Before the 1980s, doctors rarely diagnosed breast cancer when it was still too small to be felt.
But in recent decades, with widespread use of mammography, detection of these abnormal breast cells, called ductal carcinoma in situ, or DCIS, has increased dramatically. And when it’s found, it is typically treated.
As many as 60,000 U.S. women annually are diagnosed with DCIS, and most get lumpectomies, sometimes followed by radiation. Some have mastectomies, or some even choose to have double mastectomies to remove the healthy breasts as a preventive measure.
But new research is fueling a debate over whether some DCIS patients are getting unnecessary treatment for a condition that may never have developed into life-threatening cancer.
More research is needed to help doctors understand which DCIS lesions will become invasive breast cancer and which won’t. Until then, the idea of not treating the cancer – and instead, observing it with more frequent mammograms – is too risky for most doctors to recommend. And it’s emotionally difficult for patients.
Amy Taylor of Charlotte said she rejected that option when she was diagnosed with DCIS in September 2013. She couldn’t stand the uncertainty and stress of getting a mammogram every three months. “I didn’t want to be … freaking out and worried about it.”
Two surgeons recommended lumpectomy, but she decided to have a double mastectomy, to remove her healthy breast as well as the one with cancer. “It was the toughest decision I had to make in my life,” said Taylor, 43, the mother of two young children. “But I won’t have to worry about breast cancer again.”
Deciding what to do after a DCIS diagnosis is a question facing many women and doctors today.
For years, doctors have known that true DCIS is rarely life-threatening. But about one-third of patients with DCIS who get no treatment will go on to develop invasive cancer, which carries a greater risk. And about 20 percent of patients with a DCIS diagnosis will be found to have invasive cancer instead when they undergo surgery for treatment.
A new study, published in August in the journal JAMA Oncology, raised more questions about overtreatment. It found essentially no difference in the low death rate from breast cancer between women who had lumpectomies and those who had mastectomies.
An accompanying editorial said the finding fuels “a growing concern that we should rethink our strategy” for DCIS treatment.
“For many years, I’ve thought we were overtreating DCIS. This is just confirming what I’ve been believing all along,” said Dr. Shelley Hwang, chief of breast surgery at Duke Cancer Institute in Durham, who was not involved in the August study.
“There are many kinds of DCIS. And we’re starting to get some clues about what kind of DCIS can be safely observed rather than treated,” Hwang said. “The people who pay the price are not the physicians. It’s the patients.”
Lumpectomy is standard
Charlotte breast cancer specialists interviewed by the Observer said they’re not changing their standard treatment for DCIS because of any single study, but they’re paying attention to the debate.
“We need to be judicious,” said Dr. Hadley Sharp, a radiation oncologist at Levine Cancer Institute at Carolinas HealthCare System. “It would be wrong to say that every woman with DCIS needs treatment, and it would be wrong to say that no women with DCIS need treatment. … The key is to differentiate which is which.”
Until doctors can better distinguish which cases of DCIS will progress to invasive cancer and which ones won’t, they’ll likely continue to recommend the current standard of care, which is lumpectomy, a less invasive surgery than mastectomy, using small incisions to remove abnormal cells without removing the breast. Lumpectomy can be followed by radiation, depending on the characteristics of the lesions and the age of the patient.
The August study supported “what many feel, that a mastectomy is often an overtreatment for DCIS,” Sharp said. But some patients still choose mastectomy, the more radical surgery that involves removing one or both breasts.
Dr. Peter Turk, a breast cancer surgeon with Carolina Surgical of Charlotte, said he’s recently observed more young women choosing mastectomies. “They call it the ‘Angelina Jolie effect,’ ” Turk said, referring to the movie star who chose to have a double mastectomy in 2013. “They definitely have a higher risk of getting another breast cancer than older patients. They don’t want to be left at risk.”
The other option is “watchful waiting,” not treating, but having more frequent mammograms to monitor change.
