In a recent video making the rounds on social media, two women proudly show off their scarred, flat chests. Debbie Bowers and Marianne DeQuette Couzzo take off their t-shirts as they talk about what it means to live without breasts. Both women survived breast cancer. And both decided not to undergo breast reconstruction, a surgical process where the shape of the removed breast is rebuilt. These two friends are “going flat,” a brave move in a world where women are often seen as the sum of their breasts and bodies.
When a woman undergoes a mastectomy, she usually has two options: she can have immediate reconstruction, where both the mastectomy and the breast reconstruction are performed in a single surgery, or she can have a skin-sparing mastectomy, where the surgeon leaves some breast skin, so that she can wait before deciding whether or not to have reconstruction.
Women’s health advocates fought hard to improve access to reconstructive surgery for all women. In 1998, Congress passed the Women’s Health and Cancer Rights Act, which requires health insurance plans that offer breast cancer coverage to also provide breast reconstruction and prostheses. It was an important victory for women’s choice.
Since then, breast reconstruction is more widely offered and undergone. According to a 2014 study, 56 percent of women choose to undergo reconstruction surgery after mastectomy. And as this New York Times article notes, “…medical professionals have embraced the idea that breast restoration is an integral part of cancer treatment.”
The American Society of Plastic Surgeons created the first national “BRA Day” (BRA stands for Breast Reconstruction Awareness) in 2012. Their stated goal is to educate breast cancer patients on their surgical options. They also fought for passage of the Breast Cancer Patient Education Act, which requires the Secretary of Health and Human Services to plan and implement an education campaign to inform breast cancer patients about the availability and coverage of breast reconstruction and other available alternatives post-mastectomy.
This is all good news, yet some women feel that the efforts to increase knowledge of and access to reconstruction can sometimes erase the experiences of women who chose to forego reconstructive surgery, and that doctors too often fail to educate women about the full range of options. The experience of Ms. Cuozzo, one of the women in the video mentioned above, is not uncommon: “I was never told there was a choice. I went from the breast surgeon to the plastic surgeon, and they said, ‘This is what you’re going to do.’”
Many women’s health activists are concerned that women also aren’t being truly informed about the health risks of reconstruction. A small U.S. study found that while most women reported talking about breast reconstruction with their doctors, only 28 percent remembered talking about the risks of the surgery.
There are several different types of reconstructive surgery. Breasts can be rebuilt using implants — either saline or silicone — or they can be rebuilt using autologous tissue, which means tissue from different parts of the body. Sometimes both techniques are used together. The New York Times reports that up to one-third of women experience complications from reconstruction. These complications include infections, accumulation of clear fluid causing a mass or lump (seroma) within the reconstructed breast, pooling of blood (hematoma) within the reconstructed breast, and blood clots. Women whose breasts are rebuilt using implants face additional risks, including extrusion of the implant (when the implant breaks through the skin) and implant ruptures.
As for women’s satisfaction after mastectomy, the Times article notes that “a systematic review of 28 studies found that women who went without reconstruction fared no worse, and sometimes did better, in terms of body image, quality of life and sexual outcomes.”
Women who choose not to undergo reconstruction do so for a variety of reasons. Recovery from a mastectomy is quicker and less likely to have complications compared to recovering from both a mastectomy and reconstruction. Some women who don’t have reconstruction at the time of their mastectomy simply don’t want to go through another surgery — like Rebecca Pine, a Long Island woman, who survived cancer and co-founded a photography and writing project called “The Breast and the Sea,” who says, “It’s a tremendous amount to put your body through, and it’s not like we’re going to get our breasts back.” Sometimes women are unable to have reconstruction because of medical issues. Some women don’t want to rebuild their breasts, without nipples, and without sensation.
For many women the problem isn’t about how wonderful breast reconstruction will be or how difficult the process can be. It’s fighting the idea that not having breasts makes a woman less of a woman or “abnormal.” Dr. Nicola Dean, spokesperson for the Australian Society of Plastic Surgeons, told The Huffington Post Australia last week that breast reconstruction is really about “the right to return to being a normal woman” (as if a woman without breasts isn’t normal!).
The New York Times article includes a story told by Geri Barish, president of the Long Island advocacy group 1 in 9. When Barish decided to skip reconstruction, she was scolded by a doctor who said, “‘How can you walk around like that? You look deformed.”
These are the types of messages that women faced with a mastectomy are fighting. It’s not that women who decide to “go flat” are inherently anti-reconstruction. They are challenging the idea that having breasts is a requirement, rather than a choice. They are also challenging the idea of who owns the decision making about their bodies: the women themselves or the surgeons. At the end of the day, it’s the woman herself who faces the risk of complications and a longer recovery period. Whatever a woman’s reasons for choosing to have or not have breast reconstruction surgery, all want to be seen as women, regardless of whether they have breasts. As Debbie Bowers and Marianne DeQuette Couzzo share in the video, they are happy to be alive and now “wear their flat chests proudly.”
PLUS: Check out Paulette Leaphart’s powerful story about her 1,000 mile topless walk:
Filmmaker Emily MacKenzie is working on a forthcoming film, Scar Story, about Leaphart’s walk. To find out more, visit the film’s Kickstarter campaign page.