Some Women With Breast Cancer Report Experiencing ‘Flat Denial’ From Surgeons Post-Mastectomy

Advocacy Groups | <b>FORCE</b>

Although many women with breast cancer report being satisfied with their decision to forgo reconstruction after a mastectomy, some indicate a lack of support from their surgeon as well as limited information on their options.

Mastectomy rates are rising both as a treatment option for breast cancer and a preventative option for women with genetic predispositions to cancer.

Although many women report being satisfied with their decision to “go flat” and forgo reconstructive surgery following a mastectomy, some women have indicated that they felt pressured to undergo breast reconstruction from their surgeon. Moreover, according to Dr. Deanna Attai, some felt educational materials on the options available to them were severely lacking.

Attai, an associate clinical professor of surgery at the David Geffen School of Medicine at the University of California, Los Angeles, recently presented on the topic of why many women now choose to forgo reconstructive surgery and highlighted patient perspectives about their experiences with “going flat” after a mastectomy during the 12th Annual Joining FORCES Against Hereditary Cancer Conference.

During her presentation, Attai highlighted two studies. The first was an analysis of patient’s decision making, their relationship with their breast surgeon, and their overall experiences with going flat. A survey was distributed through two social media groups consisting of women who had made the decision to forgo reconstruction after their mastectomy. Most of the patients who participated in the survey reported feeling that they were knowledgeable about their options following their surgery, being well informed on the risks, feeling supported by their doctors and an “overwhelming majority” noted that they believed they made the right decision.

Of note, while most patients felt their doctors showed empathy regarding their decision, there were still about 20% to 30% of patients who strongly or somewhat disagreed with that statement, Attai highlighted.

Additionally, 47.8% of patients indicated that they did not receive any materials (handouts, pamphlets or worksheets) that provided more information on going flat. However, 58.6% of patients reported seeking out images of what a final result would look like and most felt it was helpful in making their decision and later accepting their new body image.

The results of that study demonstrated that most patients made the decision on their own, that aids to help make decisions were lacking, and overall, women want going flat talked about as an active option.

The second study Attai highlighted was one she and her colleagues conducted. That study evaluated 931 patients on their reasons for going flat, their “flat denial” experiences, and satisfaction with their choice. The importance of the survey compared to others, she said, was that it included more inclusive questions. She mentioned that previous studies asked questions such as “do you feel pain in your breast area?” however, she noted, a patient who has decided against reconstruction may no longer that feel they have a breast area. Therefore, this could skew results that previously showed going flat resulted in a worse quality of life.

These survey results showed that the most common reasons for forgoing reconstruction were to avoid a foreign body, avoid health risks from an additional surgery and a shorter recovery. Moreover, a little over 50% of respondents felt their breasts were not that important to their body image.

Regarding surgical outcomes, most patients reported that they felt they were satisfied, pleased with the appearance of their chest, or felt confident about their body.

Most patients felt that their doctor performed the surgery that was agreed upon, offered the option to go flat, and that their doctor was supportive in their decision to forgo reconstruction. However, there were still quite a few patients who did not agree with these statements.

Overall, 22% of patients reported experiencing “flat denial” (not having a supportive surgeon, a surgeon leaving additional skin or not being offered the flat option at all) and 74% of patients reported being satisfied with the outcome. Patients were more likely to report being satisfied if their surgeon was accepting of their decision and if they received adequate information on their options, according to Attia.

She noted that patients in the study reported the following: “Extra skin was left in case I changed my mind, as if I didn’t know what I wanted,” “I was told going flat was a mistake,” and “I was never given the choice to go flat, like I was expected to have a reconstruction.”

Attia highlighted that those patients need more tools to help them learn more about the options of going flat. “It’s not enough anymore for the surgeon to say, ‘well it will look flat like a man’s chest without a nipple,’” she said. “That’s not what a woman wants to hear.”

Some of those tools that are currently being developed, she mentioned, include photo galleries that show what going flat may look like, as well as decision aids and communication tools to help patients make a more-informed decision.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.