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Health Watch: Double mastectomies

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From the July 2014 issue of Columbus CEO

A growing trend in cancer treatment, the bilateral mastectomy, has women opting to remove both breasts when cancer is detected in one, or even when no cancer has been found but a risk is present. Some say the peace of mind the procedure offers outweighs the risks, while others think the procedure is often a choice born of fear. Medical journals posit that women know intellectually that bilateral mastectomies have not been proven to increase length of life, but when emotions come into play, everything changes.

Dr. Pankaj Tiwari, a board-certified plastic surgeon with Midwest Breast and Aesthetic Surgery, says he has seen an increase in such procedures but hesitates to recommend it unless it is an unquestionable benefit for the patient. He attributes the uptick in numbers to an increased awareness brought on by media coverage. But aside from that, he says the trend can also be linked to improved imaging and genetic testing.

“While testing has progressed, treatment has not,” he says. “From the patient’s perspective, we have given her the information that she has a small tumor but we haven’t really given her any alternative other than surgery.” The patient is left with that information, which can easily segue into anxiety.

Tiwari specializes in using the patient’s own tissue for reconstruction after a mastectomy. During reconstruction, whether on one side or both, skin and fat are taken from the abdominal area, blood vessels are reconnected and the patient’s own tissue is used to rebuild the breast. “I would never prioritize the reconstruction over the surgery, and I never push a patient one way or another,” he says. “It is ridiculous to expect to create a normal breast. The best we can do is match the normal breast.”

Dr. K. Roxanne Grawe, a plastic and reconstructive surgeon and medical director for Mount Carmel System Breast Services, also works with women who have had mastectomies, and she has seen a surge in bilateral procedures.

“It’s a huge national trend right now,” she says. “It’s a subject that is debated all the time.”

She says many of her patients who have chosen the bilateral procedure have done so because it puts their worries to rest.

“I agree with people who are doing this for peace of mind,” Grawe says. “With digital mammography, we are seeing cancers really early. When you discover something very small, you don’t know whether it’s going to turn into something terrible or be nothing at all.”

She says she can understand how the uncertainty might uproot a person’s life.

“These women will be plagued by having to do tests and biopsies,” she says. Any time a hint of something suspicious appears, the patient will have to wait several days for further testing, then wait another week for biopsy results. “Every time this happens, they go into panic mode,” Grawe says. Women are being diagnosed earlier because of improvements in imaging technology, and some are choosing not to go through the worry for the next 50 years, she says.

She thinks that improvements in surgery might be another reason for the increase in bilateral mastectomies. A radical mastectomy used to take the entire breast, along with the underlying pectoral muscle. “Women looked deformed, but it was the standard of care,” Grawe says. Today’s surgeries save as much tissue as possible. Grawe typically uses implants in reconstructive processes.

“With skin-sparing mastectomies, we can create some really nice looking reconstructions,” she says. “Women aren’t as scared of a big surgery because they know they’ll look good afterward.”

Like Tiwari, Grawe says increased knowledge and media exposure also play a role.

“Genetic testing is being done more often, and often when you know the genes are positive, bilateral mastectomies are recommended,” she says. Actress Angelina Jolie’s elective double mastectomy was highly publicized, and that brought more attention to the procedure, Grawe says.

Grawe says there is fierce debate over whether or not the procedure should be done when not strictly necessary. She says she falls on the side of it being acceptable if it’s what the patient wants.

“Women are beating breast cancer left and right,” she says. “Now quality of life is so important. I don’t want to say this lightly, but breast cancer is more just a bump in the road than it used to be. People are going to survive, and they want to move on and have peace of mind.”

The patient’s mindset can have an enormous effect on recovery. Grawe says that breast augmentation and breast reconstruction are similar procedures, but cancer patients typically report more pain and longer recovery times. “I think it’s got so much to do with the mental state,” she says. “These women have a huge sadness associated with their pain, and it takes longer as a whole person to recover.”

