Are Double Mastectomy Rates Driven by 'Pink-Ribbon Culture Fearmongering'?

You may have read the other day about the big Stanford study on double mastectomies. Researchers looked at outcomes for every women in California diagnosed with early-stage breast cancer from 1998 to 2011 -- -- all 189,734 of them -- and found, surprisingly, that removing both breasts doesn't increase breast cancer survival rate.

From NPR:

Women who had breast-conserving surgery had an 83.2 percent survival rate at 10 years, compared with 81.2 percent for those who had a double mastectomy.

“What it means is that women should be aware that if they choose double mastectomy, the chances are that it won’t cause them to live any longer than if they had chosen something else,” said Stanford professor Allison Kurian, lead author of the study.

Perhaps even more surprising than the lack of evidence to recommend double mastectomies is the discovery that, from 1998 to 2011, the procedure had risen among the large population studied from 2 percent to 12 percent. And for women under 40, the rate increased from 3.6 percent to a whopping 33 percent, "even though most of them had stage zero or stage one cancer, a very early, very treatable form," NPR reports.

On KQED radio's Forum today, host Michael Krasny discussed the research with two of the study's authors, a breast surgeon, and a leading advocate for women living with breast cancer. One of the obvious questions that arose:

Why are so many women opting for this more aggressive treatment?

"It’s been perplexing for people to try to understand why that is," said Stanford professor Allison Kurian, the study's lead author, who said no data had emerged over the time period studied to suggest a survival benefit from double mastectomies.

"Many different explanations have been suggested, some of it relating to new sensitive diagnostic tests that might find more cancers or other findings that might prompt surgery," she said. "And others potentially related to some new techniques of breast reconstruction that might encourage bilateral surgery for purposes of symmetry."

Scarlett Lin Gomez, senior author of the study and a research scientist at the Cancer Prevention Institute of California, said breast cancer patients could very well be making the decision out of fear instead of medical evidence.

"Our findings really beg the question of the psychology and the thought process that's going behind the decision for these various types of treatment," she said. "We have anecdotally heard, and a study was just presented this week at a breast cancer conference, that ... fear and anxiety does seem to play a large role in that decision for bilateral mastectomy."

Dr. Michael Alvarado, director of UCSF's Breast Surgery Oncology Fellowship, said that "women are initially afraid. This is a huge thing they're dealing with, and they've obviously heard of other women's states of disease, and they have this ... fear and worry and all of the complex emotions going on in the initial consultation. It typically takes some time for them to come off of that craziness to really think about what the options are and what those risks involve. And delving into bilateral mastectomy offers a significant number of risks and complications with the surgery and with reconstruction itself."

Alvarado said he thought many patients were unnecessarily hurried into surgery.

"It’s a pretty complex time for these women, and I think a lot of them get rushed into doing surgery immediately, and 'it needs to be done within a week or 10 days,' which is absolutely not true. And they’re making these decisions based on emotions, as opposed to a lot of these facts that have been recognized in these studies."

Still, Alvarado also said the desire to preclude the possibility of going through another traumatic experience is strong.

"The issue of just having to go through the experience again, that just generates this anxiety. To have to go through it once is horrible enough, to have go through it again ... some women feel that even if that's a 2-5 percent chance, they don't ever want to do it again. It's really hard to overcome that psychological thought process."

'Pink-Ribbon Culture'

Karuna Jaggar is the executive director of San Francisco-based Breast Cancer Action, an education and advocacy organization for women living with and at risk for breast cancer. While making it clear that she in no way wanted to suggest that women were making the "wrong choice" for double mastectomies, she said the study's findings are indicative of overkill by the breast cancer awareness movement.

"I think this study is part of a much larger picture. Breast cancer occupies a huge space in our culture, and the pink ribbon is arguably the most successful marketing tool of the 20^th century," Jaggar said in reference to the ribbon that has become an international symbol of breast cancer awareness.

"Our job is to look at how women's choices are informed, how they're supported, how they’re influenced, how they're constrained. I would argue that pink-ribbon culture and marketing plays a very important role in this discussion, because the dominant mainstream breast cancer movement is really focused on awareness, and the movement is driven, arguably, by fearmongering, by really fueling this fear of the disease.

Forum host Michael Krasny asked if anyone was profiting from the emphasis on awareness.

"We have some hard questions to ask," said Jaggar. "For the billions of dollars spent each year, what do we have to show for it? What we see is year after year about 40,000 women continue to die of breast cancer. ... We’re not seeing the promised results of the investment in breast cancer, and a lot of this money is going to things like awareness. Do we need more awareness at this stage? You’d be hard-pressed to find anyone over the age of 10 who isn't aware of breast cancer, and screening. Evidence has been increasingly clear that early detection does not in fact save lives …"

Jaggar said the fear of breast cancer is so strong that the average American woman "vastly overestimates her risk of breast cancer.  We live in this 'more is better' culture," she said. "More screening, more information, more action, 'do something.' And so many women have been told, 'Get your mammogram.' The thinking is they’ll do anything for the peace of mind, and they’ll remove a healthy breast."

Yet Jaggar also insisted that she was not questioning any individual woman's choice. Indeed, callers to Forum included women who had been diagnosed with breast cancer and opted for a double mastectomy. The women spoke of how complex the decision was and now, some years on, they expressed no regrets.

Ongoing Issue

As with many research findings, the devil is in the details, and even Dr. Gomez, the senior study author, cautioned that the research is not based on a clinical trial in which researchers were able to randomize the subjects. The findings, she said, should be "one piece of evidence that people should factor in when having discussions with physicians."

LIkewise, as the Fred Hutchinson news service points out, the huge jump in women under 40 choosing double mastectomies may have been accounted for by women with a predisposition for the disease having the procedure. "One limitation of the new study is that it didn’t include data about women with strong family histories or genetic risks of breast cancer, such as BRCA1 or BRCA2 mutations," the new service reports.

Still, this is an issue that is bound to gain increasing attention as new research comes in and those in the public eye discuss their treatment choices. When "Good Morning America" correspondent Amy Robach, for instance, wrote about undergoing a double mastectomy after receiving results from an on-air mammogram, one cancer doctor wrote a criticism of her reasoning for New York Magazine.

She told People magazine that she went this route because she wants to be around for graduations and grandchildren. But women at average risk of breast cancer (i.e., who lack the genetic defect that Angelina Jolie carries) increase the likelihood that they are alive in 20 years by less than one half of one percent through the surgery Robach chose. No expert or guideline advocates Robach’s choice as the standard for care; many warn it is inappropriate.

For more on the controversies that have popped up over breast cancer screening and treatment, see Lisa Aliferis' post on author Peggy Orenstein's critique of the "feel-good war on breast cancer."