Body image determines how we see ourselves and how we think we are seen and society tells women what it means to be attractive.
All this leads Anne Katz, a nurse and sexuality counselor at CancerCare Manitoba, to this conclusion: “Not having reconstruction after a mastectomy is an act of defiance. And I don’t mean that in a bad way.”
Who Makes That Choice, and Why?
After losing a breast to cancer, about 37 percent of women in the U.S. say “no” to reconstructive surgery, according to a study published in February 2014 in the Journal of Clinical Oncology. The numbers vary somewhat from region to region, but most women who make this choice are 50 or older.
Too many people I know had trouble with reconstructive surgery and I just didn’t want to mess with it.
— Kathy, breast cancer survivor
Accepting or rejecting reconstruction is one of the most personal decisions a woman can make. So who are these women who prefer to purchase a prosthesis (also known as a breast form) or face the world flat on one side — or both? Why did they make this decision? And how does it affect their lives as the years go by?
‘I Am Struck by How Well Women Know Themselves’
The most common reason why women reject reconstruction is because they do not want to endure more surgery.
“Many women, especially those over 50, do not want the hassle of the repeated surgeries and procedures that reconstruction requires,” said Dr. Julie Margenthaler, a breast surgeon and associate professor of surgery at Washington University’s School of Medicine in St. Louis, Mo.
About 30 percent of Margenthaler’s patients decline reconstruction. “They tell me, ‘Nobody will see this except my husband,’ or ‘I don’t wear bikinis anymore.’ But all the women I see — whether or not they choose reconstruction — are mostly happy with their decisions,” she said. “I am struck by how well women know themselves.”
By contrast, fewer than 15 percent of Dr. Deanna J. Attai’s patients opt out of reconstructive surgery. Attai is an assistant clinical professor of surgery at the David Geffen School of Medicine at the University of California Los Angeles and has a medical practice in Burbank.
Aware that the number in her practice is low, Attai noted that women in the Los Angeles area may be particularly “body conscious.”
She said, “This is a very interesting topic and I don’t think one well-studied. My patients who have not had reconstruction seem to accept the issues and limitations that come with trying to fit in without a breast.”
I’ve been living with just one breast for over five years, but have pondered this topic since my first bout of breast cancer 20 years ago. I thought about it nine years ago when I saw a frantic woman chase her runaway prosthesis through the waves off Gulf Shores, Ala. I thought about it after my mastectomy in 2009, when I gave away all my V-necked and scoop-necked shirts and blouses.
And I thought about it last month in the dressing room at my fitness center’s pool, where I was so uncomfortable changing in the wide-open, mirror-filled room that I got permission to use one of the private dressing rooms reserved for families.
“Embrace asymmetry,” counseled a wise friend. In most instances, I’ve done just that, grateful to have survived cancer twice.
Kathy, 65, had her first mastectomy at 39 and her second just a few months ago. “I got one of the first stick-on prostheses back in 1990, and I’m about to be fitted for two new ones,” she said from her home in northern California. “Too many people I know had trouble with reconstructive surgery and I just didn’t want to mess with it. My husband has been supportive all along.”
Her wardrobe is filled with sleeveless tops, backless tops and low-cut tops, all of which work well with her prostheses and no bra.
“But there is no way I’d go to a gym or a pool and get into a group shower situation. I wouldn’t want people staring, or to freak somebody out,” Kathy said. “When I’m dressed, nobody knows what I’m missing.”
A Scar That Made an Impression
Doctors hear stories about how women’s lives change when they are “missing” something.
“Some women in my practice who didn’t have reconstruction won’t take a shower in the open or go back to the gym or the pool. Some won’t even undress in front of their partners,” said Dr. Amy Shaw, medical director of Annadel Medical Group, a Cancer Survivorship and Primary Care Oncology practice in Santa Rosa, Calif. “But some are so comfortable with themselves — at the office, we call them the Amazons — they just get on with life, happy to answer the obvious question, even from a stranger at the gym, and maybe create a bond with the woman who asked.”
The first time Shaw saw a mastectomy scar, she was 22, backpacking with friends. “We stopped at a lake, took off our clothes and jumped in to swim,” she said. “One of the older women who joined us had a scar, and I was intrigued with her comfort level. That was the day I got interested in taking care of people with cancer.”
Dorothy, 81, chose not to have reconstruction after a mastectomy in 2007.
“I didn’t want a foreign object in my body,” she said. “Besides, after the surgery, I just wanted to get on with my life. It turned out not to be much of an adjustment at all.” Dorothy, a widow, lives in St. Louis. She did give up swimming because she found mastectomy bathing suit tops too restrictive and uncomfortable.
Giving Up a Higher Risk of Death
Jane, 68, figures what she gave up when she had both breasts removed in 2012 was the likelihood of dying of cancer.
“Only one breast had cancer in it, but of my mother’s and father’s 17 siblings, 14 of them died of cancer, so I opted for a double mastectomy,” she said. “Then I said ‘no’ to reconstruction because I did not want anything artificial in my body and I did not want to keep going under the knife.”
Jane, who lives in Los Angeles, said she stood up to pressure from her oncologist and from a male family member who insisted she would “feel more womanly” with reconstruction. “I just told everybody that it was my decision, and that was that,” she said. “My husband said early on that he would support me in whatever decision I made, and he has.”
In her 42 years on the job, Cynthia Cantril, an expert in cancer nursing who works at Sutter Pacific Medical Foundation in Santa Rosa, Calif., has observed that how a woman feels about her choice regarding reconstructive surgery — both at the time and years later — depends on her confidence in her initial decision.
That decision does require some time and some thought.
“Making a decision about reconstruction may feel like an emotional emergency, but most often, it is not,” Cantril said. After a cancer diagnosis, she calms the patient down and “then I tell them to sit with the decision about reconstruction for a while. I tell them to go to a support group, talk to other women, write down a list of personal pros and cons.”
She added, “This is not a one-size-fits-all issue.”