By Cynthia Marshall Schuman
When Los Altos resident Kay Carlyle was diagnosed with it, she turned to the Internet. Merry Astor called the Community Breast Health Project.
Both women are survivors of ductal carcinoma in situ, a noninvasive cancer that the American Cancer Society estimates was newly diagnosed in 41,000 women during 2000. Roughly one quarter of all breast cancer diagnoses are DCIS, making it a disease about which women need to know.
What is DCIS?
Just like the more common form of breast cancer (called infiltrating ductal carcinoma or IDC), DCIS is characterized by the plugging of the breast’s milk ducts with abnormal cells. If the abnormal cells become so numerous that they break through the ducts’ lining, the disease is considered invasive.
Clearly, DCIS and IDC are similar maladies. Still, there are several important differences between them: First, DCIS is in situ, meaning that the malignant cells remain in place; they don’t spread throughout the breast as invasive cancer does. The two also differ in the way they are detected and the rate at which they grow.
Whereas IDC can be detected either by physical examination or mammogram, DCIS rarely produces a lump and, as such, is found almost exclusively by mammogram.
“Now that mammography has become so commonplace, the majority of DCIS is detected mammographically rather than as a palpable mass, and it’s found because of microcalcifications; about 90 percent of DCIS calcifies,” said Dr. Fred Marcus, a medical oncologist at Sequoia Hospital, Redwood City, who treats women with DCIS.
A woman whose mammogram reveals suspicious microcalcifications will typically have her breast biopsied, which is a minimally invasive, outpatient surgical procedure. If the biopsy confirms the presence of malignant cells, then treatment is imperative. However, because there are a number of viable options, it isn’t always obvious which path should be followed. This is where DCIS offers an advantage over invasive breast cancer: DCIS grows more slowly, buying time for a woman to evaluate her options.
Treatment options
In Carlyle’s case, having DCIS rather than invasive cancer gave her two precious months to figure out her next move. Because her tumor turned out to be much larger than the mammogram had initially showed, she decided to follow her doctor’s recommendation to have a mastectomy.
But by doing some footwork, she also learned about a then-new treatment called a sentinel node biopsy that would verify diseased lymph nodes, so that the surgeon could remove those and leave alone the healthy nodes.
“I actually got to do a relatively new treatment, and the surgeon I worked with was experienced with doing the sentinel node biopsy. I think doing the research on the Internet and talking to other breast cancer survivors really helped with understanding the treatment options and risk and helped me to make an informed decision,” Carlyle said.
Mastectomy is not the only answer for DCIS patients. Another treatment option is lumpectomy, a procedure in which the tumor is removed, along with some surrounding so-called healthy tissue (called a margin).
Lumpectomy may or may not be accompanied by radiation to kill malignant cells not caught by the lumpectomy. Chemotherapy is not used for DCIS, but the anti-estrogen drug Tamoxifen is sometimes prescribed.
Which treatment or combination of treatments to use is a matter of some controversy. “If somebody has microcalcifications that pepper their breast and a biopsy is done and everywhere you biopsy there’s DCIS, by definition, you can’t clear the margins and that woman’s a candidate for a mastectomy - and still potentially curable,” Marcus said.
For small tumors, though, most believe that a mastectomy is overkill, and substantial data now support a combination of lumpectomy and radiation as a better choice. Or, if the surgeon takes wide margins, then the chance of leaving any malignant cells behind is negligible, and there are some data to suggest that radiation may not be necessary.
“It depends on the patient; what’s appropriate for some women may not be for others,” said Dr. Edmund Tai, a medical oncologist at El Camino Hospital.
Resources
“When women understand that there are options, and there’s data that supports those options, they start to think about ways to deal with this and ways that are less invasive, the ways that are less mutilating and require less medical intervention,” Marcus said.
Fortunately, learning about the options is an easy thing to do, especially in the Bay Area. When Astor was diagnosed with DCIS in 1999, she consulted the Community Breast Health Project in Palo Alto.
“I got most of my information at the Community Breast Health Project. They have an amazing library full of material, and they also have an open house one night each week, where doctors come and speak about a variety of subjects,” Astor said. She ended up opting to work with the physician she heard the night she visited.
Using her training as a marriage and family therapist, Astor now volunteers for the CBHP, leading a support group at her office in Los Altos for women grappling with DCIS.
Carlyle turned to the Internet. “I joined the breast cancer Internet list, and they actually have local lunches and meetings, so I got to meet with local survivors. It was very helpful to talk with breast cancer survivors who had recently gone through the surgeries and could give you the pros and cons of their surgeries and their outcomes,” she said.
For more information on the CBHP or DCIS support group, call 326-6686. To learn about the Breast Cancer Mailing List, logon to www.bclist.org.
