Are you living with brain or leptomeningeal metastasis from breast cancer? You are not alone.

NEW: Patient Blog

Jen Feinberg – Lessons From The Trenches

Living With MBC Brain Mets: Lessons in Hope and Purpose


In this personal story, Jen who is living with HER2+ metastatic breast cancer reflects on her journey from early stage disease to living with brain mets. Despite multiple progressions and seven lines of treatment, she continues to live a full life as a mom, wife, and friend. She shares how being open with her family, celebrating milestones, and connecting with the MBC community helps her navigate the uncertainty.


Fundraising for brain mets research helped her find purpose and regain a sense of control. Her community has raised $1.5 million to support new treatments and offer hope to others.


Despite the challenges, she continues to live fully and hopes her story offers encouragement to others.

EDUCATIONAL RESOURCES

NEW Webinar Recording Available

Leptomeningeal Spread and Breast Cancer

Did you know that as many as 5 -20% of people living with advanced disease may end up with leptomeningeal metastases? It is important for anyone who has or has had breast cancer, as well as their caregivers, to know the signs.



Hear from our experts about treatments and current clinical trials on breast cancer and LMD.

NEW Research Articles


Stay up-to-date with the latest findings. Explore these recent studies and see what they might mean for you and your care.


November 26, 2025

Patritumab deruxtecan (HER3-DXd) in patients with active brain metastases of breast cancer (TUXEDO-3): a multicentre, single-arm, phase 2 trial


Rupert Bartsch, Maximilian Marhold, Javier Garde-Noguera, María Gion, Manuel Ruiz-Borrego, Richard Greil, María Valero, Antonio Llombart-Cussac, Juan José García-Mosquera, Miriam Arumi, Javier Cortés, Marta Campolier, José Antonio Guerrero, Felipe Slebe, Elena Martínez-García, Carlos Jiménez-Cortegana, Marta Vaz-Batista, Felicitas Oberndorfer, Julia Furtner, Thorsten Fuereder, Anna Sophie Berghoff, Matthias Preusser


The TUXEDO-3 study tested a new treatment, HER3-DXd, in people with active brain metastases from breast cancer. In this small phase 2 trial, about 5 (24%) of 21 patients had an overall response, even though most participants had already received many prior treatments. Importantly, responses were seen across all breast cancer subtypes, including HER2- positive, HER2-low, and HER2- negative disease.


Patients' quality of life and neurological function stayed stable during treatment, which is especially important for people living with brain metastasis. Common side effects included neutropenia, fatigue, nausea, hair loss and diarrhea.


Although this was an early small study and more research is needed, the results are encouraging. HER3-DXd may become a future treatment option for people with brain metastases from breast cancer.

October 15, 2025

Brain imaging screening in metastatic breast cancer: Is it time to rethink clinical guidelines and practice?



Sarah Sammons, Nayan Lamba, Nancy U. Lin


Brain metastases in metastatic breast cancer (MBC) can significantly impact quality of life and survival. A growing body of research suggests that proactive brain imaging for higher risk patients, especially those with HER2-positive and triple negative breast cancer, may help detect brain metastases earlier, when more treatment options are available. While large randomized trials are still ongoing, experts argue that waiting for “perfect” data may delay meaningful care. Early detection could allow for less invasive treatments, better therapy planning, and prevention of serious neurologic symptoms. Most importantly, patients consistently say they want this information. Read the full article to learn why many researchers believe it’s time to rethink brain screening guidelines in MBC.

RESOURCES & SUPPORT SERVICES

Organizations that Provide Patient Support


Leptomeningeal Cancer Foundation



The Leptomeningeal Cancer Foundation (lmcancer.org) is a patient founded organization dedicated to offering hope, support, and education for those facing leptomeningeal cancer (LMC), a rare condition where cancer spreads to the brain and spinal cord membranes. The foundation also works to raise awareness and advance research for better diagnostics and treatments.

Private Facebook Group


Leptomeningial Disease (LMD) Community and Support


Founded by twin sisters Kyle and Briana Greenemeyer after Briana’s diagnosis, this group offers patients, families, and caregivers a safe space to share experiences, access information, and have honest conversations about treatment, side effects, and living with leptomeningeal disease.

Support Group

Breast Cancer Brain Mets (BCBM) Support Group

This is a Zoom Support Group meeting twice a month from 3:00-4:30 ET. The group is for women of all ages who have been diagnosed with brain metastases or leptomeningeal disease from breast cancer. Please join us to find hope, support and information from others living with this disease. 


Registration is required for new participants.

PATIENT CORNER

Would you like to Share your Story?

We want to hear from YOU!



We have two different opportunities for you to share your story: blog and video. Your patient voice and story matters. Sharing your story can provide hope and inspiration to others diagnosed or undergoing treatment.

Patient Blog


Would you like to write about your story? For questions or to submit your blog, please email mbcbrainmets@gmail.com for guidance.


No patient should have to go through MBC brain metastasis alone. Read some of our patient stories which are vulnerable, honest, and poignant.

Patient Video


If you are interested in creating a video, please email mbcbrainmets@gmail.com for guidance.


Take a look at the videos from patients living with brain metastasis who share their experiences of receiving a brain metastasis diagnosis, participating in a clinical trial, and undergoing treatments like a craniotomy, whole brain radiation, and others.