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Women Lack 'High Quality' Guidance Post-Mastectomy

cindy carnahan

At 39 years old, Kimberly Barnes learned that she had a 69% chance of developing breast cancer by the time she was 80. That’s a staggering number compared to the average woman’s 12% risk. Barnes carries a mutation in the BRCA2 gene that predisposes women who have the gene to breast cancer. Knowing that she wanted to live the longest, highest quality life possible, Barnes decided to have a preventive double-mastectomy.

To her, a long, high-quality life meant continuing her work as a stay-at-home mom to her two young children and living to see high school graduations, weddings, and the births of grandchildren without the fear of being sidelined by cancer treatment. Breast reconstruction surgery after her mastectomy, Barnes determined after much research, ran counter to those plans.

Like Barnes, most women -- some 60% -- pass on breast reconstruction after mastectomy. It’s less common, however, for a woman to be as informed as Barnes and to make a decision so well aligned with her goals, says a recent study in the Journal of the American Medical Association (JAMA).

The decision to have breast reconstruction after mastectomy is a complex one. There is no standard recommendation. Instead, the choice ought to be based on what’s important to each woman. Choosing the option that best aligns with a woman’s values and preferences requires ample information about the risks, benefits, and expected outcomes of each.

“A woman needs to think about her goals -- whether it’s the quickest recovery so she can get back to her kids or to have the most natural looking and feeling breasts possible -- and push that back to her provider by saying, ‘How do my goals fit with these options?’” says Clara Lee, MD, a plastic surgeon who specializes in cancer reconstruction at Ohio State University Wexner Medical Center in Columbus. Lee co-authored the JAMA study.

A decision that doesn’t match one’s wishes

Among women who have mastectomies, as many as 57% make decisions about reconstruction that are misaligned with their priorities and based on limited understanding of their options. Lee’s study evaluated the decisions of 126 women.

About 40% had breast reconstruction after mastectomy, while the remainder did not. The women completed a test of their understanding of their options, including risks, number of procedures required, the difference between types of reconstruction, the effect of radiation, women’s satisfaction rates with the choices, and risk of recurrence.

They also answered a questionnaire about their preferences regarding having a breast shape and the risk, number of procedures, and duration of recovery they would accept.

The study authors then determined which option -- mastectomy with or without reconstruction -- was best aligned with the preferences each of the women had expressed. For example, if a woman ranked having a breast shape higher than any other concern on the questionnaire, reconstruction was the best option for her. The authors calculated the number of women whose choices reflected their preferences.

A woman’s decision was “high quality” when she scored a 50 or higher on the knowledge test and her ultimate choice aligned with her preferences. Based on these criteria, just 43%of the women made high-quality decisions.

But how does such a mismatch happen?

“Patients whose preferences show they are really concerned about complications, for example, but don’t realize what the risk [of reconstruction] actually is, might end up agreeing to a surgery that they would have thought twice about if they had really understood the risks,” says Lee.

The same was true on the other side, Lee says. Some women whose questionnaire indicated a preference for reconstruction didn’t end up having it.

“This implies that their knowledge of what these procedures entail prior to the process isn’t very good,” says Grant Carlson, MD, a breast surgeon at Emory Winship Cancer Institute in Atlanta.

The deciding factors

Cindy Carnahan had all the information she needed. “The idea of feeling and looking whole again after two surgeries was very exciting to me,” she says. Carnahan, a 62-year-old retired art teacher, had her left nipple removed several years ago when doctors found cancer there, a condition called Paget disease of the breast. After a mammogram uncovered more cancer early this year, Carnahan’s doctor recommended she have the breast removed.

“It was like a two-by-four to the side of the head. I thought I was finished with this,’” she recalls.

After her mastectomy in February, Carnahan started the process of breast reconstruction. “I’m in good health. I’m single, I just retired, I’m going to be traveling, and I was looking forward to just looking normal again.”

While Carnahan was still under anesthesia for the mastectomy, Lee, her plastic surgeon, inserted a tissue expander under the chest muscle. Every Friday for the next 6 weeks, Lee injected fluid into the expander until Carnahan’s left side matched the right. The procedure stretched the muscle to make room for the permanent implant. Once the fluid injections were complete, it took about 6 more weeks until Carnahan’s muscle was fully stretched and ready for the second and final surgery to insert the permanent implant.

