Less is More
Why some women decide against breast reconstruction after mastectomy
By Lisa Fields

Ebony Robinson had been caring for her 1-year-old son, born premature, when she was diagnosed with breast cancer. At 36, she underwent a a bilateral (double) mastectomy, and then decided against breast reconstruction. “I didn’t want to put myself in bed when I needed to be taking care of him,” she says.

Ebony Robinson, now 42, chose to forgo breast reconstruction to care for her son, who was 1 year old at the time of her diagnosis

Ebony Robinson, now 42, chose to forgo breast reconstruction to care for her son, who was 1 year old at the time of her diagnosis

“I just realized breasts didn’t make me. I was OK without having breasts, as long as the cancer was out. It felt like it was the best thing for my life.” Six years later, Robinson is still glad about her initial decision.

“Having no breasts does not change you,” she adds. “It only changes you when you allow it to.”

Whether to have breast reconstruction after mastectomy is a very personal decision that requires a woman to consider her physical, emotional and sexual needs. Everyone who is faced with the choice has different factors that impact her decision.

“It’s important for women to step back from the cancer diagnosis and make a good, long-term decision about reconstruction,” says Kristin Brill, MD, program director of the Janet Knowles Breast Cancer Center, MD Anderson Cancer Center at Cooper. “It’s not just an issue of vanity.”

Today, breast reconstruction is a very real, affordable option for any woman who has had a mastectomy. The Women’s Health and Cancer Rights Act of 1998 guarantees that women who have mastectomies will receive health insurance coverage for breast reconstruction. This legislation has helped to make breast reconstruction possible for a growing number of women nationwide. In 1998, only 46 percent of women who had mastectomies had breast reconstruction, with 54 percent receiving no reconstruction. By 2007, 63 percent elected to have reconstructive surgery, according to a 2014 study published in the Journal of Clinical Oncology.

South Jersey women are having (and refusing) breast reconstruction at roughly those 2007 rates.

“With any trend, we forget that there are women who choose not to participate,” Brill says. “About one-third of women in 2014 chose no reconstruction. The majority were in the 60-plus age group.”

There are different reasons why women decide against breast reconstruction. Many don’t want to complicate the healing process with more surgery.

“They don’t want another trip to the operating room, a more labored follow-up,” says Maurice Cairoli, MD, a medical oncologist at Regional Cancer Care Associates in Mount Holly. “They want to make their surgical management as concise as possible.”

Other women may find that after their cancer diagnosis, their priorities have changed and they aren’t as concerned about physical appearances.

“Once they’ve gone through cancer, chemotherapy, radiation, it’s like going through a war,” says Cori McMahon, PsyD, director of behavioral medicine for the MD Anderson Cancer Center at Cooper. “Sometimes having a certain aesthetic or being concerned about people noticing is no longer a priority.”

Ruth* of Cherry Hill was in her 70s when she was diagnosed with breast cancer. Before her 2010 bilateral (double) mastectomy, Ruth’s doctor suggested she consider having breast reconstruction. Ruth met with a plastic surgeon and discussed the matter with her husband, but ultimately, she decided against the additional procedure. Five years later, Ruth is still happy she declined reconstructive surgery.

“I thought, ‘I don’t want to have another surgery and more pain,’” she says. “My overriding thought was: I want to live. Period. I’ll do everything to live, and I won’t do anything to possibly jeopardize my health.”

Brill notes that women who opt against breast reconstruction – especially patients younger than 60 – often share similar personality traits. “They are women who are very comfortable with their body image and who they are,” Brill says. “They’re very self-assured. If they’ve got a partner, they’ve got a strong relationship and support from that end.”

Self-assuredness and having a supportive partner can be immeasurably important when a woman considers how her sex life will be affected by her decision to bypass reconstruction.

“I don’t think it’s any secret that our society places emphasis on breasts as a sexual object,” McMahon says. “A woman may worry, ‘My partner will no longer find me attractive, because I no longer have my breasts.’ But we’ve done some research, and partners are way less concerned about the appearance than the partners’ wellbeing. The partner says, ‘I’m just glad she’s alive.’”

