When Susan Rafte first felt a pea-sized lump in her right breast, in 1994, she was about to become a new mother. Her doctor advised her to ignore the lump as she breastfed her daughter, and it grew into a mass about the size of a nickel. By the time she was diagnosed, she had stage III breast cancer.

Her doctor told her she would need a double mastectomy as soon as her milk production stopped. She started chemotherapy at nearby MD Anderson Cancer Center to shrink the tumor, and then her oncologists gave Rafte a new surgical option: a lumpectomy without removing her left breast, despite the presence of some small calcium deposits that can be early signs of cancer. However, the plastic surgeon she talked to told her that reconstruction after surgery would be most successful if she had a double mastectomy, Rafte says.

Women diagnosed with breast cancer choose whether to have surgery on one or both breasts. A PCORI-funded study is finding out how women feel about their decision. (Getty)

She had a difficult choice that many women face: whether to remove a breast that shows little or no signs of cancer. Of course, there’s the medical aspect of the decision—to remove and kill the cancer— but there are also quality of life issues, including physical appearance after reconstruction and recovery. Both matter, but psychosocial questions are not studied nearly as widely after women choose a double mastectomy or in women who instead choose a single mastectomy.

Rafte is a partner on a PCORI-funded research team studying just those questions. In preliminary results, the team has found that, compared with women who chose to have surgery on only one breast, those who removed both were more distressed about cancer and had more body image concerns both before and after surgery.

About the Study

Where was the study taking place?
A university hospital and a community practice, both in Houston

Who were the participants?
252 women who have newly diagnosed stage I, II, or III invasive breast cancer in one breast but are not breast cancer gene (BRCA) mutation carriers

What approaches were being compared?
- Removal of both breasts
- Surgery on only the affected breast

What outcomes were being assessed?
- Body image concerns
- Cancer worry
- Satisfaction with treatment decisions

How far along is the study?
Completed, with results under PCORI review and being published in peer-reviewed journals

How is the team disseminating its findings?
- Sharing results with cancer advocacy groups
- Engaging patients and healthcare providers to pilot test the study’s web-based decision-making tool
- Collaborating with surgeons and oncologists at other centers to make the tool useful beyond the original study site

Considering Double Mastectomy

In 2017, an estimated 250,000 American women will be diagnosed, as Rafte was, with invasive breast cancer, which has grown beyond the breast’s milk ducts. Such patients face many of the same choices Rafte did more than 20 years ago, including whether to remove the unaffected breast.

A growing number of women diagnosed with invasive breast cancer in one breast choose to remove both, in hopes of preventing cancer from arising in the second breast and of getting the best outcome from reconstructive surgery, says Abenaa Brewster, MD, a PCORI awardee and medical oncologist specializing in breast cancer at MD Anderson Cancer Center. Removal of the second breast is known as contralateral prophylactic mastectomy.

Research so far has shown little or no difference in life expectancy between women who have had surgery on only the affected breast and those who have had both breasts removed. Therefore, any small survival benefit should be weighed against the risks of surgery and the wide variety of psychosocial issues important to patients, such as quality of life and body image, Brewster says. These issues can affect intimate relationships and overall psychological well-being.

It’s a different story for women with a strong family history of breast cancer or for those who have mutations in BRCA genes, who have inherited an increased risk of breast cancer. For these women, removing the second breast decreases the risk of contralateral breast cancer by an estimated 94 percent, says Brewster.

More Requests for Double Mastectomies

When Brewster started practicing medicine in 2002, only patients who had BRCA mutations received double mastectomies. But a few years later, she noticed more patients choosing double mastectomy. She learned that colleagues at MD Anderson Cancer Center and Kelsey-Seybold Clinic’s Breast Diagnostic Center were seeing the same trend. Wondering why, she began doing research. In an initial study, she asked 110 women why they chose contralateral prophylactic mastectomy. She found the decision came down to three things: being unusually worried about cancer, having less than average knowledge about breast cancer, and being greatly concerned about physical appearance.

Patients have a very emotional reason for requesting a double mastectomy. They want peace of mind.

Abenaa Brewster, MD Principal investigator, PCORI-funded research study

“Patients have a very emotional reason for requesting a double mastectomy. They want peace of mind,” Brewster says. “It can help decrease their distress and worry.”

