A patient's decision: Breast cancer survivors choose double mastectomies

Sunday, March 10, 2013 | 6:00 a.m. CDT; updated 6:17 p.m. CDT, Monday, April 15, 2013
Women face the decision to remove a healthy breast with a double mastectomy after having breast cancer in one breast. Research shows that the number of women opting for double mastectomies after breast cancer is increasing.

COLUMBIA — It was a routine mammogram before reconstructive surgery on her healthy left breast. She'd lost the right breast to cancer and was having surgery to make her breasts look symmetrical.

Yvonne Ball didn't expect to have the mammogram until her doctor suggested it. The outcome was even more unexpected: "Something" appeared in the results.

Just two months earlier, Ball endured three months of surgeries and chemotherapy.

"At that point, I was such a wreck,” Ball said. “I remember crying when I was getting the biopsy done, and I thought, ‘I can’t do this again.'"

Before her doctor could inform her that she didn’t have cancer in the left breast, she told him she wanted it removed.

Ball, 61, is among an increasing number of women who are choosing to get a contralateral prophylactic mastectomy, which is the removal of a healthy breast to avoid another breast cancer diagnosis. The number of women undergoing the procedure has more than doubled, while the number of women choosing to remove only one breast has decreased, according to research from the University of Minnesota.

A recent study by the University of Michigan reported about 70 percent of women who receive a breast cancer diagnosis in one breast choose to get a double mastectomy. The researchers were concerned that women were not making informed decisions and as a result, getting unnecessary surgery. 

In January, Miss America contestant Allyn Rose roused conversation about prophylactic mastectomies. Rose has a family history of breast cancer and plans to remove both of her breasts, despite the fact she does not have breast cancer, according to CBS News.

Most people choosing to get a prophylactic mastectomy are not at a high risk, said Mark Vellek, a medical oncologist at Missouri Cancer Associates. A woman who has had therapy, such as radiation or chemotherapy, has about a 0.1 to 0.3 percent risk per year of developing cancer in her healthy breast. Even if a woman gets a double mastectomy, she could still have a cancer recurrence in another part of her body, he said.

“The question is, is this procedure appropriate?” Vellek said. “It is kind of an extreme thing to do for peace of mind.”

An individual choice

Usually, Vellek sees patients after they have met with a surgical oncologist and already made the decision to get a prophylactic mastectomy. Some surgeons suggest the procedure while others do not, he said.

“It really falls to the surgeon to say, ‘Hey, you don’t really need this,’” Vellek said. “And that is a tough position. The patient comes in knowing what they want, and you’re trying to talk them out of procedure that is probably a little excessive, and if you don’t … they will find someone else who will.”

Most women do not require a prophylactic mastectomy after being diagnosed with breast cancer, said Paul Dale, a surgical oncologist at the Ellis Fischel Cancer Center. Dale said women might want to consider the procedure if they have the BRCA1 or BRCA2 gene mutation, which greatly increases a woman’s chance of breast cancer, or if they have a very strong family history of breast cancer. Every woman is different, so treatment is individualized, Dale said. 

He frequently talks to women who have been diagnosed with breast cancer and are terrified; they want a prophylactic mastectomy if it means they'll live longer and never get cancer again, he said. 

Although Dale tells women who are considering a prophylactic mastectomy that the risk of getting cancer in the opposite breast is low, many women are still afraid and choose to get a mastectomy. Helping a woman make the right decision at that point in her life, even if the decision is a prophylactic mastectomy, is most important, he said.

“It is their choice and that ultimately is the bottom line here,” Dale said. “It is a woman’s body, and it is her choice to make health care decisions regarding what she thinks is right for her, after hearing all of the treatment options.”

The decision is not black and white, said Mary Muscato, a medical oncologist at Missouri Cancer Associates and attending staff physician at Boone Hospital Center.

“You have to consider the process of what your life is like when they are checking for a second breast cancer, and note the anguish that people go through," Muscato said. "It's not just that you await the call or letter every year, or every six months, it's the fear that this time, you have to walk down the terrifying path towards cancer again."