Whether or not a woman has breast reconstruction, communicating with her partner about sex is crucial. Some couples become less intimate after a mastectomy. The woman may believe it’s because she no longer looks appealing, but that often isn’t the man’s concern.

“When we ask, ‘Where has the intimacy gone,’ the man says, ‘I’m afraid to touch her and hurt her,’” McMahon says. “Your partner is wondering, afraid. He doesn’t want to hurt you. You have to say, ‘It’s OK to touch here,’ or ‘It’s not,’ or ‘It’s a little tender.’ We want our partners to read our minds in the bedroom, but they need to hear what we want and what we think will work.”

Some women are hesitant to consider breast reconstruction because they worry it could negatively impact their future breast health, but this is an unfounded concern.

“Breast reconstruction doesn’t make it harder to detect a recurrence,” Cairoli says. “And having breast reconstruction does not inhibit the ability to deliver appropriate care.”

Other women may be concerned that breast reconstruction could be detrimental to nerve sensation in the chest region. But the nerves are affected by mastectomy, whether or not a woman chooses reconstruction. “Typically, there is a band of numbness around the mastectomy incision in both scenarios,” Brill says.

Many women who skip reconstruction get prosthetic breasts to place in their bras or bathing suits. This helps to give them a balanced look, especially if they’ve only had a unilateral (single) mastectomy. Some women seeking simplicity skip prosthetic breasts, while others who have prosthetics don’t wear them all the time.

“A lot of women find them annoying or burdensome,” McMahon says. “They might wear it somewhere nice like a wedding, but when they’re home, it’s very freeing not to wear it.”

Typically, “women get surprised that there’s very little attention focused on the flat chest area,” McMahon says. “It’s very liberating.”

Because women’s clothing is cut to account for breasts, women who skip reconstruction and don’t wear prosthetics may have trouble finding blouses or dresses that fit well. But there are things that women can do to give themselves a more balanced look.

“Look for a print, or you can wear a scarf to draw attention away from the breasts,” McMahon says. “Look for something with breast pockets or wear layered clothing, maybe a cardigan.”

If you’re faced with the news that you need a mastectomy and must decide whether or not to choose breast reconstruction, doctors urge you to take time to make the right decision. (It’s possible to have breast reconstruction months or years after mastectomy, but the ideal time to make the decision is prior to the initial surgery.) These tips may help:

Meet with a surgeon. Make an appointment with the doctor who would perform the surgery to find out whether breast reconstruction is right for you.

“Ask lots of questions,” McMahon says. “Things like: How many women decide against reconstruction? What will the scars look like? Will I?still have sensation on my chest? Do you have pictures? What is my realistic outcome? If you have reasonable expectations, you have less trouble adjusting.”

Ask other patients. Breast cancer survivors are often willing to talk about their experiences, and they may even show you what their reconstructed breasts or mastectomy scars look like.

“Surgeons have books with pictures in their offices so they can show patients, but I find that doesn’t do it justice,” Cairoli says. “It’s always nicer if you can see for yourself. I find that women with breast cancer are always very, very happy to be there for other folks who are going through this, to say, ‘This is what my implant looks like,’ or ‘I opted not to, and this is what my mastectomy scar looks like.’ They want to pave the way and help you.”

Discuss options with your partner. Talking things through with your spouse can help you realize where your priorities lie.

“My husband was wonderful through this whole thing,” says Ruth. “He said he loved me – he didn’t love me for my breasts. Men can understand and accept, and still think you’re lovely and sexually interesting, even if you have a double mastectomy.”

Own the decision. If you decide against breast reconstruction, do it for positive reasons, such as simplifying your life, rather than out of fear.

“There are women who really embrace it,” Brill says. “I’ve had women tattoo their mastectomy scars with vines and flowers, making something positive about it. The two strongest factors among women who successfully do no reconstruction are that they have a really good sense of self-image before going into surgery and a good, strong relationship. That’s key.”

 

*Last name withheld by request

May 2015
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