Is a Risk-Reducing Mastectomy Right for You? It’s Personal

Risk-reducing mastectomies can drastically reduce the chances of developing breast cancer. It’s a highly personal decision, and it’s important to consider your family history, risk, and nonsurgical options first.

In 2022, Dale Bodden learned that her sister had ovarian cancer. The diagnosis prompted Bodden to speak with her doctor since she knew that it increased her risk of developing breast cancer.

She consulted a genetic counselor, underwent testing, and learned that she had a BRCA1 gene mutation.

Read on to learn what she did about it and what the BRCA1 gene mutation might mean for you.

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What does it mean to have a BRCA1 gene mutation?

While the mutation doesn’t guarantee that you’ll develop breast cancer, the CDC indicates that it increases the risk.

Bodden met with a medical oncologist, genetic counselor, and breast surgeon at Houston Methodist Willowbrook Hospital. They gave her two options. One was a screening protocol with either a mammogram or a breast MRI every 6 months and the potential for a drug regimen that might reduce the cancer risk. The other? A risk-reducing mastectomy.

She chose the latter, undergoing a bilateral mastectomy in August 2023.

“While the mammogram and MRI procedures are not necessarily difficult, the wait for […] findings and the resulting anxiety associated with that every single time was not how I wanted to spend the rest of my life,” Bodden says. “Additionally, screenings don’t actually reduce the risk. Only surgery reduces the risk.”

Today, Bodden says she feels “great” and is training for several hikes this year. However, that doesn’t mean the decision was easy — for Bodden or for anyone else faced with it.

As with any procedure, there are benefits and risks, pros and cons. While healthcare professionals believe in the data behind risk-reducing mastectomies, they understand that the decision is highly personal. The best way to decide whether this procedure is right for you is to be informed about your options and risks.

What is a risk-reducing mastectomy?

Risk-reducing mastectomies, or prophylactic mastectomies, are sometimes called “preventive.” However, current literature and healthcare professionals often refer to them as “risk-reducing” to clarify confusion.

“The terminology reflects the totality of it: It’s risk-reducing,” explains Brian O’Hea, MD, the chief of breast surgery at Stony Brook Medicine and director of the Carol M. Baldwin Breast Care Center. “It reduces risk, but it’s not totally eliminating.”

There are two types of mastectomies:

• Bilateral prophylactic mastectomy: A person has both breasts removed before they’ve received a cancer diagnosis.
• Contralateral prophylactic mastectomy: If a person has already received a cancer diagnosis in one breast, they may opt to have the other one removed.

During a risk-reducing mastectomy, a surgeon removes most of the breast tissue from one or both breasts.

It’s important to note that surgeons can’t remove all breast cells. And as the American Cancer Society points out, these cells may eventually develop cancer.

Still, the data indicates that risk reduction is significant, which appealed to Bodden. Her doctors told her that her risk of developing breast cancer went from 87% to 3%.

A 2018 review points to data suggesting that risk-reducing mastectomies could lower the chances of developing breast cancer by 85–100%.

The authors note that a risk-reducing mastectomy could reduce the risk of developing breast cancer by 95%, although the risk would decrease by only 90% in people who have a first-degree relative (a mother, sister, or daughter) with breast cancer. The authors also emphasize that it’s essential to carefully assess risk before proceeding.

Reasons to seek risk-reducing mastectomy

Doctors share that the conversations they have with patients are highly personal. A common thread in a person’s decision is individual risk tolerance.

“The risk of breast cancer can be a tremendous source of anxiety and uncertainty for women, particularly if they have family members who have been treated for the disease,” says Jennifer Tseng, MD, FACS, the medical director of breast surgery at City of Hope Orange County.

Even if they don’t have a gene mutation such as BRCA1 or BRCA2, O’Hea says someone may opt for a risk-reducing mastectomy if:

• there’s a strong family history of breast or ovarian cancer among first-degree relatives on either side
• they previously received radiation therapy before age 30
• they have lobular carcinoma in situ (abnormal cells in their milk glands)

The CDC also lists the above as risk factors for breast cancer.

