouraged. She had been experiencing joint and bone pain on a consistent basis from the treatment, and she was having trouble writing. The chemotherapy drug, Taxol, had already caused her to lose much of the sensation in her feet and toes. Now the Arimidex had done something similar to her hands. She found it difficult to write, unscrew lids, play the piano or type at the computer. She said, “These treatments may save my life, but they sure aren’t a great answer to breast cancer. You don’t want to get it in the first place.”That’s when I started thinking about a prophylactic mastectomy, also known as preventive mastectomy.Several years later, I’ve made the decision to do it. These are the factors I found continually coming to my mind in the decision-making process:
1. Risk. No one can tell you what your exact risk is for getting breast cancer. Even the average woman has about a 1 in 7 chance of getting it at some point in her life. To me, that’s already relatively high risk, especially when compared to other cancers. Family history can increase that risk. Having close relatives who had pre-menopausal breast cancer automatically puts you into a high-risk category. Both my mother and her only sister have had breast cancer. My mother was postmenopausal in her early 60s upon diagnosis. My aunt was premenopausal. She had it bilaterally (in both breasts) and after a recurrence, ended up with bilateral mastectomies. One of her daughters had a lump with atypical cells removed when she was in her 20s.
Risk can also come from the paternal side. My dad had four brothers and no sisters, so there is no good point of reference there. But both of his dad’s sisters (my great-aunts) had uterine cancer in their 30s and breast cancer in their 40s. Both had double mastectomies by the time my parents were married.
Given my family history and dense breast tissue (more of a diagnostic issue than an actual risk issue), I have at least double the normal risk—and probably a bit more than that. If I had a sister, that might give me more information. If my dad had any sisters, that would have provided more to go on as well. The fact is, you can’t precisely know your actual risk, but most women can ask a few questions and get a general sense of their potential risk.I don’t know if I have “the breast cancer gene.” People are usually referring to BRCA1 or BRCA2 when they refer to the breast cancer gene. However, there are at least four other genes related to breast cancer that we know of and more than that are under study. When my gynecologist mentioned possibly having the genetic testing done, I decided that even if I did not have one of the BRCA mutations, I could well have another one they don’t test for yet, and my risk was still high enough with family history for me to want to do something about it.