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, who received her diagnosis five years ago, decided to have her breast surgically 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 women believe they made the right decision.
“Some people can bash a woman’s choices,” Fox said in a telephone interview. “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 MacDonald’s issue. 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, in a telephone interview. 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, who lives in Portland, Oregon. Her 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 in a telephone interview.
“You’re trained to panic when you get this thing that says cancer,” said MacDonald, the mother of three children ages 14 to 8 who works as a product manager at EBay Inc.
Re-educating the medical community on how it can better help women make decisions would be more valuable, she said.
MacDonald was diagnosed with ductal carcinoma in situ in March. Two doctors said her only options were either remove the abnormal tissue and have radiation, or undergo a mastectomy. Neither suggested the less severe strategy of 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, as well as 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. The plan now is to monitor the growth of the cells using an MRI in about three months to determine if further treatment is needed.
Having a one-shot mastectomy may have been the quick and simple solution, MacDonald said, though it wasn’t a step she was ready to take. She said she’s open to considering more aggressive treatment after being able to consider all possible options.
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.
Fox, who lives in Omaha, Nebraska and works for an engineering company, also struggled with her decision, she said.
As with MacDonald, no one discussed watchful waiting with her. Her diagnosis came five years ago, before the debate on how aggressively to treat her condition.
She recalls her doctor telling her that her growth wasn’t life threatening then quickly turning to talk 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?” Fox recalls. “I kept thinking, ‘why are we looking at this option?’”
After meeting with an oncologist and two unsuccessful attempts at removing abnormal cells, her views changed. Her oncologist told her that based on the physical characteristics of her abnormality and density of her breast tissue, she had a 50 percent chance at developing breast cancer.
After several weeks of considering her options, she chose to have a mastectomy and hasn’t regretted her decision. Since then she’s written a book on DCIS called 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.”
To contact the reporters on this story: Michelle Fay Cortez in Minneapolis at firstname.lastname@example.org; Shannon Pettypiece in New York at email@example.com
To contact the editor responsible for this story: Reg Gale at firstname.lastname@example.org