These are not factors that you can control — you can’t exercise or meditate your genetics away.

“For some women, their level of risk tolerance leads them to consider prophylactic surgery in order to feel they have done everything possible to lower their chances of getting breast cancer,” Tseng says.

Reasons to avoid a risk-reducing mastectomy

Tseng says risk-reducing mastectomies are generally recommended only for people who have a higher chance of developing breast cancer. However, the odds of developing breast cancer can make anyone nervous, regardless of their risk factors.

Like any surgery, mastectomies carry some risks, including pain and discomfort for days to weeks afterward. There are also other, less tangible challenges people may face after surgery.

“Beyond the ordinary surgical risks, there can be emotional and lifestyle impacts after preventative mastectomy — how the patient feels about her appearance or intimacy, for example,” Tseng says.

According to a 2024 review, risk-reducing mastectomy often has a major impact on body image that affects sexual functioning and quality of life.

This may be enough to lead some people to decide against a preventive mastectomy. And some may prefer other options, such as more frequent mammograms and MRIs, which Bodden personally decided against.

Finally, someone may opt for a mastectomy in their cancer-free breast if they’ve already received a diagnosis of breast cancer on the opposite side. Data from 2018 indicates that this may lower the risk of developing breast cancer in the breast that does not yet have it.

However, the impact on survival is unclear because the cancer could still return to the breast in which it was diagnosed.

What about preventive mastectomy for men?

According to the CDC, 1 in 100 breast cancer diagnoses in the United States occur in men.

Research from 2015 indicates that the number of double mastectomies in men increased from 3% in 2004 to 5.6% in 2011. The authors say there is little evidence to support the idea that mastectomies decrease the risk of breast cancer development in men.

Further, O’Hea points out that research suggests that men are at a lower risk of developing breast cancer, even if they have a BRCA mutation.

For instance, the results of a 2020 study suggest that men with BRCA2 gene mutations had a 5–10% risk of developing cancer.

“Most won’t push that button,” O’Hea says.

How to decide whether a risk-reducing mastectomy is right for you

“The last thing you want to have is regrets,” says O’Hea.

He recommends that the discussion about whether to undergo a risk-reducing mastectomy span multiple doctor’s visits. He also recommends seeing a breast reconstruction specialist. While it’s not required, it’s good to know that you have options for reconstructing your breasts if you want to.

Doctors can provide guidance, but Tseng recommends looking within throughout the decision-making process.

“When considering a preventative mastectomy, the two things you as a patient need to understand deeply are yourself and your risk factors,” she says.

To make an informed decision, Tseng suggests asking your doctor:

• Would surgery best achieve your cancer risk-reduction goals?
• Do you have an inherited genetic mutation that increases your breast cancer risk?
• Are there nonsurgical options you should try first, such as lifestyle changes or medications?

“A physician with specialized expertise in breast cancer prevention and treatment can help you answer these questions and make fully informed decisions that are right for you,” Tseng says.

Bodden agrees, saying that gathering information helped her feel confident in her decision to proceed with the surgery.

“Get all the information specific to you and your situation that you can. Knowledge is indeed power,” Bodden says. “Seek out support groups. Make sure that you have confidence in your doctors, surgeons, and the hospital system that you choose.”

In the end, Bodden has no regrets.

“It’s like a dark cloud has been lifted,” she says.

Takeaway

Risk-reducing mastectomies, sometimes called preventive mastectomies, can significantly lower the chances of developing breast cancer.

Data suggests that this surgery reduces breast cancer risk by 90% for people in high risk categories, such as those who have a family history of breast cancer or have a BRCA1 or BRCA2 gene mutation. However, doctors don’t recommend this surgery for people with an average or slightly elevated risk of developing breast cancer.

Ultimately, it’s a personal decision that’s up to you. Speaking with a care team you trust can help you gather the information to make the best choice for your health and risk tolerance.