Coping with the Uncertainty of DCIS

Given the mixed messages involved, it's not surprising that women with ductal carcinoma in situ can become anxious and sometimes unduly alarmed by the diagnosis.

Given the mixed messages involved, it’s not surprising that women with ductal carcinoma in situ (DCIS) can become anxious and sometimes unduly alarmed, says Ann Partridge, a medical oncologist at Boston’s Dana-Farber Cancer Institute.

They’re told the good news, at least where cancer is involved: that DCIS is confined to the milk ducts of the breast and thus doesn’t pose an imminent life-threatening risk. Then they’re bombarded with a battery of treatment options and decisions, starting with surgery and potentially followed by weeks of radiation and years of tamoxifen.

["The DCIS Dilemma"]

“At least emotionally, they feel just like an average patient with invasive breast cancer,” Partridge says. “They feel like they were walking along and had the carpet ripped out from under their feet in terms of their trust in their body.”

The result: confusion and an inflated risk perception. In one 2008 study that Partridge helped author, 28 percent of recently diagnosed women described their risk of the noninvasive cancer spreading, not only within the breast itself but also to other parts of the body, as moderate or higher. The likelihood of such a metastasis occurring, according to studies, is less than 1 percent. Of the 487 women surveyed, 10 percent also reported substantial anxiety.

Partridge credits a mix of potential factors in explaining the perception-risk disconnect, including the high-profile scrutiny on breast cancer in today’s media and the failure of some doctors to devote sufficient time to explaining the relatively low-risk diagnosis. Moreover, doctors might not recognize these women’s psychological needs, as they care for patients with brain metastases and other life-threatening malignancies.

But, Partridge stresses, the emotional whiplash felt by patients with DCIS is very real and justified. “It still stinks to lose a piece of your breast or your whole breast, even if you’re not going to die of something,” she says.

Could the name itself play a role in DCIS anxiety, with the word “cancer” embedded within? In a 2013 commentary published in the Journal of the American Medical Association, a working group organized by the National Cancer Institute has argued that language does matter, going so far as to suggest removing the word “carcinoma” or “cancer” from the names of pre-malignant conditions.

A name change, though, might dissuade women from pursuing treatment that could reduce the likelihood that one day the lesion might morph into invasive breast cancer, says Thomas Julian, a surgeon at Allegheny Cancer Center. “By eliminating that part of the name, you’ve really made it sound like, `Oh, this diagnosis is a big nothing,’ ” he says. “Patients need to discuss this diagnosis (DCIS) with their oncology physicians to determine their best treatment.”

Meanwhile, patients with DCIS describe feeling a bit isolated amid the pink-ribbon swirl of the breast cancer community, says Sandie Walters, who has been treated for DCIS and is the co-founder of the blog DCIS Redefined. Walters, who has mentored patients, says some women with DCIS question whether they qualify as breast cancer survivors. “It’s stage 0 cancer, but then it’s not like what people traditionally think of with cancers,” she says.

["Survivor Defined"]

For that reason, a traditional cancer support group, where another woman sitting nearby might be coping with hair loss and longer odds, might not be the best place for patients with DCIS to start, Partridge says. “It’s like the skinny person going to Weight Watchers who wants to lose five pounds.”

Instead, she recommends that women with DCIS read up on the noninvasive cancer, hopefully allaying their fears with facts. If their anxiety is eroding their quality of life, they should consider talking with a mental health professional. Or they could ask their cancer center to match them up with someone who also has stage 0 cancer, with whom they can speak more freely.

Above all, the fear and angst shouldn’t be ignored or discounted, Partridge says. “I think anxiety can lead people to both feel badly in the moment, as well as to make decisions that might have repercussions for their health and wellbeing in the future.”