February 3, 2021
When journalist Catherine Guthrie learned that she would need to have a mastectomy following a breast cancer diagnosis, she was shocked by what seemed like a cursory explanation from her surgeon about what would happen next, reports U.S. News & World Report.
That included removing both of her breasts, adding implants, and moving a muscle from her back to her chest to make the results look more natural. It didn’t feel right to her. She went home, thought about it and decided to “go flat.”
“I feel great about it. I love my body. I love the freedom I have in my body. I love that I have full mobility and strength in my body. I’m as flexible and strong now 10, 11 years later as I was then,” said Guthrie, who already had back issues and had been concerned about how the surgery would impact that. “I absolutely have zero regrets.”
The study, from University of California, Los Angeles (UCLA) Jonsson Comprehensive Cancer Center, also found that 22% of women who responded to the survey had experienced what they refer to as “flat denial,” which is where the surgeon either did not initially offer this choice, didn’t support the patient’s decision, or intentionally left extra skin in case the patient changed her mind.
Women were more likely to be satisfied with their results if they felt they had surgeon support for their decision, the survey found.
“There may be many reasons why a woman decides not to have reconstruction,” said senior study author Dr. Deanna Attai, an associate clinical professor of surgery at UCLA’s David Geffen School of Medicine.
“I think we have to do a better job of going into these discussions with an open mind, letting patients know that you have the option to not undergo reconstruction and we’ll do our best to close everything as neatly and flatly as possible,” she told US News,
Attai said she initially became interested in doing the survey because earlier research that suggested women who opted to not have reconstruction had a poorer quality of life didn’t match up with what she was seeing in patient communities.
“There just seemed to be a disconnect between what I was reading in the surgical literature and what I was seeing online, because these patients seemed to be very happy with their decision,” Attai said. “They were in the online space and organizing support groups and advocacy organizations to help educate others about the option to go flat and to provide information and support to each other.”
For the study, Attai’s team included patient advocates. They were concerned that an existing commonly administered survey showed bias toward reconstruction, so they developed an entirely new survey.
“We worked closely with the patient advocates to make sure that we were asking the questions in a way that made sense to them. We wanted to make sure that we got to some of the real issues, not only with satisfaction, but quality of life and comfort with their decision and satisfaction with their decision,” Attai said.
“This is a concept coming from patients. This is what the patients are experiencing. It’s not made its way into the validated survey tool. So for all of those reasons, we decided to do our own survey and we got what we got,” Attai said.
Among the limitations of the study is that this survey was distributed to the going-flat community. This may not represent all women, Attai said.
“It’s obviously very individual, but I was a little bit surprised to find that so many women were happy with their decision,” Attai said.
Not offering all the options puts the onus on a woman to come up with her own surgical treatment plan while she’s dealing with a traumatic diagnosis, Guthrie said. “Women can’t make an informed choice if they’re not given all of the choices,” Guthrie said.
It’s important for patients to feel connected to their providers, said Susan Brown, senior director of health information and publications for Susan G. Komen. If someone feels like she wants to consider going flat and is not getting support from her surgeons, it may be time for a second opinion, Brown said.
“One of the first things that stood out [about the study] was how important information is to patients before they try to make a decision or before they’re faced with a decision,” Brown said. “The second is how important physician support is for acknowledging, understanding and really respecting a patient’s wishes so that the provider or the patient can partner in making decisions because it looks like when that happens, then patients are more satisfied with the decision that they’ve ultimately made.”
Mastectomies have been increasing in recent years for a variety of reasons, Brown said. Not having reconstruction isn’t new, but it isn’t always something that’s been discussed as openly, she said.
Research contact: @usnews