By LAURA NEWMAN 

I remember the first time that I heard about an unexpected rise in unnecessary mastectomies in young white women, who were privately insured. About five years ago, I was at the largest cancer meeting of the year, the annual meeting of the American Society of Clinical Oncology. Speakers raised the issue; they’d speculate why; and within minutes, the speaker and the entire audience looked crestfallen and helpless.

For many, it was a devastating turnaround. The women’s health movement and progressive forces in medicine had vigorously fought for breast-conserving surgery because the best science long ago proved that total mastectomies were overkill. Not only has breast-conserving surgery been tested rigorously against total mastectomies, but the results have consistently shown, that for women with early breast cancer, there is no survival advantage to having more aggressive surgery. Compelling proof that breast-conserving surgery AKA lumpectomy and radiation should be the standard of care for early breast cancers goes back until about 1990. Simply put, for women with early breast cancers, if both breasts are removed, they will not reduce their chance of getting cancer again, nor will they improve their survival any more than if they had had a minimally invasive lumpectomy followed by radiation. Additionally, unnecessary hysterectomies were also questioned and they are far less common today.

In the larger picture, organ preservation is a big part of medicine today, and often, for very good reasons. For example, for many early-stage kidney cancers, taking the entire kidney out is now considered excessive and harmful because it elevates a patients’ risk for chronic kidney disease and cardiovascular disease. Clinical practice guidelines call for reviewing each kidney cancer case with an eye towards which people have organ-confined cancers, can safely have a limited part of their kidney removed, and avoid chronic devastating conditions.

I’ve seen friends, daughters of friends, siblings of friends, and moms die from breast cancer. But I’ve also seen far more women in recent years who have had lumpectomy and radiation, get regular monitoring, who do quite well. Also breast cancer treatment has changed dramatically so that outcomes from decades ago may not be comparable to today. I don’t blame any woman for thinking that a mastectomy is what she wants after she hears a breast cancer diagnosis. Intuitively, a woman might think, the more removed, the better. However, it is not straightforward. I am also sure that I would become terrified.

Susan Love, MD, Chief Visionary Officer, Dr. Susan Love Research Foundation, Santa Monica, CA, describes how fraught with fear deciding what to do is. “This is the one of the only decisions that women with breast cancer will get to make. Women who hear ‘cancer’ think it is a potentially fatal disease. You just don’t think rationally.” Love also can understand why many women think that “the more aggressive the surgery, the better.”

High-risk women could benefit from more aggressive surgery, but they are not your average woman. For women who have mutations in the BRCA genes or a strong family history of first-degree relatives with breast, all of which can be sorted out with cancer prediction models, this story does not apply. Angelina Jolie was one example of a woman who had an 80% of developing breast cancer. For women with these risks, a preventive mastectomy and removal of ovaries will make sense. Exactly what constitutes high risk will be addressed in a subsequent post.

Eleanor Walker, MD, Director of Radiation Oncology at Henry Ford Health System in Detroit, MI, stresses that taking time with patients is critical. “Young women can expect a healthy lifetime of at least 50 years. Lack of knowledge has to be addressed. There are family issues to address.”

Walker described an “options clinic” at Henry Ford for women who are newly diagnosed. “We need a lot of education for patients to understand that whatever they do, there are no guarantees.” Although reports have been out that address getting a second breast cancer in the unaffected breast, Walker points out: “In 10 to 20 years, if there is a recurrence, it is most likely to be in the same breast. Only the highest risk women are likely to develop breast cancer in the opposite breast.”

