From Surviving to Thriving with Brain Cancer

When Mark Cullen first learned that he had a brain tumor in 2019, he immediately reached out to his network to try and figure out his next steps. He connected with someone else living with brain cancer, who offered reassurances about what to expect and invited him to join the monthly San Francisco brain tumor support group meeting at UCSF happening in two days.

Barely a week out from his initial diagnosis and before he had even had surgery to remove his tumor, he was sharing in the group how he was trying to process the news.

“I got this immediate sense of community and support that was so impactful,” he said. “The enduring emotion I had flooding me was just gratitude.”

About a year later, when Naomi Hoffer, the Sheri Sobrato Brain Cancer Survivorship Program manager at UCSF, approached him about a new peer support program, he knew that this was his opportunity to give back.

The program supports people living with brain cancer through the complex emotional, psychological, and physical challenges they often face by facilitating connections between patients and peer volunteers, like Cullen, who have been trained on how to listen and offer support. 

When a brain cancer survivor requests peer support, Hoffer matches them with a peer volunteer who might have the same type of brain tumor or similar life experiences. She also meets with peer volunteers for a weekly group meeting that provides ongoing training on being an effective and empathetic listener.

Launched as a pilot project in 2020, when many were experiencing heightened social isolation and anxiety due to the COVID-19 pandemic, this unique, enduring model has helped foster an empowered community.

“We became the Thrivers, and that was emblematic of our community approach,” Cullen said. “We say, ‘You have a brain tumor. We understand how anxious and isolating that can feel. But that doesn't mean you're alone, or that you don't have lots of epic experiences ahead of you.”

What peer support provides

For Megan Gillis, who’s been living with brain cancer for 28 years, the Thriver group offers a different kind of support. Some meetings might be check-ins, where everyone rates how they feel across the social, physical, emotional, cognitive, and spiritual aspects of their well-being. Others might focus on active listening strategies or tools to help cope with anxiety and distress, like breathwork. They also often break out into smaller group discussions.

“It’s a support group without the structure of a support group,” she said. “It’s about continual learning as well as getting to know people in the group.”

Having been a Thriver for a few years now, it’s been important to feel like she doesn’t have to explain herself. People understand exactly what Gillis is talking about if she brings up a symptom she’s experiencing. They don’t give medical advice, but the Thrivers often ask each other about managing the side effects from brain tumor treatments or different antiepileptic drugs. 

“It’s just a hivemind of kindred souls,” she said. “Naomi makes it an extremely safe space to talk about everything — disease history, family life, how your marriage is going, if your kids are scared, if you’re incontinent, absolutely every little thing.”

It’s also very easy to make friends, she says, when everyone in the group understands the cycles of highs and lows that come with living with brain cancer. “We all realize we’re grieving something, and there’s no single path to get through it,” Gillis said. 

Cullen compares the experience to aging earlier in life, with end-of-life conversations and memory and balance issues coming up sooner. He tells others that adjusting to life after a brain tumor diagnosis and subsequent treatments requires being honest with yourself about a new baseline of physical and cognitive abilities.

“You’ve got to figure out what you're still good at, what you're not good at anymore, and then reconstruct your career and your life around what you're still good at,” he said. “And if you do that, you'll be happy.”

Most importantly, Gillis says that the Thrivers are a group she can turn to for unconditional support, especially since she’s no longer close to her family.

“It’s been a great comfort to be able to speak with people who are there for you if you’re having a full-fledged breakdown or if you just want to go have coffee,” she said. “It’s an alternate family.”

Most people, she adds, are overly kind and compassionate. Many Thrivers don’t have a caregiver, so they step in for each other with extra support, knowing to offer help before even being asked. 

For now, the Thriver group is available only to UCSF patients, but the peer support program is a model that both the survivorship program team and the Thrivers themselves are working to expand. Hoffer and her colleagues recently published a study detailing how they developed the peer support framework in Neuro-Oncology Practice. Two members of the Thriver group also used their training and experience as peer volunteers to launch the Young Adult Brain Tumor Support group, which is entirely peer-led and open to non-UCSF patients.

And Cullen hopes to work with brain tumor advocacy groups to see how to replicate the peer support framework at a national level.

“This is our support startup, and our currency is comfort,” he said.