People who are living with metastatic breast cancer (MBC) face many challenges, and where the cancer has spread can greatly impact a person’s experience. Breast cancer that has spread (metastasized) to the brain is no exception.
In this next episode of Breast Cancer Breakthroughs, brought to you in collaboration with the American Brain Tumor Association, we hear from experts Dr. Priya Kumthekar and Dr. Jose Pablo Leone about what a diagnosis with brain metastasis means for breast cancer patients and how patients can proactively manage their risk of brain metastasis. Dr. Kumthekar is a neuro-oncologist at Northwestern Feinberg School of Medicine and Dr. Leone is a medical oncologist at Dana-Farber Cancer Institute.
Those living with brain metastasis not only face uncertainty about treatments available to treat their disease but also how current treatments impact their neurological abilities and overall quality of life. Today, researchers recognize that people with brain metastases need more progress, and advances are on the way to meet these needs.
An Unexpected Diagnosis
Like other types of MBC, brain metastasis begins when cells in the original tumor in the breast divide and grow, eventually breaking away from the tumor and invading surrounding tissues and blood vessels. Once these cancer cells invade the blood vessels, they can travel to other areas of the body, including distant organs like the brain.
For patient advocate Terlisa Sheppard, receiving an MBC diagnosis was a complete shock, especially when she was told that her breast cancer had metastasized to her bones, lungs and liver. A few months later, it had spread to her abdomen and spine, and a year after that, she learned it had also metastasized to her brain.
“At that time, I was floored,” Terlisa says. “To be honest, I didn’t know what to think at that point. I didn’t know much about breast cancer at all, let alone it metastasizing to various organs in my body.”
Identifying Symptoms and Warning Signs
Terlisa was originally diagnosed with stage 3 hormone receptor-positive/HER2-positive breast cancer. As a young Black woman, she already had some common risk factors for brain metastasis. Surprisingly, there were no symptoms for her brain metastasis beyond the pain she experienced from her initial diagnosis of MBC.
The symptoms and warning signs of brain metastasis are as unique and personal to each patient as their diagnosis. “Generalized brain symptoms like headache, nausea and vomiting sometimes happen when there’s higher pressure in the head from the brain mets,” Dr. Kumthekar explains. “Specific symptoms are basically location-dependent in the brain. So, if you have metastasis in the speech center, you can get speech issues.”
Today, there are no screening standards for brain metastasis. Based on her own experience, Terlisa believes that self-awareness and communication with your doctor are key if any unusual symptoms arise.
“I wish I was more aware in 2003 when I was first diagnosed with brain metastasis,” she reflects. “Be aware of any symptoms or ongoing issues that potentially cause a problem with your care, ask your medical team and make sure you get answers to all of your concerns.”
New Treatment Possibilities
Treatment for brain metastases has improved significantly over the past few decades, thanks to advances in research and more effective therapies that can cross the blood-brain barrier.
Dr. Leone shares some exciting new treatments in the pipeline that aim to improve outcomes for these patients, including the antibody-drug conjugate trastuzumab deruxtecan (Enhertu). The recent Destiny-Breast12 trial results show trastuzumab deruxtecan as a promising treatment for patients with brain metastasis. For patients like Terlisa, studies like the Destiny-Breast12 trial are a source of hope for a better quality of life and prolonged survival.
“In the past, a metastatic diagnosis was considered an automatic death sentence,” Terlisa says. “Now, through research, there’s hope that scientists will uncover promising research that can help us to live in a more chronic setting, instead of a terminal or deadly one.”
Embracing Every Moment
While Terlisa has been stable since her stereotactic radiosurgery in 2003, she says she stays informed about new developments in brain metastasis research through websites like mbcbrainmets.org. She is also a passionate advocate and supporter of the MBC community.
“I always tell others, ‘We’re in this together,’ and we truly are,” Terlisa says. “In our community, whatever we can do to put our arms around each other, we’re there for it.”
And while she says her initial diagnosis with brain metastasis made her feel “hopeless,” Terlisa also believes that this journey has taught her to live her very best life in every moment.
“To this day, I do not take life for granted. I’m grateful for everything and every moment that I’m given on this earth because I know it could be even worse. This is my new reality, and I’m just thankful.”
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