Six years ago, Mary Sullivan of Lido Beach underwent a double mastectomy after being diagnosed with a breast abnormality known as DCIS - ductal carcinoma in situ - the most aggressive treatment for a lump neither she nor her doctor could feel.
Classified as "stage 0 cancer" and caught on a routine mammogram, the condition turned out to be far more extensive after laboratory examination than what doctors initially suspected.
Today, she has no regrets.
"It's breast cancer. Even if don't you have a lump it's still malignant," said Sullivan, who volunteers with the Adelphi New York Statewide Breast Cancer Hotline and Support Program in Garden City. "At the time my children were 8, 10 and 13. So at that point I decided to go drastic because of my children."
DCIS is a complex diagnosis that inspires debate. In cases such as Sullivan's, the aggressive treatment was undertaken to save her life. But many other cases fall into a category of DCIS growths that may or may not evolve into full-blown breast cancer. Lacking the tools to discern the difference, doctors offer everyone surgery and radiation.
The number of DCIS diagnoses has increased dramatically since mammograms have become routine, setting off a furor in segments of the medical community. A flurry of policy papers have labeled the condition overdiagnosed and overtreated. Some health care advocates say DCIS should be downgraded from Stage 0 cancer to pre-cancer, worthy of being watched closely but not automatically treated.
But many cancer specialists are calling for more research before any mammography guidelines are changed. Without fully understanding DCIS, treating patients with anything less than current standards, they say, could compromise lives.
"We know that 20 to 30 percent of women with low-grade DCIS will progress to invasive breast cancer," said Susan Brown, a registered nurse and manager of health education for the advocacy organization Susan G. Komen for the Cure. She said treating all DCIS patients is a necessary strategy until medicine produces a way to differentiate cancers that will remain harmless for life from those that will spread.
"The problem is, with the technology we have today, we can't tell who falls into which category so we treat everyone the same way."
DCIS is among the smallest growths detected by mammography, and is noteworthy because it is fully contained in a milk duct. The Center for Medical Consumers in Manhattan has called for an end to routine mammographic screenings until doctors "fully understand the natural history of what they're looking for in women without symptoms."
Written by health care advocate Maryann Napoli, the organization's position paper calls into question the diagnosis and treatment of DCIS. "The term natural history is medical jargon for knowing what would happen if breast abnormalities that look cancerous under the microscope were left untreated," Napoli said.
The center's director, Arthur Levin, acknowledged it might be difficult to stop patients from seeking treatment once they receive a DCIS diagnosis because "when patients hear the word cancer they want it taken out."
The United States Preventive Services Task Force, the 15-member independent panel that issues guidelines on medical screenings and that last year called for a fewer mammograms for women in their 50s and none for those in their 40s, is also in the camp insisting DCIS is overdiagnosed and overtreated.
Dr. Elizabeth Whelan, director of the American Council on Health and Science in Manhattan, wrote earlier this year that "DCIS is non-invasive, and may lose its official status as 'cancer' in the future."
"DCIS is stage zero, which means it's non-invasive and may or may not become invasive," she said. She didn't see it as threatening - or even as full-fledged cancer.
But doctors who treat DCIS say simplistic views of DCIS fail to understand the condition's complexity.
"DCIS is stage zero cancer, that's the good news. Cure rates are close to 100 percent," said Dr. Brian O'Hea, director of the Carol M. Baldwin Breast Care Center at Stony Brook University. "But it is cancer, it's not pre-cancer. Generally speaking, DCIS poses a risk to the breast, but not a risk to life."
Dr. Karen Kostroff, chief of breast cancer surgery at North Shore-Long Island Jewish Health System, said there's a key concern: some forms of DCIS stay contained and never budge, while others break from a duct and become invasive. "The problem is that we don't know which cancers will remain in a duct," she said. "I feel it is more important for us to remain vigilant until research proves that it's OK to treat DCIS with anything less than what we're doing now."