Avoiding worry

Mammograms, biopsies, radiation, chemotherapy, ultrasounds, MRIs — Pam Neugebauer wanted them out of her life.

Neugebauer, 54, who lives in Jefferson City, was 49 when her mammogram showed a tumor. She felt lucky because her doctor told her the cancer was deep and that she would have never have felt the lump in her breast.

That was when the “first little bell went off in my head,” she said.

“If I could do everything in my power to avoid it coming back, at least I would not have regrets if it returned," Neugebauer said. "The thought of death never really goes away, or the thought of recurrence. And that’s something you battle with for the rest of your life."

Neugebauer was terrified when she got the news she had cancer and felt overwhelmed by the onslaught of decisions. She thought her physician would make the decision about whether to take off the healthy breast as well, thinking there was a right and wrong choice.

But her doctor left it up to her. When she told him she wanted a contralateral prophylactic mastectomy, she asked him if he was mad at her. He laughed, Neugebauer said. He said he wasn’t mad, and that neither choice would be wrong, but she needed to make that decision herself.

"I had to go with my gut instinct,” she said. “I wondered if I was doing overkill, but I knew I never wanted to have guilt in my own mind and have to do it again. I just thought, I’m going to do it now and get it over with and never look back."

Lisa Gale, 53, also from Jefferson City, felt confident, too, in her decision to get a double mastectomy and reconstructive surgery. When Gale's surgeon told her she needed a mastectomy, she knew she wanted both breasts off. Her surgeon told her the chances of getting breast cancer in the other breast were low, but Gale wanted to move on with her life.

“I worry about every little thing anyway, so for me it was a decision to not have to worry about getting breast cancer again,” Gale said.

'A tough journey'

Every day, Gale is reminded of her surgery. After she puts her clothes on in the morning, she doesn't think about it. But at night she must undress and shower, and the reminder is still there.

"It’s a tough journey to go through to look at yourself in the mirror and try to regain your composure every day," she said. But that's outweighed by not having to worry about getting breast cancer again.

"I struggle because my results weren’t beautifully perfect," Gale said. "You just have to remind yourself why you look like you look."

Gale can’t wear a low-cut top without showing the surgical scars and the skin discoloration from radiation. But with clothing on, you can’t tell she's had breast reconstruction.

"I don’t know if it’s pride or vanity or just part of being a woman," Gale said. "It's sad to lose that part of you."

She hopes to get more reconstructive surgery if she can to improve the way her breasts look. But right now, she's not ready to have surgery again.

Breast reconstruction helped Ball get through the grieving process and the experience of having cancer.

"It helped me deal with it mentally," she said. "I didn’t feel like I looked terrible."

Moving on

In 1989 when Monica Fisher, 56, had breast cancer for the first time, her doctor did not advise a double mastectomy. She knew her odds of getting cancer again were low, and she never considered a contralateral prophylactic mastectomy, she said.

After a lumpectomy on her left breast, she lived 17 years without cancer. So Fisher was shocked when a new tumor was found in her right breast, requiring a mastectomy. At first, her doctors suggested a double mastectomy, but later they decided that the procedure, combined with a new reconstructive surgery, would require too lengthy of a surgery, she said.

"I kept thinking about going back and having the left side done, but I never got around to it,” Fisher said. “I was tired of surgeries."

This year, she was diagnosed with cancer in her left breast. She has now had a lumpectomy and two separate mastectomies with reconstructive surgery. 

"I just thought, I’ve got to get this cured and move on with my life, and I never thought about anything else,” Fisher said. “It really wasn’t all that traumatic for me — you’ve got to get it cured, get over it, get on with it and don’t think about it."

If Fisher had removed both breasts in 1989, she would have avoided multiple surgeries and treatments spread out over 24 years, but she has never regretted her decisions.

“How do you know?” she said. “You don’t.”

Supervising editor is Katherine Reed.

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