Extremely Personal Choices
More women opt for a double mastectomy, but does it really prevent anything?
ILLUSTRATIONS BY JACQUI OAKLEY
For women with genetic mutations like BRCA1 and BRCA2, the recommendations for treatment are scorched-earth in nature but potentially useful in their clarity: Remove the vulnerable tissue and organs.
But for the hundreds of thousands of women with no mutation who are diagnosed with breast cancer each year, the treatment options can be both less invasive and murkier.
“The procedure choice is extremely different in those two populations,” says Sarah Hawley, professor of internal medicine of the University of Michigan Comprehensive Cancer Center.
Hawley studied the treatment choices of 1,447 women, and 10 percent of them had either a genetic mutation (BRCA1 or 2) or a strong family history. Women who are not at high risk of a new primary breast cancer (defined as a strong family history or genetic mutation) have a low risk of developing cancer in the unaffected breast. Their risk is about the same as that of women in the general population.
Her study found that about 70 percent of women who have double mastectomies were in the group with no elevated risk for cancer in the other breast. “That would suggest something else [besides clinical factors] is driving that decision,” Hawley says.
Indeed, 90 percent of the women in the study who had opted for double mastectomy said they were very worried about the cancer recurring. “It’s being seen as preventive, but that’s a bit of a misnomer because you’re not preventing anything.”
Most women who opt for double mastectomy — whether they have a clinical indication for it — have reconstruction, which means additional surgery.
“Anytime you undergo a lot of surgery, you raise the risk of complications and recovery time,” Hawley says. “The recovery from reconstruction can be quite lengthy. It’s important that people really understand the risks are there.”
Surgeons don’t typically present the double mastectomy as a treatment option for patients who are not at high risk of a new cancer in the other breast. The increase in rates of double mastectomy in women who are not at high risk appears to come largely from patient demand.
“What we’re seeing is one of the primary reasons women are opting to have the second breast taken off is they’re very scared,” says Dr. Adeyiza Momoh, an assistant professor of surgery at the University of Michigan. “They’ve had a devastating diagnosis. The research doesn’t say they’re high risk. But even if you tell a patient she’s low risk, they basically don’t care. They don’t feel low risk and they don’t want to go through this again or to have their family go through this again.
“Having the other breast taken off isn’t without problems; you could have complications on that side, you could have an unsuccessful reconstruction on that side,” he adds. “From our perspective, if it’s not necessary to do, we’d rather not. But from the patient side, in terms of not having the anxiety after their treatment, there is benefit to having both taken off. In terms of having peace of mind, we’re finding there is some benefit.”
Flora Migyanka, a Plymouth resident and mother of two, chose a double mastectomy following a cancer diagnosis in her right breast in 2012 at age 40. Her diagnosis precluded a lumpectomy, and achieving symmetry after a unilateral mastectomy would have required a lift on her left breast. Instead, she opted for a double mastectomy and a single-stage reconstruction, meaning she had breast implants put in during the same surgery as her mastectomy. Not all women are candidates for the procedure, which took seven hours for Migyanka.
“I felt I wouldn’t have to constantly worry and be reminded,” she says of her decision to have a double mastectomy. “Otherwise I would have had to return for mammograms every six months. I didn’t want to live in fear, and I really wanted to have a good cosmetic outcome. I knew there was no survival advantage. But my body image and how I feel weighed heavily on me.
“I feel it’s your own body and your own journey, and it’s very important to gather all the information you should and decide what’s best for you,” Migyanka adds. “No one else can make that choice for you. I have no regrets whatsoever. I’m very happy with my decision.”
Hawley acknowledges the decision is “an extremely personal choice,” and says women should fully explore treatment choices. “We’re really trying to understand their decision-making and how to help them not feel like [a double mastectomy] is their only option,” Hawley says. “There are other options where the outcome can be quite good and recovery can be easier, and you don’t have to feel like you didn’t do everything you could.”
Reconstruction after mastectomy
Women with breast cancer face overwhelming choices. For those getting a mastectomy, the options include whether — and how — to pursue reconstructive surgery.