Just days after the surgery and still in bandages, Carnahan said, “I’m feeling good, and I already look so normal. I’m so glad I did this.” She adds, “It was definitely a process, and it wasn’t painless, but I could put up with it and even get excited about it.”

Barnes, on the other hand, wasn’t ready to give up the time that reconstruction would take. “The doctor said I wouldn’t be able to drive for 4 to 6 weeks. That would detract from my quality of life with my kids,” she says. After her mastectomy, she was back behind the wheel in a week with all the time she needed to consider breast reconstruction. She thought of everything.

Barnes didn’t want to risk complications now or later. Like any major surgery, breast reconstruction, whether with implants or the body’s own tissue in what’s known as a flap procedure, has risks. Some women feel pain around their implants. Several complications of implant reconstruction can require additional procedures later. For example, radiation after implants can cause a hardening of scar tissue around the implant. Necrosis, when tissue around the implant breaks down and dies, can cause pain, bleeding, bruising, oozing sores, numbness, and fever and require treatment. Implants can shift or leak over time.

A flap procedure, which can result in more natural looking and feeling breasts, uses tissue from your abdomen or back to reconstruct the breast. In addition to risks like those of implant surgery, flap procedures pose risks for the area from which the tissue is taken, including weakness, loss of function, and loss of sensation.

Reconstructed breasts, Barnes learned, wouldn’t have the same sexual sensation as her natural breasts. With scars and the loss of her nipples, she didn’t feel they would look like the breasts she once had. And they wouldn’t change with her body as she ages or as her weight fluctuates like natural breasts do.

“It’s important for women to realize,” Barnes says, “whether you do reconstruction or not, you’re never going to have this part of your body back, and that’s a big loss,” she said.

With her husband’s full support, which was crucial for Barnes, she decided to use prosthetics rather than undergo reconstruction. Barnes liked the fact that prosthetics -- typically a silicone gel breast form -- that you wear in your bra can be swapped out over the years to fit your changing body. They move like natural breasts, she says, and she can wear them inside a swimsuit in the pool. Barnes puts on her prosthetic breasts as soon as she gets dressed every morning, even if she doesn’t plan to leave the house.

“This allows me to look at myself in the mirror and see the same person I was before the surgery,” she says.

The choice is individual

Whether to have breast reconstruction after mastectomy is a deeply personal choice with numerous considerations. The good news is that you can take all the time you need to decide. The Women’s Health and Cancer Rights Act of 1998 allows a woman to choose at any time after her mastectomy -- even years later -- to have breast reconstruction covered by her health insurance.

“Reconstruction is not an emergency,” says Carlson. “You need to take the time to really understand everything.”

Carlson and Lee recommend that women bring up reconstruction options with the breast surgeon that treats their cancer rather than waiting to speak to a plastic surgeon. Studies show that not everyone gets a referral to a plastic surgeon, unless they ask. But everyone who has a mastectomy for breast cancer has the right to reconstruction, though no one is required.

“My doctors assumed I was going to want to have reconstruction,” Barnes says. “So they told me about those options, but I don’t think they always provide information about not doing reconstruction at all.”

While Barnes and Carnahan chose two different paths after their mastectomies, their advice for other women is the same. “As positive as I have been about the whole process for me,” Carnahan says, “it’s about what matters to you.”

Ask yourself and then your doctor

Your choice to undergo breast reconstruction after mastectomy will depend on many things.

First, ask yourself what’s important to you:

  • How important is a permanent breast shape?
  • How quickly do you want to get back to your normal routine?
  • How much risk are you willing to assume?
  • How many procedures are you willing to undergo?

Ask your doctor these questions:

  • What are the advantages and disadvantages of each option available to me?
  • How many procedures are involved in each option?
  • What is the recovery time for each option?
  • What are the risks?
  • What’s the probability of each of those risks occurring?
  • What can I expect my breasts to look and feel like? 
  • Can I do reconstruction later?
  • What are the advantages and disadvantages of doing it now?
WebMD Article Reviewed by Brunilda Nazario, MD on September 29, 2017

Sources

Kimberly Barnes, breast cancer patient.

Journal of the American Medical Association.

Clara Lee, MD, Ohio State University Wexner Medical Center, Columbus.

Grant Carlson, MD, Emory Winship Cancer Institute, Atlanta.

Cindy Carnahan, breast cancer patient.

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