But a long recovery isn’t a foregone conclusion, she says. One patient left the hospital the day after surgery and was at a barbecue with friends that weekend. “A lot of it is mental,” Grawe says. “It’s important to have a great support group, and to have the right mindset. Ask to see pictures so you’ll have a mental picture of what’s going to happen. The scariest part is the unknown.”

To that end, some hospital systems provide concierge service to guide patients through the potentially frightening process. At Mount Carmel, the guides are called nurse navigators.

“That person’s job is to help the patient through the whole process in a way that is very specific to that patient,” Grawe says. The guide helps the patient tackle financial issues, connect with a psychologist, set appointments with the oncologists, surgeons and reconstructive surgeons, and shop the boutique for post-op undergarments. With the flood of information (and misinformation) available today, the process of knowing where to turn can be daunting.

Jill Petty-Bryant sought information from every quarter, checking into both traditional and alternative medicines, then opted for a bilateral mastectomy after her 2009 diagnosis.

Petty-Bryant saw a doctor after noticing fluid leaking from one breast. Tests showed that she had developed invasive ductile carcinoma. In her case, a lumpectomy was not an option, so she had some difficult decisions to make.

Some signs were very positive. She tested negative for harmful mutations on the BRCA1 and BRCA2 genes that would have indicated a greater disposition toward recurrent cancers in other body systems. She also had little family history of breast cancer – only a great-aunt who developed cancer in her late 50s.

“They were explaining all the details and telling me I could do a single mastectomy or bilateral mastectomy,” she says. “They told me that, every year, the risk of developing cancer in the other breast went up by four percent. That meant a lot, because I was only 32 at the time of diagnosis.”

Because of this, she chose the bilateral procedure, and the peace of mind that would come with it. Petty-Bryant went through chemotherapy, surgery and then daily radiation treatments. She opted to forgo reconstructive surgery, so she wears prosthetics instead. Although she was not overly obsessed with outward appearance, making the decision to part with her breasts was jarring at first.

“They were part of who I was,” she says. “The obsession we have with breasts in our culture made it difficult.”

Although Petty-Bryant is still battling some stubborn cancer cells that have shown up in lymph nodes, she says she is glad she opted for the procedure she did. She is careful about what goes into her body, she monitors her health closely and she has plans to encourage her daughters to begin getting mammograms in their early 20s – about a decade before she herself was diagnosed.

Megan Burke also opted for the bilateral procedure after getting an alarming call following a routine mammogram.

“Within about two hours, they called and told me I needed to come in for more testing,” she says. “I think I just knew then.”

Indeed, doctors did find cancer in one breast – five tumors, all 2 cm or less in diameter, each of which had been there an estimated five to seven years. A baseline mammogram two years prior, at the age of 38, had shown nothing.

Burke says that she appreciated the way her doctors presented all the possible courses of treatment but did not push her in one direction or another. The decision was totally hers, and she chose the bilateral mastectomy.

“To be honest, it wasn’t worth the worry I’d have if I had to go through this again,” she says.

After her November 2013 diagnosis, she went through chemo and then had her surgery – the first steps of reconstruction included – at the end of December. She began radiation in late May as a further safeguard, and now expects life to get back to normal. Not that it’s been all that out of the ordinary – Burke made every effort to maintain the status quo during her treatment.

A fifth-grade teacher in a Columbus school, she surrounded herself with normalcy by taking minimal sick days and staying focused on the people she loves, namely her family and her students, who have all been tremendously supportive during her ordeal.

“I want to feel as normal as possible,” she says. “Being cooped up in my house makes me feel more sick than the chemo.”

Burke wrapped up her chemo just prior to the weekend of Race for the Cure, in which she was participating with friends and family. That same week, her students threw a party at school for which everyone, even the boys, dressed in pink to celebrate her recovery and her road back to a regular life.

Kristin Campbell is a freelance writer.