Momoh, who specializes in reconstructive surgery, says women should consider their daily activities, family life, job, and other responsibilities as they make their decisions about reconstruction.
“All things being equal, they have a choice,” he says.
Broadly, women can opt either for implants or for reconstruction using their own tissue. Both approaches require 2-3 procedures for women who are also undergoing mastectomy.
In the United States, more women opt for implants, which are widely available and have an easier recovery time.
Tissue reconstruction, on the other hand, is complex and time-consuming. Not all surgeons are comfortable performing it. The process takes tissue from another part on a woman’s body, with limits on size based on the amount of tissue a woman has for use.
On the other hand, tissue-based reconstruction typically results in breasts that look and feel more natural. Tissue is more durable, requires less maintenance, and tends to retain its look — all valid factors to consider now that many women can expect to live for decades after a diagnosis. Implants can rupture or create scar tissue, requiring further surgeries.
Women with cancer in one breast face similar options, and can work with their surgeon to achieve symmetry, either with implants, tissue reconstruction, and/or lifts. “We can get close symmetry even with a one-sided mastectomy,” Momoh says.
“We don’t want patients to think that in order to get both sides to match they have to get both taken off,” he adds. “Not at all.
“I like patients to make decisions about their cancer treatment completely independent from their decisions about their reconstruction,” Momoh says. “You don’t want to put the cart before the horse. We want you to make the right decision for yourself from a cancer standpoint, then we’ll do what we need to make you look good.”
Partial-breast radiation treats only the part at highest risk, with results equal to mastectomy
Women in the earlier stages of breast cancer can now turn to a fast form of radiation therapy that can be as effective as mastectomy in removing the disease.
Accelerated partial breast irradiation, a technique doctors at Beaumont Health System helped develop, treats only the part of the breast at highest risk. The technique delivers a tiny radioactive seed to the affected area through an applicator inserted in the breast, and allows for treatment to be completed in as little as two days — compared with the standard six weeks for traditional radiation therapy.
“The vast majority of patients don’t have to fear the fact that they have to have mutilating surgery,” says Dr. Peter Chen, a radiation oncologist at Beaumont. “If there is no family history and the stage is relatively early, partial-breast radiation now has results that are equal to mastectomy.”
The standard approach mimics what a mastectomy would do, but that can be overkill for women whose cancer is in an early stage and therefore contained to a small area. Partial-breast radiation, by treating less tissue, can be completed more quickly.
The technique has evolved from requiring inpatient treatment in the early ’90s, to a five-day treatment a decade later, to the two-day approach in use since 2004. The first set of patients to undergo the two-day treatment is showing 100 percent control rate for the disease, Chen says.
Side effects are minimal, with the most common being skin redness and swelling around the treatment site.
Rose Edwards, 63, was diagnosed with Stage 2 breast cancer in 2004. Following a lumpectomy, her surgeon referred her to Chen, who offered her the option of the five-day regimen.
“I had had several friends who went through standard radiation,” she says.
“They said it wasn’t the radiation itself [that was difficult], but that you go for several weeks, and it got very tiring.”
Edwards was an elementary school principal at the time, and her cancer already had cost her time at her job. She missed her students and staff, and so opted for the shorter treatment, going two times a day for five days.
“When you’re diagnosed with cancer, you feel like life is spiraling out of control,” she says. “There are so many things you don’t have any choices about. This was something I could control.
“If you work, you can get treatment in the morning, go to work, and then go back later that day and still be finished in one week. And you feel like you have some control over your life; that was the best part.”
Edwards says she experienced little in the way of side effects, and described the feeling of having the applicator in her breast “minor discomfort.” Treatments lasted just a few minutes each and were painless. On her final day, the applicator was removed and the insertion site stitched. She followed the treatment with a standard round of chemotherapy.
Chen sometimes refers anxious patients to Edwards so that she can share her experience.
“I’ve reassured them, you don’t feel anything,” she says. “For me, it was ideal. And it was wonderful to have the option.” —Alexa Stanard