Doctors differ on treatments for DCIS, or ‘Stage 0’ breast cancer

Up to a quarter of American women newly diagnosed with breast cancer this year will face a once-rare condition that has spurred wide debate in the medical community and left many patients confused about treatment.

The ailment, affecting more than 60,000 newly diagnosed women in the country this year, according to the American Cancer Society, is often referred to as a “stage 0” or “pre-invasive” cancer.

The options for treatment are wide-ranging, including surgery - the current standard, followed up in many cases by radiation or hormone therapy - to a more hands-off approach that favors waiting to see if the disease advances.

The illness is known more commonly by its initials - DCIS - than by its formal name, ductal carcinoma in situ, referring to the milk ducts where the abnormal cells are found. They can multiply there and spread to other tissues in the breast or remain confined and thus noninvasive.

So far, there is no tried-and-true test to determine which DCIS lesions will progress to full-blown, invasive breast cancer and which will cause no further bother, doctors say.

A new study released last month, meanwhile, has fueled further debate surrounding the condition and its treatment. Among their findings, researchers concluded that there was no significant difference in survival among women who underwent surgery - removing the breast or a portion of the breast, or undergoing partial removal followed by radiation. Some physicians have found support in the findings for a less aggressive approach to treatment for some of their patients, based on their conditions.

Still, standard treatment is much the same as it would be for invasive breast cancer: cut it out and, in many cases, follow up with radiation or hormone therapy.

That’s just fine with patients like Toni Dettling of Rohnert Park, who had a double mastectomy last year after imaging turned up signs of DCIS in both breasts. She had begun to notice dimpling and retraction of her nipple on one side in the months leading up to the mammogram that prompted further testing and diagnosis.

“I don’t want to take a chance and have something come up again,” said Dettling, 53. “I right away opted for a double mastectomy.”

Ann Tremblay of Santa Rosa said she, too, embraced her surgeon’s recommendation for a proactive approach to her condition, though she understood it was noninvasive and not life-threatening as diagnosed. She trusted her medical team implicitly, she said, given the expertise that they possessed and she did not. After a lumpectomy in June to remove the abnormal lesion and surrounding breast tissue, she finished up a 30-day course of radiotherapy Friday.

“I have a 10-month-old granddaughter,” said Tremblay, 60. “I want to be around. For her.”

But the medical community is now increasingly facing questions about the best treatment approach to DCIS.

Many believe there is little choice but to act aggressively until more refined biological assessments are available to determine which DCIS lesions present actual risk of invasive disease.

Patients who have just learned of breast cell abnormalities typically aren’t in the mood to gamble on lesser treatment in any case, doctors said. The most common treatment is lumpectomy and radiation in cases where DCIS appears in a single location, doctors said. Mastectomy is more often used when there are multiple lesions or abnormal cells along the length of a duct.

Still, some in the medical field believe radiation is overused and that DCIS is generally over-treated and dealt with on a more urgent basis than is necessary, given that many cases will never progress and that women with DCIS have a high disease-free survival rate of 96 to 98 percent after treatment.

There may be opportunities to wait for a patient’s disease to “declare itself” before taking treatment action at all, depending on the degree of abnormality in the cells and rate of growth, according to Laura Esserman, director of the UC San Francisco Carol Franc Buck Breast Care Center, who is known for advocating a lighter touch in treating DCIS.

Emphasizing that approach over one that combines say, surgery, radiation and hormone therapy right off the bat, can be difficult, said Michael Alvarado, who works with Esserman as a breast cancer surgeon and associate professor of medicine at UCSF.

“We’ve been promoting the concept that DCIS is over-diagnosed, over-treated,” Alvarado said. “It causes a lot of worry with the name - ductal carcinoma - when it’s not even a true cancer.”

DCIS is usually asymptomatic, but often results in tiny calcium deposits in the breast tissue called micro-calcifications.

It is those white flecks detected through mammography that result in biopsies and most diagnoses of DCIS, accounting for a sevenfold surge in the number of cases in this country with the advent of routine screening mammograms in the early to mid-1980s, according to the National Institutes of Health. Longer lifespans contributed to the increase, the NIH said.

The rise in incidence leveled off after the 1990s, resulting in a rate of 32.5 cases per 100,000 women in 2004, compared to 1.87 per 100,000 in 1973-74, according to NIH. The highest incidence is in women age 50 and older.

Alvarado and others say that if DCIS is truly a precursor to invasive breast cancer, then the explosive rise in its detection and treatment over recent decades should have produced a significant drop in the number of invasive breast cancer cases around the country.

It has not.

But there has been a reduction over time in the rate of recurrence among those treated for DCIS, so women are doing better, said Charles Elboim, a breast surgeon with Annadel Medical Group in Santa Rosa.

Where lumpectomy is performed, studies show follow-up radiation reduces the rate of recurrence of DCIS or invasive cancer by more than 50 percent. Radiation also rids the tissue of undetected DCIS and even invasive cancer cells that may lurk nearby, Elboim said.