The Latest Research and Public Policies

What cancer doctors could only hint at a few years ago came into stark view with the publication Sept. 3 of a large study of double mastectomies in California women between 1998 and 2011. Using data from California’s Cancer Registry, which collects data on all the patients diagnosed with cancers in California since 1998, investigators provided a wake-up call on the jump in double mastectomies:

• Of nearly 200,000 women diagnosed with breast cancer since 1998, in each year, between 1998 and 2011, double mastectomies rose by about 14%.
• Women who had a double mastectomy had no better survival rate than those who had the more conservative lumpectomy.
• The proportion of double mastectomies in women among women with a diagnosis of breast cancer soared from 2% in all patients with a breast cancer diagnosis in 1998 to 12.3% in 2011.
• For women under age 40, just 3.6% had both breasts removed in 1998, but this jumped to 33% in 2011.
• Women who had a single mastectomy (just one breast removed) had slightly worse survival than women who had lumpectomies or double mastectomies.
• Double mastectomies were more common in National Cancer Institute-designated facilities.
Far less clear are who chooses total breast reconstruction, either at the same time as the mastectomy, or delayed, and who do not. “Women need to know that the Women’s Health and Cancer Rights Act passed in 1998, provides protections for women who want total breast reconstruction,” said Otis Brawley, MD, Chief Medical and Scientific Officer of the American Cancer Society.

Women’s Health and Cancer Rights Act of 1998

That includes not only total breast reconstruction on the affected breast, but surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses and physical complications at all stages of mastectomy, including lymphedemas. However, for certain demographics, practitioners and linkage systems are not in place.

Brawley pointed out that 80% of plastic surgeons do not take Medicaid or the uninsured. In fact, perhaps in large part because of this, at some hospitals serving poor, minority women, total breast reconstruction is not even discussed.

However, young, insured, white women are more likely to get their cancer care at an NCI-designated facility and they will find it much easier to get total reconstructive surgery, according to Love . “It’s far easier to coordinate care if the general surgeon is linked to a plastic surgery team so that if a woman wanted breast reconstruction, they can work together,” she said.

In one sense, there may be a silver lining in terms of how black women fare in some aspects of breast cancer care. Otis Brawley, commented:
“When something is a new fad [for example, getting unnecessary double mastectomies], the poor and disenfranchised always end up being better off. It was like that when women were going for bone marrow transplants.”

Bone marrow transplants subsequently proved useless.

On Sept. 4, a team of University of Chicago researchers presented a paper at the American Society of Clinical Oncology’s Breast Cancer Symposium 2014 in San Francisco that provided more insight. They surveyed women who had chosen a double mastectomy before surgery, finding that those women were far more worried about recurrence, had higher anxiety levels, and less knowledge than those not considering it. Many stated that the diagnosis “sent them into a daze.”

I am Not My Breast

Besides fear, anxiety, or poor information contributing to health decisions, I can see why movements are afoot with the MO “I am NOT my breast.” I too don’t want to be objectified. As more news surfaces on an epidemic in rapes, anger about rape justice escalates. In a hostile sexist climate, it makes sense that some women might say the heck with my breasts. They might be more trustful of their instincts and their allies than outside authorities. For example, in Atlanta, African-American women have joined forces to create a group called Bold and Breastless.

Coming Full Circle

In an ironic twist, the trend towards breast-conserving surgery goes back to some of the nation’s first women’s health advocates, including Our Bodies, Ourselves, as well as many other grassroots women’s health groups around the country, and advocates, especially Rose Kushner. In 1975, Kushner wrote the landmark book and bestseller Why Me: What Every Woman Should Know About Breast Cancer to Save Her Life. (It was originally titled Breast Cancer: A Personal History and Investigative Report.) Kushner was one of the strongest voices against disfiguring mastectomies.

Taken together, since the 1970s, women’s health advocates have argued against violating women unnecessarily, questioning not only unnecessary mastectomies, but hysterectomies, the safety of the first birth control pills, and much more. Self-education and getting the best information to women have been part and parcel of the women’s health movement for decades. Inside the medical profession, progressive individuals continue to question unnecessarily harming women and pressing for science to guide practice.

I don’t know whether and when the trend towards unnecessary preventive mastectomies among young white women with insurance will change. Maybe each generation has to see for themselves what makes sense.
I will say this: like it or not, insurers have demonstrated increasing concern with eliminating excess procedures that offer limited or no proven health benefit. Double mastectomies are costly and studies have consistently favored breast-conserving surgeries for early noninvasive breast cancers. If insurers go after it, public debate will pit a rising group of outspoken women up against the medical establishment and insurers. Sorting this out will not be easy.