In Memoriam: Gwen Manchion, a Champion for Those Living with Brain Mets
The MBC Alliance celebrates the life and work of our advocate member Gwen Manchion, who passed away on August 13, 2024. Gwen, who lived with metastatic breast cancer for three years, was a dedicated and passionate advocate who was integral to our Breast Cancer Brain Metastasis Initiative: the Marina Kaplan Project.
A wife, mother to two young girls, a runner, and a former physical therapist assistant and marketer, Gwen was diagnosed at age 44 with stage 3C invasive lobular carcinoma (ILC). Despite being monitored every six months due to her family history, Gwen’s cancer was not first detected through an MRI or mammogram – an issue common to ILC, which can be difficult to detect and manage through standard imaging and treatment protocols.
Following her treatment, Gwen pushed for a brain scan despite clear CT and bone scans. She had learned through research that ILC has a higher incidence of spreading to the brain. The request for a brain scan was initially denied, because it wasn’t standard of care. Gwen continued to advocate for a brain scan until her oncologist relented. That scan did validate her concerns and showed that her cancer had metastasized to the brain. Without her determination to advocate for herself and have the scan, she may have been thought to be in remission.
Understanding firsthand the need for earlier brain scans, and inspired by her contact with many Alliance members who empowered her to be an active participant in her own care, Gwen decided to become a patient advocate herself.
Joining the MBC Alliance in 2022, Gwen became a member of the subcommittee supporting the Breast Cancer Brain Metastasis Initiative, working on strategies to drive policy change that would increase access to clinical trials for patients with CNS metastases with the goal of progressing life expectancy and quality of life. She also became a patient contributor to the MBCBrainMets.org website –a one-stop resource hub for breast cancer patients living with brain metastasis or leptomeningeal disease – and shared her personal experiences to help guide others in navigating their own diagnosis.
“Gwen approached everything with an unmatched determination and strength of will. In both her advocacy for others and her own cancer treatment, she was focused on getting the best possible outcomes,” said Lianne Kraemer, a fellow patient advocate living with CNS metastasis and a founding member of the committee that created MBCBrainMets.org. “She was absolutely relentless.”
In addition to her work with the MBC Alliance, Gwen was a member of the GRASP Cancer network, a patient-led program that connects and empowers patients, clinicians and researchers to exchange ideas and learn from each other. And, as a regular attendee of the San Antonio Breast Cancer Conference, she served as a resource to connect others living with MBC with the latest news and tools.
“Gwen has sparked a movement to change the outcomes for patients living with CNS disease,” said Christine Hodgdon, a fellow patient advocate who co-leads the Alliance’s BCBM initiative and is also the co-founder of GRASP. “Her valuable insights helped us understand the truly complex nature of brain metastasis not only as a disease, but as the lived experience of the individual. These insights have underscored the urgent need for better research and care for patients.”
Gwen is survived by her loving family, including two daughters whom she welcomed in 2012 and 2018.
Gwen’s contributions and spirit are irreplaceable, and she will be deeply missed. As a collective, we are committed to honoring her work by continuing to push for more access to clinical trials for people living with brain metastases, with the goal of driving research advances that will extend and enhance quality of life.
