In addition, the critics say, it is not entirely clear that all low-grade DCIS is low risk. Czerniecki points out that some low-grade cases contain factors that correlate with aggressive cancer, such as scoring positive for the HER2 protein (although this situation is much more common in high-grade cases). Also, many experts feel that to examine all the affected tissue, a lumpectomy—not just the samples that come with a biopsy—is necessary. “I argue that we need to treat DCIS at a minimum with lumpectomy to make sure there’s no invasive cancer present,” says Tuttle. Lumpectomies aren’t complicated procedures. “This surgery is far less deforming than a mastectomy,” says Eric P. Winer, MD, professor of medicine at Harvard Medical School and chief scientific adviser for Susan G. Komen for the Cure, a large breast-cancer research and advocacy organization. Still, a lumpectomy can have side effects, notes Esserman. These might include scarring, a loss of sensation around the area that was excised and in rare cases an accumulation of fluid in the empty space created by the surgery.
A GAME PLAN FOR PATIENTS
If you receive a diagnosis of DCIS, don’t feel you need to make a quick decision on treatment. “By the time DCIS appears on a mammogram, it’s been there for several years. If you spend two weeks or three weeks or a month to find the right people to take care of it, that’s not going to make any difference in the outcome,” says Shahla Masood, MD, head of pathology at the University of Florida College of Medicine in Jacksonville.
So time isn’t the enemy. There’s time to take your slides to another pathologist and get a second opinion—a good idea, since it’s estimated that 17 percent of DCIS biopsies may be misread by pathologists. You have time to find out the grade of your condition; if it’s high, then you’re not in the gray area. And you have time to consider what next steps are best for you. “There’s no reason to rush into surgery,” says Masood. “Too often a woman gets a DCIS diagnosis on Friday, and on Monday morning she’s in the operating room.”
“I held out for two years after my DCIS diagnosis before having surgery,” says Diane Valentine, an elegant 63-year-old San Francisco Bay Area resident whose bearing reflects her nearly 24 years of teaching yoga. “I consulted a second doctor, and she told me the survival rate for DCIS was over 85 percent, so I decided to take those odds.” Over the next two years, her progress was tracked with mammograms at six-month intervals, and there was no change in the lesion. “But the pressure was immense,” she says. “From my doctors, who warned it would be OK to wait three months, maybe six, but no more. From the students at my yoga school. From other breast-cancer patients. Everyone kept warning that I needed to get the cancer out. Now!” Ultimately, she had a lumpectomy, no radiation.
Today the standard of care for DCIS is to surgically remove every lesion, and that’s going to be the most common recommendation for women faced with this diagnosis. “But in the end, the decision about how you treat a cancer will always remain one patient, one doctor, one room,” Patt says. Doctor and patient weigh the risk of invasive cancer (based on whether the patient has had a lot of biopsies, has a family history of breast cancer or is a BRCA-gene carrier) against the risk of surgery. What does the pathology report say? Does it explain the abnormalities found in the mammogram? Then the doctor and patient decide on a course of treatment.
The whole process could be less anxiety producing if the medical world dropped the word carcinoma in relation to DCIS. “Once you say the word cancer, the patient hears nothing else,” Patt says. “It produces a visceral reaction that demands, ‘Make it go away!’ ” Masood has suggested using the term borderline breast disease for cases of atypical ductal hyperplasia and low-grade DCIS. Esserman proposes changing DCIS to IDLE, short for InDolent Lesions of Epithelial origin (indolent is medical jargon for inactive; epithelial refers to the tissue lining an organ).