Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on November 8, 2024 in MyTumorID, Event Participant, Stories, Caregiving
Last month, Melissa F. and her partner Jess E. arrived bright and early to help set up for the Race for Hope Greater Philadelphia, an event that has become deeply personal to them both. For Melissa, it’s a way to give back to the community that has supported them since Jess’s brain tumor recurrence in 2020.
“I leave these events with tears in my eyes,” Melissa said. “Being surrounded by patients and caregivers who’ve become like family to us is inspiring. It’s really meaningful to have an event where we can come together and connect outside of a hospital or support group. We’re not just talking about treatments or what happened on our last scan. We’re there having fun.”
This year, alongside their team, Jess’s Brain Trainers, they raised $2,500, which included a portion matched by Melissa’s employer.
“We’re never going to be a top fundraising team, but we give with our team and our hearts,” Melissa explained. “We are very committed to the National Brain Tumor Society (NBTS). We fully believe that every dollar matters, and we’re proud to be part of something bigger, year after year.”
In 2013, doctors diagnosed Jess with low-grade oligodendroglioma based on the tumor classifications at the time. She underwent a craniotomy to remove the tumor. Eight years later, a recurrence was detected during a routine MRI, prompting Jess’s medical team to re-evaluate her original diagnosis. After re-testing the initial tumor tissue, they learned it was not oligodendroglioma.
“Had that tumor been removed today, it would have been classified as an astrocytoma based on the World Health Organization, which makes those tumor type classifications,” Melissa said. “It was truly never oligodendroglioma.”
This reclassification not only changed their understanding of Jess’s brain tumor but also highlighted the progress made in tumor identification and treatment over the years.
“At the time, her diagnosis was accurate based on the scientific knowledge we had in 2013,” Melissa explained. “The science simply wasn’t there yet. Had biomarker testing been available back then, Jess would’ve received a different diagnosis and likely undergone additional treatment. Maybe the tumor wouldn’t have recurred, or maybe it would’ve taken longer to come back.”
In 2020, Jess’s recurrence was diagnosed as a grade 3 anaplastic astrocytoma. She went through surgery, chemo, and radiation, continuing to work remotely until she was able to return in person as a special education administrator.
Their experience underscores the importance of undergoing biomarker testing to identify one’s tumor and determine the right treatment. NBTS’s MyTumorID campaign is committed to educating patients and their care partners about the value of biomarker testing and clinical trials so they can make informed decisions about their treatment.
“That’s why it’s so critical to know your tumor’s biomarkers,” Melissa said. “It ensures you know the best treatments available for your exact tumor.”
In 2023, Melissa and her family began noticing cognitive changes in her 68-year-old mother, Claire. As she became more forgetful and experienced other cognitive differences, Melissa advocated for an MRI.
The scan revealed 40-50 spots in her brain, including an inoperable tumor in her hypothalamus. A follow-up CT scan found a small mass in her lung, which was later diagnosed as non-small cell lung cancer that had metastasized to her brain. As a never-smoker, the news came as a shock to Claire and the entire family.
A neurosurgeon removed the largest tumor in her left frontal lobe, which improved her cognitive function. Leading up to the craniotomy, Jess became a source of knowledge and comfort for Claire.
“Jess was an immediate inspiration and role model for my mother as she walked her through the process of a craniotomy and what to expect,” Melissa said. “They are two peas in a pod now.”
Claire’s medical team conducted comprehensive biomarker testing to learn more about her lung cancer. They learned that her tumor had an EGFR mutation, allowing her to be treated with an EGFR inhibitor called osimertinib, which can cross the blood-brain barrier.
“Some of my mother’s brain metastases have shrunk, while others have disappeared completely,” Melissa said. “When I think about the scientific advances that made it possible for a drug to shrink brain mets, I can’t help but hope that similar breakthroughs can one day treat brain cancer.”
Claire’s experience with a targeted treatment reinforced Melissa’s commitment to raising awareness and advocating for research that could lead to better outcomes for people facing brain tumors.
“We’ve been told by doctors the hardest part of treating my mom’s cancer is that it spread to her brain,” Melissa said. “That’s why I’m so passionate about brain tumor research. Treatments for the brain are the most complex, and I’ll do whatever I can for other people’s moms facing the same devastating news.”
