Imagine your annual screening shows a lump – not the big lump of an invasive breast cancer, but a less-than-pea-sized mass of ductal carcinoma in situ (DCIS), aka stage 0 breast cancer. Your doctor tells you that it’s harmless right now but has the potential to turn into something more serious down the line. Of course, your first thought is to get it out – further testing, surgery, radiation, targeted therapy…the whole nine yards. But treatment carries significant health risks. With all of this in mind, what are your next steps?
All of a sudden a simple answer looks a lot more complex. In fact, when we asked women on the 6th floor of Building 500 here at the University of Colorado Cancer Center what they would do in this situation, some thought they would choose to have the precancerous lump out as soon as possible, no matter what treatments they had to endure, others wanted to “watchfully wait” in hopes of avoiding unnecessary treatment, and others felt they didn’t know enough to have an opinion either way. Clearly the next steps after a stage 0 diagnosis are far from black and white.
DCIS: What you should know
According to the American Cancer Society about 60,000 cases of DCIS are diagnosed each year in the United States, accounting for about one out of every five new breast cancer diagnoses.
“In DCIS, the cancer cells arise from women’s ducts, but haven’t yet penetrated through the basement membrane of the duct to become invasive,” explains Wei Shin Wang, MD, a breast-imaging director at the CU Cancer Center.”
Currently the standard is to treat all patients diagnosed with DCIS regardless of their risk of developing invasive breast cancer, which tends to include “lumpectomy, radiation and chemo depending on the type of cancer cells found,” explains Wang.
However, a twenty-year study recently published in JAMA Oncology found that women diagnosed with DCIS had a 3.3 percent chance of dying of breast cancer. This is about the same as an average woman’s chance of dying of the disease without a DCIS diagnosis. In other words, diagnosis or not, treated or not, the risk of dying of breast cancer is unchanged.
“The problem is we do not yet have the tools to tell us which cancers are going to progress,” says Betsy Risendal, PhD, assistant research professor at the CU Cancer Center. Mammograms, which account for 80 percent of DCIS diagnoses, cannot determine if the abnormal cells in the ducts will actually turn into cancer.
“We need to focus on determining who is truly at high risk for developing breast cancer. We can do this by continuing to study mutations and oncogenes,” says Risendal. “If we can figure out which changes will turn into cancer it will help to determine who will benefit from treatment after a DCIS diagnosis.”
To treat or not to treat: How genetic testing may influence your decision
Treating stage 0 breast cancer may offer peace of mind, but treatment carries risk. Have you decided what you would do? Another factor may be your personal risk for breast cancer. Do you have a high prevalence of the disease in your family? Do you have genetic predisposition to the disease?
“For women who are diagnosed with DCIS at age 45 or younger, the National Comprehensive Cancer Network (NCCN) guidelines recommend that they seek genetic counseling,” explains Michelle Springer, Instructor and Certified Genetic Counselor at the CU Cancer Center.
“If a woman discovers that she does carry a mutation in a gene that increases the risk of developing cancer, such as BRCA1 or BRCA2, she may choose a more preventative or aggressive approach when it comes to her treatment,” says Springer. “On the other hand, having an uninformative (negative) result may influence her decision-making as well. We have found that it really depends on the woman as an individual.”
DCIS on the mind
So far we’ve been talking about your body: Does treating DCIS do more harm or more good in the long run? But your body isn’t the only part of you affected by a cancer diagnosis.
“A DCIS diagnosis can be very distressing because of the ‘what if’ mentality patients may have,” says Kristin Kilbourn, PhD, health psychologist at the University of Colorado at Denver. “Questions such as ‘what if it progresses to be invasive cancer?’ or ‘what if exposure to unnecessary radiation and chemotherapy affect me later on?’ may overwhelm the patient. Women should feel comfortable expressing their concerns with their doctor and finding a professional, such as a social worker or psychologist, who can help them manage their anxiety while deciding what their next course of action will be.”
In other words, a DCIS diagnosis can be distressing and distress is its own, very real factor to take into account when choosing to treat or not treat stage 0 breast cancer. If you have DCIS, can you live with it or will it keep you up at night? In the same situation, would it create more stress than it’s worth to introduce treatments like surgery, radiation and anti-estrogen therapy into your body? Irrespective of what’s “right” and “wrong” from a purely medical perspective, each woman will have to make her own decision, respecting how her choice will affect her mental wellbeing, with consultation from her doctor.
Mammograms and DCIS
With all this confusion and controversy, maybe a better question than what you would do if you were diagnosed with DCIS is whether you would want the chance of being diagnosed at all.
The standard way to screen for breast cancer in the United States is through mammography, as well as clinical breast exams. Mammograms are an X-ray of the breast used to identify and diagnose abnormal areas that may indicate the presence of cancer. In many cases, DCIS shows up as a dark area on the scans.
“In an ideal world mammograms would be able to distinguish between cancers that are harmful and cancers that are not going to progress into anything,” says Nicole Kounalakis, MD, surgical oncologist at the CU Cancer Center. “At this time they can only show us abnormalities in the breasts.”
Christie Aschwanden is the lead writer for science at FiveThirtyEight, a statistical analysis website, and a health columnist for the Washington Post. She has decided to opt out of mammograms.
“Studies have shown that mammograms are not as helpful as originally thought to be,” Aschwanden explains. “If mammography worked as promised, then every cancer found early by a mammogram would correspond to one less cancer found in an advanced stage. But that’s not what’s happened. The number of women with metastatic breast cancer has remained fairly flat, despite a huge increase in the number of early cancers being detected.”
In other words, there’s a paradox: If mammography catches dangerous cancers early, then we should see fewer dangerous cancers detected late. However, as rates of mammography and treatment for early cancers have gone up, we’ve seen no corresponding drop in the diagnosis of late-stage breast cancers. How can that be? One answer is that perhaps the early cancers found by mammography aren’t the ones that turn into dangerous, invasive disease. Maybe the early breast cancers we’re detecting and treating don’t require detection and treatment after all?
At the beginning of this article you were asked “what would you do with a stage 0 breast cancer diagnosis?” The answer, of course, is that you should do the right thing. But what is that right thing? Is it treating the cancer aggressively as soon as possible, or is it watchfully waiting to see if the early cancer becomes a relevant health problem? The real answer is that to the best of our knowledge, there is no universal answer. The best course of action comes down to age, genetics, family history, tumor type, and factors of mental wellbeing that make the “right thing” unique for each individual woman.