This is part of a blog series from genetic counselors at the Basser Center. This was written by Jackie Powers, MS, LCGC.

“What would you do if you were me?” “What do other people decide to do?” As a genetic counselor, I’ve been asked these questions countless times. My message has remained consistent through the years: the choice to undergo a risk-reducing bilateral mastectomy is an intensely personal decision. Though I cannot make this decision for any patient, I feel there are some key things to take into consideration.

What are your primary goals? There is understandable fear regarding the elevated breast cancer risk among women with BRCA1 and BRCA2 mutations. Many women decide on preventative surgery to minimize the chance of ever developing breast cancer. This is oftentimes a “layered motivator.” It’s important for women to know there are options and surgery is not the only choice. Women who undergo screenings, such as mammography and breast MRI, compared to those who elect for risk-reducing surgery (with no previous personal history of breast cancer) have similar life expectancies. The main difference is that those who elect to undergo screening do have a higher incidence of breast cancer, but the expectation is that these cancers are detected early and are fully treatable. 

If a goal is to be there for your children, this is also achievable through surgery or high-risk screening. If a goal is to manage your fear of dying from breast cancer (like your mother or another family member), this can likewise be mitigated by surgery or high-risk screening. But if the goal is to avoid breast cancer all together, this is best addressed through surgery. Of course, knowing you want to pursue preventative surgery is sometimes not the only challenge; some know definitively they will undergo surgery, but struggle to decide when.

Lastly, it’s important to understand that we make decisions as part of a continuum.  What you feel today may be different from what you feel tomorrow. Goals can change and so can plans. If you commit to screening but find it is causing you continued distress (or frequent biopsies), your plan can evolve. 

Personal Testimony
We all make decisions that combine both information and emotion. In terms of the decision to undergo risk reducing surgery, personal testimony has an important impact. Losing a loved one to hereditary breast cancer can be a strong predictor for those who do elect for surgery whether shortly after receiving their positive genetic test result or for those who return to the decision years later. In terms of the death of a loved one, the younger an individual is at the time of this traumatic event, the more heavily it may influence a decision. As a genetic counselor, I honor these stories. These stories shape perceived personal risk, as well as cancer-related distress.

Age and Risk
There is no denying that the lifetime risk for developing breast cancer is significantly higher for BRCA mutation carriers than it is for the average woman. But what confuses patients is the concept of “age-adjusted risk.” The immediate breast cancer risk for a 25-year-old BRCA1 mutation carrier is ~1% (lower for BRCA2). Some may feel this is uncomfortably high (and that’s OK!) while others are shocked it’s not 87%, which is the highest quoted risk in the literature. On the other end of the age spectrum, as you proceed through decades without developing breast cancer, your risk is adjusted accordingly as you have outlived some of your risk.

How risk information is conveyed is very important. It’s this type of information that could contribute to one’s decision to decline, defer, or move forward with surgery. Through ongoing research, the medical community now has robust risk estimates for BRCA1 and BRCA2 carriers up until about age 80. This is something we encourage you discuss further with your medical doctor or genetic counselor.

Surgical Procedure
Consult with the experts, don’t be afraid to ask any and all questions, and bring a support person. Ask about pre- and post-operative recovery, both in the short and long-term. Meeting with a surgeon can be highly informative. It can also be helpful to talk to someone who has already gone through the surgery. You may speak with your medical doctor or genetic counselor if you wish to learn about peer-to-peer support resources, or contact an organization like Imerman Angels.

We are hopeful for the day when surgical removal of healthy breast tissue is not the “best” way to reduce breast cancer risk. This decision, even if seemingly easy for some, is still a difficult one, and one no one hopes they will ever have to make in the first place. Until this day arrives, the choice for risk reducing surgery will always be a woman’s personal choice.