When Melissa met Jess, she had many years of clear scans behind her. But everything changed when Jess’s brain tumor recurred in 2020. Suddenly, Melissa found herself navigating uncharted territory, supporting Jess through her second craniotomy and subsequent treatments.
“After we got the news of her recurrence, I told Jess, ‘The good news is, I’m a Type A personality, and I’ve got this,’” Melissa recalls with a smile. “You focus on getting through treatment, and I’ll handle everything else. I’m a business analyst, so I turned my skill set into creating spreadsheets and charts for her meds, tracking symptoms, and organizing everything so she wouldn’t have to worry.”
Those skills proved invaluable again when Melissa’s mother was diagnosed with brain metastases. Without hesitation, she stepped up to care for Claire.
“I’ve already taken care of one post-craniotomy patient, so now I’m trained,” Melissa said. “I never thought that training would come in handy again. Caregiving is exhausting, but it’s not a burden when it’s for the people you love. You do whatever you can to bring them comfort.”
Melissa encourages other care partners to find connection through local support groups or NBTS’s new virtual Caregiver Support Conversations.
“The caregiver support group I attended at the time was a huge resource for me when Jess was going through treatment,” Melissa said. “It was helpful to know there are other people experiencing the same things.”
She also stresses the importance of delegating tasks, something she’s embraced in caring for her mother.
“You don’t have to do it all,” Melissa explained. “My mom feels most comfortable when I handle her personal care and manage her medication, but other family members pitch in with groceries, yard work, and meals. People want to help, so don’t be afraid to ask.”
Motivated to take action, Melissa and Jess traveled to Washington, D.C., during Brain Tumor Awareness Month to participate in Head to the Hill, NBTS’s signature advocacy event.
“As with most things in life, there’s nothing like face-to-face communication,” Melissa explained. “While I can share on social media and email my representatives, sitting down and meeting with people to share our story is what I believe makes the most impact.”
In May 2024, they met with their members of Congress to advocate for the Bolstering Research And Innovation Now (BRAIN) Act.
“The BRAIN Act was introduced in a bipartisan manner a couple of months after our Head to the Hill meetings,” Melissa said. “It made us feel like we had a real impact. It’s something we’re really excited to have been a part of.”
Advocacy gave them a way to turn their personal struggles into meaningful change for the brain tumor community.
“Robin Roberts once said, ‘Make your mess your message,’” Melissa reflected. “Jess is a perfect example of turning her challenges into a powerful message to spread awareness about brain cancer.”
For Melissa and Jess, advocacy didn’t end on Capitol Hill. They knew that spreading awareness and raising funds were just as critical.
“Awareness leads to funding,” Melissa said. “Funding leads to research, and research leads to advancements. No matter where I am, I’m ready to talk about it.”
As both a caregiver and an advocate, Melissa feels the weight of her loved ones’ diagnoses.
“I obviously care about everyone with a brain tumor, but I’m most impacted by my partner’s diagnosis and now my mom’s diagnosis with metastatic brain cancer,” Melissa said. “There’s no cure for brain cancer. Unfortunately, the likely scenario is not if but when Jess’ tumor returns. We hope that’s many, many years from now. If and when that time comes — and I hope it never does — I need that science, research, and funding to be there so that there are even better treatment options.”
Her hope lies in the fact that with more research and funding, new treatments will emerge in time for Jess and others like her.
“Brain cancer survival rates have remained stagnant while we’ve seen advancements in other types of cancer,” Melissa said. “Every day and every dollar matters to me. I keep hoping that today will be the day we see a breakthrough.”
The most recent WHO Classification of Tumours emphasizes the importance of biomarker testing in the diagnosis of brain tumors, yet nearly 70% of patients with brain tumors reported not understanding what biomarker testing is in a recent survey.
With the launch of MyTumorID earlier this year, the National Brain Tumor Society is committed to educating patients and their care partners about the value of biomarker testing and clinical trials, empowering patients to ID their tumor, know their options, and make informed decisions about their treatment.
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TAGGED WITH: brain cancer, biomarker testing, MyTumorID
