Episode 56: What is DCIS and how is it treated?

In this episode, we interview Erika Bell, PhD from the Bay Area Cancer Connections (BACC) patient advocacy community about ductal carcinoma in situ (DCIS). Erika discusses the role of BACC in supporting cancer patients, the challenges of finding support during the pandemic, and the importance of patient advocacy organizations. She then dives into a detailed explanation of DCIS, its characteristics, and how it differs from invasive ductal carcinoma (IDC). We also delve into the decision-making process for treating DCIS, discussing options such as lumpectomy and mastectomy, and examine the role of sentinel lymph node biopsy in DCIS. This includes a detailed discussion on the findings of a study regarding sentinel lymph node biopsy in DCIS patients and its implications for treatment decisions. Above all, this conversation underscores the complexity of decision-making in cancer treatment and the need for personalized support and information for patients.

This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this study by Dr. Shiyi Wang.

About our guest

Erika Bell is the Director of Cancer Information and Education at Bay Area Cancer Connections (BACC), a community-based non-profit that supports people with breast or ovarian cancer. In this role she provides health education, personalized research, and medical decision-making support to clients. She has been with the organization for 14 years and is passionate about her work and the positive impact that it has on empowering people during a difficult time in their lives. She also serves as the Vice Chairperson for the California Breast Cancer Research Program Council. Erika earned an undergraduate degree in Biology from Cornell University and a doctorate degree in Molecular and Cellular Biology and Biochemistry from the University of California, San Francisco (UCSF).

Watch the video of our episode on YouTube

  • 7 minutes:

    “DCIS in and of itself is not actually life-threatening. Breast cancer that hasn't figured out how to break out of those ducts is gonna stay put, and then there's no fear that it's gonna spread somewhere else in the body, which is when breast cancer becomes life-threatening. In the past, we weren't very good at detecting ductal carcinoma inside you at all because you can't usually feel it. It tends to be diagnosed by being picked up on a screening mammogram. DCIS is kind of a problem of our newer generation. The problem is that not all DCIS will stay contained in that duct. A certain percentage of DCIS actually does change or mutate, and the cells figure out how to break through the walls of the duct and it does become invasive breast cancer. At that point, treatment is generally required, so there's some research going on trying to discover which DCIS will stay put and is low risk and which is likely to become invasive someday, but unfortunately, the field is not at that point yet."

  • 14 minutes:

    “There are a lot of people where maintaining as much breast tissue as possible is the most important thing to them in addition to still having feeling in their breast, so they opt for a lumpectomy. Other people really have a strong urge to just get everything out, “I don't ever want to have to deal with this again, please remove everything.” Those people also tend to be thinking about double mastectomies, which in the case of DCIS and no inherited genetic predisposition to breast cancer or no strong family history really is not medically indicated, but there are still women who make that choice, either driven by their anxiety or future screenings or symmetry that they want to achieve, etc.”

  • 35 minutes:

    “The program I direct at BACC is our personalized cancer information and education program. First, I'll say what we don't do is we don't provide any medical advice or second opinions or recommendations or referrals or anything like that. But what we do do is really educate people and hook them up to resources and information that can help them with this complex decision-making. As we've talked about sentinel lymph node biopsy, it's hard enough to get those words out and understand them. And if you can put yourself back to when you were diagnosed and hearing these things for the first time, it's a whole new language and you don't speak it. And yet you have to learn it very quickly and you're almost expected to become an expert within a matter of a few weeks. Intertwined with all of that are so many emotions that you're trying to process, likely some grief as well about being diagnosed, and denial. It's a very difficult time, so we're there to help with that.”

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