Without radiotherapy, there is a 30 percent rate of recurrence after 10 years, said Elizabeth Peralta, a Santa Rosa breast cancer surgeon with Sutter Medical Group of the Redwoods.

More than half of those recurrences, Elboim said, come back as invasive cancer.

“People want a black-and-white, short answer,” Elboim said, “and there ain’t one.”

Dwayla Crandall of Santa Rosa is a case in point.

Even after choosing to have radiation after her first encounter with DCIS in 2007, the worry about recurrence “almost felt like having a ticking time bomb on your chest that you never knew when or if it was going to go off,” she said.

But she wasn’t fully aware of how vastly opinions on DCIS differ until she thought she was having a recurrence and sought advice from a new oncologist, who decided to set her straight by informing her she “never had breast cancer” in the first place.

“I was very angry,” said Crandall, 54. It felt “very dismissive. It just totally invalidated the two surgeries and the radiation that I had been through previously.”

Now that she has had an actual recurrence, enduring a double mastectomy earlier this year, she reflects on her earlier treatment choices with a bit more perspective. Not only did she have persistent pain in her irradiated breast, but the tissue damage is likely to interfere with reconstructive surgery - a risk of which she had not been aware.

“At that time they told me that I didn’t have to have radiation, but if I wanted to, that was an option for me,” she said. “And I just felt at that time - I was only 46, I was young - I want to be as aggressive as I can be to make sure this doesn’t come back.”

Debate over treatment of DCIS resurfaced last month in mainstream news reports about a newly published medical article that offered several somewhat startling conclusions. Published in JAMA Oncology, the report was based on a 20-year study of more than 108,000 DCIS patients who had undergone treatment.

The researchers’ lead finding was that while the death rate was very low from DCIS, just over half of the DCIS patients who eventually died of breast cancer did so in the absence of an in-breast invasive recurrence - challenging the long-held view that the condition, when in the milk ducts, is not capable of metastasis.

The findings suggest that some cases of DCIS, at least, should be considered as “de facto breast cancers,” concluded the scientists, led by principal author Steven A. Narod of the Women’s College Hospital in Toronto.

The study found that patients who did develop invasive cancer in their breasts after DCIS treatment were 18.1 times more likely to die of breast cancer than those who did not develop the invasive cancer.

The research also found a markedly higher risk from DCIS among black women and, especially, among women who were under the age of 35 at diagnosis. The latter group was 17 times more likely to die of breast cancer than others in the first nine years.

But the conclusion that grabbed headlines was the researchers’ finding that there was no significant difference in survival among women who had either a mastectomy, a lumpectomy, or a lumpectomy followed by radiation.

The findings have roiled the debate about how much treatment is really necessary or effective for the tens of thousands of women in the United States who are diagnosed with DCIS every year. Doctors are confronting those questions in conversations with their patients.

Shafqat Akhtar, chief of medical oncology at Kaiser Permanente’s Santa Rosa Medical Center, is among those prepared to consider that a “watch and wait approach” may be appropriate for some patients.

“What I am suggesting is that rather than offering ‘standard of care’ to every patient with DCIS, treatment decisions be based on individual tumor and host factors,” he said.

Younger patients, black women and others deemed at higher risk because of the speed and complexity with which their DCIS cells multiply may warrant more aggressive treatment on a case-by-case basis than, say, post-menopausal patients with low-grade diagnoses, he and others said.

Gretchen Smith, a radiologist specializing in breast diagnosis and intervention with Sutter Medical Group of the Redwoods, said it “is a good thing for patients and patient care” to question each treatment choice and evaluate whether it can be tailored more individually. But until ongoing research produces reliable means through which a patient’s risk of invasive disease can be better measured, there is little room to deviate.

“We just don’t currently have a way of predicting which DCIS is going to progress,” she said.

Sebastopol resident Debbie Matteri, a 26-year survivor of DCIS, said she determined for herself what treatment to pursue, after getting three opinions when she was diagnosed at age 33, including one who said she could watch and wait to see what happened.

She had a lumpectomy but no radiation, deciding that it came with risks and side effects she was not prepared to endure.

“The diagnosis changed my life as a woman,” she said. “It was when I realized that I was the only one who could make the decision for my life.”

Local doctors all echo the findings of a panel of scientists assembled by the National Institutes of Health six years ago, which determined that the key to future treatment decisions was development of a ranking system for the risk posed by the variety of DCIS conditions.

That requires a closer, molecular look at DCIS lesions and a better understanding of which ones present the most danger, said Amy Shaw, medical director of the cancer survivorship program at Annadel Medical Group.

The proliferation of targeted therapies for other cancers suggests DCIS patients could some day have a wider range of treatment options to choose from, Shaw said.

“You can really fine tune the treatments for cancer,” she said. “That’s the future with DCIS, we hope.”

Staff Writer Martin Espinoza contributed to this report. You can reach Staff Writer Mary Callahan at 521-5249 or mary.callahan@pressdemocrat.com. On Twitter ?@MaryCallahanB.