When a routine mammogram revealed she had cancer last December, Wendy Rosen wondered about treatment.
Diagnosed with ductal carcinoma in situ, she read up on the noninvasive cancer in which abnormal cells are found in the lining of the breast milk duct. While DCIS is rarely fatal and often never even causes harm, a small minority of untreated cases can grow and spread to other organs.
"There never really was much discussion of not following through with a procedure," said Rosen, a 73-year-old resident of Homeland.
But the thinking of doctors and patients on taking such aggressive steps to respond to DCIS is evolving as new information emerges about who's most at risk. Ductal carcinoma in situ is the most common breast cancer diagnosis, with more than 60,000 annual cases, and some call it stage zero cancer or even pre-cancer. Still, treatment is typically a lumpectomy to remove the cancerous tissue followed by radiation treatments, while mastectomies — removing the breast — are an option.
Now, research suggests that not everyone needs aggressive treatments because some people appear more at risk than others for DCIS to spread beyond the lining of the milk ducts. That could allow doctors to offer more nuanced advice, potentially leading to fewer unpleasant radiation treatments and possibly fewer surgeries for patients.
Few doctors are ready to put down the scalpel yet. Rosen's doctor recommended a lumpectomy after considering characteristics of her health and her disease. She had what she called a somewhat "arduous" biopsy where markers were placed so doctors could be assured to get it all.
She went home after the lumpectomy with Advil and instructions to come for another exam in six months. The scar has faded already, she said.
Others choose or need to take different courses. After being diagnosed with DCIS, comedian Wanda Sykes chose a double mastectomy in 2011 because she has a family history of breast cancer. Celebrity chef Sandra Lee chose the procedure this spring because she didn't want to go through weeks of radiation and still face the risk of breast cancer.
Actress Angelina Jolie popularized the double mastectomy as a response to breast cancer risk when she underwent the procedure preventively because she carried the BRCA1 gene, which significantly increases a person's risk.
But not everyone takes such an extreme steps. Tennis great Martina Navratilova underwent a lumpectomy and six weeks of radiation after she was diagnosed with DCIS in 2010 and has been cancer-free ever since.
On the advice of her doctors, Rosen isn't doing radiation treatments.
Other doctors also are skipping radiation in some older patients with small amounts of low-grade DCIS, which is graded low to high, based on how fast the abnormal cells are growing. Some are replacing it with hormone-based drugs when the abnormal cells contain certain receptors.
"I think a lot of us would agree we are overtreating DCIS," said Dr. Susan Kesmodel, director of breast surgery at the University of Maryland Medical Center. "Since we are diagnosing DCIS so much, we need a way to figure out who needs more aggressive treatment and who doesn't, and we're not quite there yet."
She said it would likely be years before there is a significant drop in surgeries for DCIS, after more studies.
"Once we have more data to support less invasive treatment," Kesmodel said, "we'll see a large shift."
Two new studies assessing patients with the disease already are contributing to the discussion about how far to go in treating some DCIS. A widely publicized paper in JAMA Oncology found younger and black women had a higher risk of dying from DCIS. It also found that death rates didn't decrease with the addition of radiation treatments to surgery.
The other recent paper in JAMA Surgery found a significant benefit to surgery in women with higher grades of DCIS, but not much difference for women with low-grade disease.
A smaller number of doctors believe the findings are evidence enough to stop surgeries in some women — particularly older white women with low-grade DCIS.
"Watchful waiting," in which patients are monitored for signs of trouble, may be a better track for them, wrote Dr. Laura Esserman, a researcher and breast cancer surgeon at the University of California San Francisco's Carol Franc Buck Breast Care Center, in a commentary in the same edition of JAMA Oncology as the first study.
Watchful waiting, also known as active surveillance, has become the protocol for many older man diagnosed with early stage prostate cancer, which typically is very slow growing, often goes undetected for years and poses little short-term risk. Doctors still aggressively treat fast-growing, late-stage prostate cancers.
Esserman said research shows removal of all or part of the breast through mastectomy or lumpectomy has not lessened the number of invasive breast cancer cases, unlike removing polyps in the colon to prevent cancer.
The recent study findings "fuel a growing concern that we should rethink our strategy for the detection and treatment of DCIS," she said.
But others say the papers don't promote such hands-off treatment, including Dr. David Euhus, Rosen's doctor and a professor of surgery and oncology and chief of breast surgery in the Johns Hopkins Medicine's division of surgical oncology.
While there are now clues as to which cancer may recur and spread and which may not ever cause trouble, doctors still can't be certain, Euhus said, so most DCIS needs to be treated.
Treating invasive cancers can be difficult, so even though DCIS is fatal less than 2 percent of the time, preventing recurrence remains important, he said.
Surgery cuts the risk and radiation cuts it further, he said. He agreed some women don't get much extra benefit from radiation treatment, and he tells them. Radiation also can cause swelling, firmness, soreness, fatigue and nausea. It also can't be used again if there is a recurrence.
Euhus said some women will want to avoid such therapies, while others will want a preventive double mastectomy even if it doesn't improve their chances much.
More definitive studies of who can be watched and not treated are ongoing, but for now, he said, most women should probably still have lumpectomies for limited DCIS and mastectomies for more extensive cases.
"The whole purpose of treating DCIS is to avoid invasive breast cancer," Euhus said. "We know if we do nothing for low-grade DCIS, a certain number get invasive cancer if we follow them for three decades. That's no fun. We have to figure out who might fall in that category."
Dr. Neil B. Friedman, director of the Hoffberger Breast Cancer Center at Mercy Medical Center, agreed that doctors should strive for the least amount of treatment necessary. For some patients, that is a form of watchful waiting. That could mean no further care after doctors remove all the abnormal cells during a biopsy used to diagnose DCIS.
"The trick is trying to figure out who needs more aggressive treatment and who doesn't," Friedman said. "It's never a black and white answer. It's always going to be a judgment call based on the risk of recurrence. It's not a survival issue."
Rosen remains free of DCIS and said she's glad to have been a good candidate for minimal treatment. But she looks forward to when more women can fearlessly decline treatment, including surgery.
"I was one of the lucky ones," she said. "I had an unusually positive experience with minimal discomfort. I know a lot of women experience a lot more."