What’s New in Breast Cancer Brain Metastasis Support

Knowledge. Hope. Community.

Across all breast cancer subtypes, approximately 10-15% of people living with metastatic breast cancer will develop brain metastasis. But until recently, people living with brain metastasis lacked a single central source for comprehensive information about diagnosis, treatments, management, and survivorship.

That’s why, in January 2022, MBCBrainMets.org was created by a committee of advocates living with metastatic breast cancer. With participation from numerous Alliance members, the project was supported by nonprofit Alliance member SHARE Cancer Support. Reviewed by a medical advisory board of world-renowned experts in the field of medical oncology, the site is the first one-stop resource hub for breast cancer patients living with brain metastasis or leptomeningeal disease.

Through this online resource hub, users can access information to understand brain metastasis or leptomeningeal disease—unpacking everything from basics of the diagnosis to treatment options for specific subtypes. They can also explore a directory of experts, get tips on seeking a second opinion, find hope and advice from fellow patients, and search for and enroll in clinical trials for breast cancer brain metastasis (BCBM).

Education, clinical trials and connection to community are key for improving outcomes and quality of life for people living with BCBM. MBCBrainMets.org provides a crucial hub for these conversations and resources—and, in the two years since its launch, the site has continued to add new information and offerings.

What’s New on MBCBrainMets.org

Curated by patients for patients, and vetted by a Medical Advisory Board, MBCBrainMets.org aims to continually add new support, resources and stories to its body of work. Explore the following offerings that have been added over the past year.

Support Group: A biweekly Zoom support group, co-facilitated by a social worker and a trained peer advocate, is for people of all ages who have been diagnosed with brain metastases or leptomeningeal disease from breast cancer. Hosted by SHARE Cancer Support, it offers hope, support, and information from others living with the disease. Register here.

Featured Clinical Trial Section: Building on general information about how to find and enroll in a clinical trial for BCBM, the site now has a Featured Clinical Trial page that offers users a chance to dig deeper into clinical trials led by our own Medical Advisory Board. The Bridget Trial, which is now being highlighted, aims to determine whether adding Tucatinib® to current therapy will help prolong the amount of time until another brain metastasis occurs compared to historical data. Read more.

New Patient Stories: A series of video interviews with patients offers an important firsthand perspective on what it’s like to live with breast cancer brain metastasis, including undergoing various treatments and enrolling in clinical trials. New videos from the past year include discussions with our patient advocate member Gwen Manchion, who describes moving through progression while maintaining hope; and Heather Gensler, who shared her experience with the laser interstitial thermal therapy (LITT) procedure. Explore all interviews.

Expert Corner: A series of interviews with leaders in the field also offers firsthand information on what to expect from surgery and treatment, emerging research on leptomeningeal disease or brain metastasis from breast cancer, and advice for optimizing outcomes and quality of life. New videos in the past year feature conversations with Dr. Paolo Tarantino, who has published over 50 papers on breast cancer research. His work focuses on the HER2 oncoprotein, the emerging HER2-low subgroup of breast tumors, and the development of novel antibody-drug conjugates to treat every subtype of breast cancer. Explore all interviews.

Webinars and Podcasts: Three new webinars were added last year to this curated selection of multimedia resources. One webinar, geared to patients and caregivers, offers a six-part video on navigating BCBM care. Earlier webinars explore ways to personalize and optimize multidisciplinary BCBM care; and evolving screening and care guidelines, with a focus on the state of HER2+ BCBM. Explore all resources.

Research Articles: More than a dozen new scientific articles on BCBM research were added to the MBCBrainMets.org library in 2023, offering insights on emerging treatments, coordinated care and more. Browse the articles.

Educate. Elevate. Share.

Living with a diagnosis of brain metastasis or leptomeningeal disease can be challenging. As a one-stop source for reliable information, MBCBrainMets.org now serves as an important resource that connects people to clarity and hope.

Lianne Kraemer, MBCA Independent Advocate Living with MBC & Active BCBM

“Being diagnosed with breast cancer brain metastasis is frightening,” said Lianne Kraemer, a patient advocate and founding committee member of MBCBrainMets.org. “When I faced my diagnosis, it was difficult to find someone who could guide me on what to expect. MBCBrainMets.org has made it much easier to get that information. And we’re excited to keep introducing new support services and update our community as the science evolves.”

As a coalition dedicated to serving the needs of the metastatic breast cancer community, we remain committed to filling the unmet needs of those living with BCBM. One easy way to get involved is simply spreading the word about the important information housed on MBCBrainMets.org.

Christine Benjamin, MBCA Executive Group Member

“Brain metastasis is a major concern within the breast cancer community,” said Christine Benjamin, VP of Patient Support and Education at SHARE Cancer Support and a member of the MBC Alliance’s Executive Group. “It’s important that we continue to raise awareness, educate patients and support research advances. We encourage everyone to share this web resource with your entire network–from patients and caregivers, to advocates and healthcare professionals.”

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