By Marie McCullough
The Philadelphia Inquirer
When Laura Tuzio Ross told her plastic surgeon that she preferred not to reconstruct her breast after cancer surgery, he warned her she would regret it.
“He said, ‘You’re only 41. You have the rest of your life ahead. Women wake up, and they’re devastated,’ ” recalled Ross, now 47, of Northeast Philadelphia. “He said, ‘You’re tiny, and we could do a one-step reconstruction on the same day as the mastectomy.'”
She relented, but after two years with what felt like “a cereal bowl under my skin,” she had her silicone breast implant removed. Now, she calls herself a “uniboober” and is so unselfconscious about being lopsided that she doesn’t wear a prosthetic breast form.
For decades, concerns have been raised about women who couldn’t get breast reconstruction, which has been shown to have psychological and physical benefits.
But in recent years, women such as Ross have brought attention to a less well-known problem: Many who don’t want reconstruction are pushed or rushed into it, often without fully understanding the downsides of using an implant or their own tissue to fashion a breast replacement.
A recent study of 123 women found that before mastectomy, two-thirds of them were inclined to forgo reconstruction, yet less than a third of them wound up doing so. While almost all recalled talking about reconstruction with their surgeons, the discussions were focused on the advantages.
Only 43 percent knew about the types of reconstruction, the number of operations involved, recovery times, and the major complications that one in three women experience.
“It could be surgeons aren’t explaining the risks, or patients are not understanding it,” said Clara N. Lee, a plastic surgeon at Ohio State University’s Wexner Medical Center, who led the study, which was published in August in JAMA Surgery.
Those risks now include a very rare immune-system cancer caused by breast implants, called implant-associated anaplastic large-cell lymphoma. Although the U.S. Food and Drug Administration and plastic surgeons’ groups issued warnings about it early this year, experts say awareness remains low.
Breast cancer activists are working to fill the knowledge gap and destigmatize what they call “going flat.” Using social media, seminars, and vivid photos and videos of women baring scarred chests, they are declaring that living without breasts is neither unfeminine nor misguided. It’s a personal choice.
Rebecca Pine, 41, of Freeport, Long Island, who decided to go flat after her second mastectomy in 2013, launched an online project called the “Breast and the Sea: Transforming Our Scars” with Bucks County photographer Miana Jun. Last weekend, Pine was to lead a workshop on reconstructive decisions, body image, and self-acceptance at the annual meeting of Living Beyond Breast Cancer, the Bala Cynwyd-based advocacy organization.
“The whole system has assumptions that you are going to reconstruct. And there’s a lot of pressure to conform to the conventional standard of beauty,” Pine said. “For me, it’s been a process _ not just overnight acceptance. I loved my breasts. But life changed, and this is who I am now.”
<strong>AN INCOMPLETE STORY</strong>
Obstacles to reconstruction are well-documented. Women who are low income, less educated, minorities, or live far from hospitals are less likely to have restorative surgery. To improve access, health activists fought for the federal Women’s Health and Cancer Rights Act of 1998, which requires group health plans to cover reconstructive procedures. (Medicare also covers reconstruction; state Medicaid plans vary.)
Reconstruction use increased from 46 percent of mastectomy patients the year the law passed to 63 percent in 2007, according to an analysis of a national employer-based insurance database.
Lost in such data, however, are the women who just didn’t want artificial breasts.
“The rates of reconstruction don’t tell the whole story,” said Lee, the plastic surgeon. “The real question is, what’s happening at the level of women and surgeons making the decisions?”
Although doctors cite research showing that reconstruction enhances women’s well-being, many of the studies don’t include the obvious comparison group: those who went flat. A 2009 review of 28 studies that included both groups found they reported equal satisfaction with their quality of life, body image, and sexual functioning.
Age is a factor in the choice to rebuild; women near the end of their lives are far more likely to opt to go flat. But anecdotally, a growing number of younger women are making that choice, often with guidance and support they find online.
Four years ago, for example, the online group Flat and Fabulous was created “to empower women to embrace life without reconstruction after mastectomy.”
Co-founder Sara Bartosiewicz-Hamilton, a technical writer in Kalamazoo, Mich., hoped to share her hard-won insights. She had a double preventive mastectomy with implants after she tested positive at age 29 for a BRCA2 gene mutation, which put her at high risk of breast cancer. Six years later, she developed autoimmune problems and had the implants removed.
“When we first started Flat and Fabulous, we thought we’d get a dozen people,” said Bartosiewicz-Hamilton, now 40. “It was bigger than we expected right away. Now we have 3,600 members.”
She added, “I am not a proponent that every woman should be flat. I’m a proponent of women having a choice.”
<strong>REMEMBERING WHAT MATTERS</strong>
Ross, of Northeast Philly, was opposed to reconstruction because she had three children, including a toddler, and was eager to resume her busy life. She also worried about possible damage to the arm muscles she uses to sculpt collectible, lifelike baby dolls.
“I’m still mad at myself that I didn’t stick to my guns,” she said. “There’s a crater in my chest now. If I hadn’t had the implant, it would be a smooth scar across the chest. And after the implant was removed, I needed eight weeks of physical therapy.”
Like many women, Ross felt pressured: “The doctor is calling you, and the [mastectomy] is scheduled, and you have to make decisions.”
Ruth B. Jackson, 66, of Arlington, Texas, felt that same whirlwind when her second breast cancer diagnosis in 2010 led to the discovery that she has a BRCA2 mutation. With the first diagnosis, she endured a lumpectomy, radiation, and chemotherapy. The second time around, she faced a double mastectomy and reconstruction.
She decided to put off the reconstruction decision indefinitely, an option many doctors don’t emphasize.
“It was just too much information. It was overwhelming,” she recalled. “I was told at any time I could come back and have the reconstruction. So I said, ‘I just want to get through the bilateral mastectomy and recovery and try to find some normalcy.’ ”
Now, seven years later, she still occasionally mulls more surgery, especially when she dresses up and laments the limitations of prosthetic bra inserts.
“I take a look at whether I feel whole at this point,” she said. “What makes it easier for me is, I’m not in a dating situation. I have a wonderful husband. But even if I were dating, I would have to find a man who would appreciate what matters, that I’m alive.”