6 frequently asked questions about double mastectomies

In 2013, Angelina Jolie opened up about her decision to have a preventative double mastectomy. Her decision shined a spotlight on a very important issue, but with increased attention, it left many women with questions, concerns and some with incorrect information about what it means to have a mastectomy and when someone should consider this option.

Dr. Anna Katz, an Advocate Medical Group breast surgeon with Advocate Condell Medical Center in Libertyville, Ill., answers some commonly asked questions about mastectomies.

Q – Angelina Jolie had a double mastectomy because she tested positive for the BRCA1 gene. If other women test positive, should they also consider this option?

A – Yes, the National Comprehensive Cancer Network (NCCN) guidelines do endorse consideration of risk reducing mastectomy (RRM) for some known genetic mutations that are associated with a high risk of development of breast cancer. These include the following genes: BRCA1, BRCA2, CDH1, PTEN, TP53 and PALB2.

There are a few other mutations, ATM, CHEK2 and STK11, that have association with breast cancer, but at this time, the NCCN says there is insufficient evidence to recommend RRM. If someone carries one of these mutations, we encourage them to meet with their breast surgeon and genetic counselor to discuss their options based on the presence of this mutation combined with any relevant personal and family history. This list does have ongoing changes so we encourage patients to check-in periodically with their breast surgeon and genetic counselor if they have had abnormal testing.

I also think it is important to note that even if you carry a mutation listed above, you do not HAVE to have RRM. It is one option. A second option is high risk screening and consideration of a medication to help lower your breast cancer risk. We encourage women to meet with their providers to discuss ALL of their options and select what works best for each individual.

Q – Under what circumstances should someone have a double mastectomy?

A – There are many different situations where someone might have a double mastectomy. The first is when a patient carries a high-risk genetic mutation and elects to remove their breast prophylactically. Another is when someone develops a breast cancer in one breast and then discovers they carry a high-risk genetic mutation so they elect to remove the other breast in order to prevent future events.

Some women elect to remove both breasts when they present with a cancer in one breast because they have a very strong family history of breast cancer, despite testing negative for a high-risk genetic mutation. We assume in this situation that it is possible that the family carries a gene putting family members at risk for breast cancer, but we just haven’t identified that gene yet.

Q – When should someone not have a mastectomy?

A – There are some women who are diagnosed with breast cancer and elect to remove both breasts despite being a good candidate for breast preservation, not having a strong family history and not carrying a high risk genetic mutation. We do try to discourage these women from making this decision, as their risk of a second breast cancer event is low (0.1 percent-0.6 percent) and removing their breasts will not improve their survival (and can have significant psychological and physical adverse side effects). The American Society of Breast Surgery has a consensus statement discouraging the use of contralateral prophylactic mastectomy in these situations.

Ultimately, however, I believe this decision is the right of any woman to choose what is best for their body. I will counsel and educate my patients, but at the end of the day it is their choice. It is paramount to have an open and trusting relationship with your doctor so women can make the best decision.

Q – When is it not necessary to get a mastectomy?

A – Women who are not at high risk based on personal, family and/or genetic risks and have cancers that are amenable to breast preservation should not consider contralateral prophylactic mastectomy for medical indications. A lot of considerations should go into surgical decisions, so every patient should take adequate time and thought when deciding what to do with their breasts.

On the other hand, certain cancers will require a mastectomy, for example, if the cancers are too large or multifocal. Also, certain women who are high risk for the development of breast cancer, such as carriers of BRCA, often opt to have a double mastectomy in order to lower their risk to under 5 percent.

Q – What should women know before they get a mastectomy?

A – I usually spend an hour or more counseling patients about their surgical decisions. If someone has decided to move forward with a mastectomy, they need to understand there are significant emotional, psychological and sexual side effects in addition to the normal surgical risks. However, it is all about risk benefit. Some people need mastectomies for medical reasons, so we have to accept these side effects. This should all be a very thoughtful and educated decision with their provider.

Q – Does a mastectomy really improve someone’s chances in beating breast cancer?

A – If someone has breast cancer and their tumor is amenable to breast preservation, there is equivalent survival when we look at breast preservation versus mastectomy.

However, some tumors are not amenable to breast preservation. In addition, high risk women may elect to have prophylactic surgery so they can potentially avoid future cancers, which could require treatments such as chemotherapy.