Every month, a group of patients gathers with caregivers and experts to improve how they are living with metastatic breast cancer. The Metastatic Breast Cancer Empowerment Initiative is a growing community at Siteman Cancer Center that meets their specific needs.
The Metastatic Breast Cancer Empowerment Initiative started with the desire to do more for patients with the disease. Theresa’s Research co-founder Josh Newby together with Nusayba Bagegni, MD, a breast medical oncologist at WashU Medicine and nationally recognized breast cancer expert caring for patients at Siteman Cancer Center, along with other leaders, shared a vision and got to work. Dr. Bagegni explains, “Because of advancements in care, we’re now seeing late-onset side effects in patients who are living years after receiving treatment for brain metastases, for example. Everyone’s experience and journey is different. There are so many aspects to living with metastatic disease that I saw in clinical care — we all felt how important it was to further support our patients by providing supplemental holistic care far beyond providing the cancer treatment itself.”
Patients with Metastatic Breast Cancer Need Specific Support
Patients with MBC live in a new mental, physical, and emotional reality, one that is different from other breast cancer diagnoses.
“I’ve had many patients tell me that when they were diagnosed with early-stage breast cancer, they felt that there was a lot of support, socially and within the community,” Bagegni said. “But then when they developed a recurrence, they felt that they were more isolated, and they didn’t have those social support systems in the community. A patient put it this way to me: ‘It’s like I’m an orphan child,'” Dr. Bagegni recalled.
Metastatic breast cancer isn’t rare. Nearly 30% of those diagnosed with early-stage breast cancer will eventually see their disease progress to stage 4. Yet much of the awareness and support built around breast cancer wasn’t created with these patients in mind.
The Metastatic Breast Cancer Empowerment Initiative strives to end that.
Siteman-Designed Resources for MBC Patients
The MBC Empowerment Initiative gives a home to all experiences that come with the diagnosis through a vibrant webinar series and in-person support group meetings.
“There are a lot of support groups for women who have early-stage breast cancer, yet my patients tell me that the concerns discussed within those groups are very different from the concerns that they now have,” Bagegni said. “People at our webinar and our events have told us this. Before they felt like, ‘Shh, we don’t want to talk about those things. We don’t want to scare others.’”
In sharp contrast, the Initiative’s webinars and support group sessions invite the vulnerable, sometimes-scary, raw landscape.
What is the “Empowering MBC Voices” Webinar Series?
“Empowering MBC Voices” is a webinar series built to deepen specific understanding of a metastatic breast cancer diagnosis.
Dr. Bagegni explains, “Our goal is to build community through knowledge, through understanding, through togetherness, but also by supporting one another. A lot of what we are doing is based on things patients we’ve cared for have asked about, or things we think are particularly important or meaningful. The topics we focus on are ones that patients have brought up as important to them over the years.”
Each session opens with a short, expert-led presentation on a patient-requested topic tailored to lived experiences. An open town hall follows, where participants can direct questions to national experts. Presenters have included oncologists, researchers, psychologists and community partners, so the webinars offer education that clinical visits often don’t have time for.
What is the Living Empowered: MBC Support Group?
Living Empowered: MBC Support is an in-person support group for patients living with metastatic breast cancer. Sessions are intentional with time to enjoy a complimentary meal, participate in an activity, and hold a conversation led by facilitators trained specifically for oncology support groups.
By design, the support group is an intimate gathering. “Attendees are people who are going through that journey, talking to the group about their experience,” Dr. Bagegni said. “I think we are normalizing some of the concerns and the fears and anxieties those that are facing metastatic breast cancer can have in a very understanding space where others also are dedicated to MBC care or are going through it themselves.”
This is where the harder, more honest conversations happen. It’s also where community tends to deepen and foster relationships beyond formal meetings.
Support groups meet in person, with a virtual, hybrid option so that patients can participate even if they are feeling unwell or if travel is difficult with inclement weather. Unlike the webinar series, these sessions are always private and rarely recorded.
Living with MBC and Finding Support
Living with metastatic cancer opens up a new set of questions that clinical care alone doesn’t answer. Even with excellent treatment, patients are navigating a different kind of life where “getting back to pre-cancer normal” isn’t quite the goal, because normal has changed.
Being accepted is one of the most common needs patients with MBC describe. They have a chance at a longer life and want to live it as fully as they can, which means figuring out how a metastatic diagnosis fits alongside parenting, relationships, work, and everything else that makes up a life. The Empowerment Initiative exists to hold space for the ongoing, everyday work of living with it.
FAQ about MBC Empowerment Initiative
Yes! Patients and providers who aren’t getting or giving care at Siteman Cancer Center are welcome to join all MBC groups. Reaching people outside of Siteman is part of the Initiative’s mission.
Support groups and webinars happen in person, and attendees frequently travel from other parts of Missouri and Illinois to participate. But the opening portion of the webinar is always recorded. For people who can’t attend on that day, or are living beyond a driving distance, subscribing to the Siteman’s YouTube channel is another way to engage. Some participants have joined virtually from other states, then traveled to meet in person. All are welcome and encouraged to participate.
You can bookmark the MBC page on the Siteman Cancer Center website to see upcoming events or email [email protected].
If you were unable to attend a webinar in person, or joined Siteman’s MBC community, you can find the Empowering MBC Voices Webinar Series on YouTube. These are added the week following an event. Subscribe to Siteman’s channel and you will never miss an update.
For our webinar series, the last portion of the time together in person is not recorded. That means the town hall, where people are encouraged to ask questions and engage with our expert presenters, is not captured. The expert presentation is fully recorded and available on the Siteman Cancer Center website and YouTube channel. Support groups are rarely recorded and are hybrid to widen access so that regardless of how someone is feeling or the weather participating is possible. Those sessions, while online, are not recorded either.
Yes, Siteman welcomes second-opinion consultations for metastatic breast cancer, including access to clinical trials specific to MBC.
Yes, Siteman Cancer Center patients have the opportunity to participate in a variety of research studies, including more than 600 clinical trials designed to assess the effectiveness of innovative cancer treatments. Click here to find studies currently accepting new participants for metastatic breast cancer treatment.
Sources:
Theresa’s Research: https://www.theresasresearch.org/
Dying for Sex podcast: https://podcasts.apple.com/us/podcast/dying-for-sex/id1495392900
Journal of Health Economics and Outcomes Research: https://jheor.org/post/1696-breast-cancer-awareness-campaigns-too-often-overlook-those-with-metastatic-breast-cancer-here-s-how-they-can-do-better
Siteman’s Metastatic Breast Cancer Empowerment Initiative: https://siteman.washu.edu/metastatic-breast-cancer-empowerment-initiative/
Siteman’s Empowering MBC Voices: webinar series playlist: https://www.youtube.com/playlist?list=PLAvCzAIAfHmGLykjFK9xHwky9r8kzOMuh
Siteman’s Living Empowered MBC Support Group: https://siteman.washu.edu/patient-resources-and-supportive-services/support-groups/metastatic-breast-cancer-support-group/
NIH breast statistics: https://www.cancer.gov/types/breast/survival