The natural next question for Brewster was: how do women feel after deciding to undergo double mastectomy?

In her PCORI-funded study, Brewster’s team has examined whether having a double mastectomy, rather than surgery on only one breast, affects the way women with invasive breast cancer think about the condition. The team has asked women how much they worry about their cancer, how distressed they feel about their appearance after surgery, and how satisfied they are with their decision about surgery.

The study includes women who are not BRCA mutation carriers, don’t have a strong family history of breast cancer, and have received cancer treatment at MD Anderson or Kelsey-Seybold. Of those women, 44 underwent double mastectomy and 208 had surgery only on the affected breast. The participants completed a questionnaire before surgery and at 1 month, 6 months, and 12 months after surgery.

A Novel Approach

The PCORI-funded project is pathbreaking in several ways. It’s the first to look at attitudes toward double mastectomy both before and after surgery. And unlike previous studies, it compares the views of women who did and did not choose a double mastectomy.

Brewster and her colleagues have used the information they obtained—combined with data on how double mastectomy affects life expectancy—to develop a tool that predicts future breast cancer risk and helps patients make decisions about surgery.

The team estimated using this tool that women who are 50 or older experience no increase in life expectancy if they choose a double mastectomy. However, the tool showed 40-year-old patients who have certain specific tumor characteristics and family history, and choose a double mastectomy, have an increase of one-half of a quality-adjusted year of life expectancy. But in preliminary results, the research team also found that women who chose double mastectomy tended to have higher distress about cancer both before and after surgery. And they also had higher body image concerns both before and after surgery.

Breast cancer advocates and survivors, including Rafte, participated in the project’s community advisory group. The group provided feedback on keeping participants engaged in the study, so they were willing to fill out the four questionnaires. For example, the group suggested that, instead of communicating with patients only at appointments, the research team should send thank you notes and a newsletter via email. The advisory group also provided feedback on the decision-making tool, helping to make it user-friendly.

We each have a different cancer experience.

Susan Rafte Patient partner, PCORI-funded research study

A Survivor’s View

Rafte’s double mastectomy was just the beginning of her breast cancer experience. About 14 months after surgery, the cancer spread to her spine and she went back on chemotherapy. She later received a stem cell transplant. Now, after more than 20 years, she still has checkups with a medical oncologist.

She also volunteers weekly at MD Anderson to support patients.

“We each have a different cancer experience: everything from healthy women carrying one of the BRCA mutations and who have chosen to have a prophylactic mastectomy to survivors of advanced cancer,” Rafte says. “We share our experiences and sometimes show what we now look like physically since our surgeries.”

Though she feels grateful and lucky to be a survivor of advanced breast cancer, Rafte actually regrets her choice of a double mastectomy. Her expectations for reconstruction were unrealistic. “We live in a society where what our breasts look like is so overstated. To think you could lose this piece of you is very difficult,” Rafte says.

By arming patients immediately after diagnosis with information not only on the physical aspects but also on how women later regard their physical appearance and their decision, the study may enable patients to make better-educated decisions about their treatment, Brewster says.

The findings may even change conversations about reconstructive surgery, she says.

“For the first time, we will provide a platform for breast surgeons to be able to better explain to patients what body image issues they may face after removal of both breasts, as it’s an irreversible procedure,” Brewster says. “These issues may include feeling less attractive and loss of sensuality of the chest wall.”

As for Rafte, 23 years after her diagnosis, she would like to see fewer women choosing double mastectomies. She believes this study is a great start to helping patients get the information they need to make informed decisions.

“I wish this study had come out before,” Rafte says. “I had a great surgeon, but if you have data that supports not having a double mastectomy, it will help inform the Susan Rafte out there who is trying to make her decision.”

At a Glance

Mental and Social Well-Being among Women with Cancer in One Breast Who Underwent Surgery to Remove Both Breasts

Principal Investigator: Abenaa Brewster, MD

Goal: To better understand the effects of choosing double mastectomy on women’s cancer distress and body image.

View Project Details | View Related Materials

By Melissa Schenkman, Writer and Editor

Posted: October 19, 2017


Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Health Topics
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

Subscribe to PCORI Emails


Hand pointing to email icon