Women with precancerous tumors: Reconsider surgery

While science has developed tests to find abnormal cells, there is no way to determine cancer risk.

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Jackie Fox and Peggy MacDonald share a diagnosis. Both were told by doctors they had a cluster of abnormal cells in one of their breasts that may turn into cancer. Each reacted in vastly different ways to their bad news.

Fox, 57, diagnosed five years ago, had her breast removed. MacDonald, 49, got her news in March. She opted against surgery. Their decisions were highly personal, driven by unique circumstances and long-held feelings about cancer, the women said in separate interviews. Both believe they made the right decision.

“Some people can bash a woman’s choices,” said Fox, of Omaha, Neb. “They can tell you it isn’t likely that anything is going to happen, but they can’t tell you you’re not going to live in fear.”

That wasn’t the issue for MacDonald, of Portland, Ore. After her diagnosis for the same condition — ductal carcinoma in situ, or DCIS — McDonald felt as if her doctors put her on a “cancer conveyor belt” that moved too quickly: a mammogram, a biopsy, and then a breast surgeon discussing the intricacies of surgery.

How to slow down and, when necessary, stop that process is at the core of a report released this week by a National Cancer Institute panel of physicians.

The report has kicked off a debate on how best to make use of the surge of early warnings unleashed from powerful new tests for breast, prostate and other forms of cancer. The panel concluded that doctors who have now become highly adept at finding abnormal cells are far less skilled at assessing treatment options, pushing patients toward risky surgeries that may not be necessary.

“We are finding more and more lesions at earlier and earlier time points in the cancer diagnosis,” said Asad Umar, chief of the cancer institute’s gastrointestinal research group, by telephone. “This was our goal. But now we realize we have created a problem. Our strategy has been like carpet bombing. We need to clear up the confusion by coming up with some kind of strategy that will mitigate this over diagnosis.”

That runs counter to the fix-it-and-move-on mindset built into the U.S. medical system, even when that means costly, dangerous surgery or toxic chemotherapy. The challenge is changing that culture, the panel wrote in its commentary this week in the Journal of the American Medical Association.

What’s more, while science has developed increasingly sensitive tests to find abnormal cells, there still remains no clear way to determine when or if the cells will become cancerous, said Jennifer Litton, an oncologist at M.D. Anderson Cancer Center in Houston. That’s left doctors and patients in a no man’s land where fear can play as big a role as science.

“There is over-diagnosis and there certainly is over-treatment, but because we can’t predict in many cases what the outcome will be, we usually err on the side of what we think will have more benefits than risks,” Litton said. “It’s a hard conversation when you are talking about risks because no one has a crystal ball.”

Renaming pre-cancer conditions may help ease some of that fear, the panel suggested in in its commentary. It urged changing the name of Fox and MacDonald’s condition from DCIS to IDLE, an acronym for indolent lesions of epithelial origin that can develop in the breast and elsewhere. That would remove the fearful word “carcinoma” and offer a more precise medical definition, they wrote.

It’s a good first step, said MacDonald, whose mother was diagnosed with breast cancer in her 40s, and died from it 25 years later. Adjusting the name “would change the way people approach” the diagnosis, she said.

“You’re trained to panic when you get this thing that says cancer,” said MacDonald, the mother of three children ages 8 to 14 and a product manager at eBay. Re-educating the medical community on how it can better help women make decisions would be more valuable, she said.

MacDonald was diagnosed in March. Two doctors said her only options were to either remove the abnormal tissue and have radiation or undergo a mastectomy. Neither suggested simply monitoring the cells for change or using medicine to starve their growth.

“I was starting to have all these little red flags,” she said.

“My instinct was to question why go to such extremes for something that doesn’t sound so bad.”

While she was waiting for the results from a genetic test that would tell her if she was predisposed to cancer, her sister told her about Laura Esserman, a doctor at the Carol Franc Buck Breast Care Center at the University of California, San Francisco, and the lead author of the journal commentary by the National Cancer Institute panel.

Under Esserman’s care, MacDonald began taking drugs designed to slow the growth of the abnormal cells. They will be monitored via an MRI in about three months to decide on any further treatment.

More than 230,000 women are diagnosed with breast cancer in the U.S. each year, making it the most common tumor type among women, according to the American Cancer Society. Fewer than 40,000 die from it annually, with about one-third to half of those seen by doctors falling into the lowest risk category, Esserman said.

As with MacDonald, no one discussed watchful waiting with Fox, who recalled her doctor telling her that the condition wasn’t life-threatening, then quickly speaking of a mastectomy. Her growth was described to her as not “real cancer” or “stage zero” cancer.

“I was thinking, wait a minute, why are we talking about mastectomies?” recalled Fox, who works for an engineering company. “I kept thinking, why are we looking at this option?”

Her views changed after meeting with an oncologist and two unsuccessful attempts at removing abnormal cells. Her oncologist told her she had a 50 percent chance of developing cancer, based on the physical characteristics of the abnormality and density of her breast tissue.

She doesn’t regret her decision to have a mastectomy. She has since written a book on DCIS, “From Zero to Mastectomy,” and writes about cancer for a blog and on social media.

“You need to really talk to your doctor about your own risk factors, but people’s personal tolerance for risk comes into this too,” Fox said. “I personally didn’t choose a preventative bilateral mastectomy but some women do, and maybe some doctor wouldn’t agree with that. But you have to do what you feel is right, and what will help you sleep at night.”

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