Dr. James Boyd, of Oncology Specialists of Charlotte, said he’d be reluctant to stop doing lumpectomies for DCIS patients because about 20 percent turn out to be “harboring more aggressive disease” that went undetected during biopsy. But he said DCIS is slow-growing, so there’s no need to rush a treatment decision.
Levine’s Sharp agreed. “You really need to do the lumpectomy to even be sure that it is only DCIS.” If the surgeon finds invasive cancer, outside the milk ducts, that “greatly changes the prognosis,” Sharp said. Additional treatment might be recommended, including more surgery and chemotherapy.
Doctors make judgments about whether early stage cancer is low- or high-risk based on various factors, including the age of the patient at diagnosis and characteristics of the lesions. “We do have tools. We just want to continue to refine them,” Sharp said. “This is a patient-by-patient decision we’re making.”
Comparison study needed
What’s needed, doctors agree, is a prospective randomized study that compares patients with DCIS who got treatment with patients who didn’t. But many doctors feel that randomly choosing women to voluntarily get no treatment would be a difficult decision to make.
“Our society is so geared to just treating, treating, treating, it’s really hard to design trials like that,” said Duke’s Hwang. “It’s a problem to always retreat back to doing what’s most aggressive because we don’t know what would happen if we didn’t.”
Hwang recalled the 1970s, when mastectomies were the standard of care for most breast cancer, but some women resisted such drastic surgery. It took randomized trials to show that, for some patients, it was sufficient to perform lumpectomies. But doctors who led those studies were “absolutely castigated,” she said.
She has proposed studies at Duke to compare treatment and nontreatment of DCIS and believes untreated patients could be monitored closely and safely with frequent mammograms. “If you have a woman with early stage invasive cancer and you catch it early, their prognosis is almost as good as if they have DCIS,” Hwang said.
‘Personal decision’ for patient
When Mary Funderburk, 55, of Mint Hill, learned she had early stage breast cancer in April, her first thought was, “Let’s cut ’em off and move on.”
She knew a lot about breast cancer because of her family history. Her mother developed breast cancer at 21 and was treated for cervical cancer later before dying at 70, from complications of chemotherapy and other cancer drug treatments.
“I understand what DCIS is, but it still has that “C” word in it that nobody wants to face,” she said. “For me it was a very personal decision. I don’t want to go through this again in 10 years.”
Funderburk had a lumpectomy and radiation. “Watchful waiting” would have been too stressful, she said. “I couldn’t take that. I’d be in a funny farm somewhere.”
October is Breast Cancer Awareness Month, and we’re joining in the cause. Today, you’ll find most of our pages are tinted pink to raise your awareness of this disease. We hope you’ll take time to reach out to your friends and family who are managing this illness and remember those who have dealt with a loss. Our thanks to Charlotte Radiology, our co-sponsor.
Ann Caulkins, publisher
Breast cancer awareness events
▪ Friday and Saturday, “Menopause the Musical,” Blumenthal Performing Arts Center, McGlohon Theater at Spirit Square, 345 N. College St., 8 p.m. Friday, and 2 p.m. and 8 p.m. Saturday. Tickets on sale at Blumenthal Performing Arts Center Box Office, carolinatix.org, or call 704-372-1000.
▪ Oct. 17, American Cancer Society Making Strides, featuring a 3- and 5-mile walk; starting at 9 a.m. at NASCAR Hall of Fame, 400 E. Martin Luther King Jr. Blvd.
▪ Oct. 24, Junior League of Charlotte Wearhouse, shoppers get 20 percent off their purchases, with proceeds benefiting breast cancer.
▪ Friday’s Observe the Pink celebration at the Charlotte Observer has been canceled.
Breast cancer resources
▪ American Cancer Society: www.cancer.org/cancer/breastcancer/
▪ Susan G. Komen for the Cure: ww5.komen.org/
▪ National Cancer Institute: www.cancer.gov/types/breast