If there’s one piece of guidance we hope reaches the ears of newly diagnosed chordoma patients, it’s to find a medical team with deep expertise in this disease. For survivor Richard Goldberg, it made a huge difference.
“Which care team would treat my chordoma was the most important choice I made when I began this journey,” says Richard, who was diagnosed with lumbar chordoma in 2020. “It wasn’t a time to throw my hands up and say, ‘I’ve seen one doctor, and he’s the guy.’ That would have been a major mistake.”
Richard, a realtor in his early 70’s, had been experiencing back pain and noticed some lumps in that area, too. He got them checked out by his doctor, whom he’d been seeing regularly since being treated for lymphoma several decades ago. Richard’s physician said the lumps were harmless lipomas, but unfortunately the scan also revealed a lesion on the L1 region of his spine, which was later confirmed as chordoma via biopsy.
After his chordoma diagnosis, Richard met with providers at several centers before connecting with Dr. Daniel Sciubba, a neurosurgeon who was then at Johns Hopkins Medicine (now at Northwell Health). “When I spoke with Dr. Sciubba, we clicked,” Richard says. In addition to being impressed with Dr. Sciubba's longtime experience treating chordoma, Richard felt a strong connection with him thanks to his bedside manner — or in this case, screenside manner, since they met via teleconference due to the pandemic. The two bonded over their history as athletes: “Dr. Sciubba was a wrestler, and they require tenacity. They don’t give up easily,” says Richard. “I like that attitude.”
Soon after, surgery to remove the chordoma went smoothly. But the first stages of recovery were physically difficult and lonely; visitors weren’t permitted in the hospital per COVID-19 protocols. Richard recalls a bright moment during his hospital stay when, on Father’s Day, his son put together a video of many of Richard’s loved ones wishing him well.
A year later, Richard is doing well, able to tackle most of his normal responsibilities, like the great deal of walking and stair-climbing required in his profession. He’s also enjoying spending time with his grandchildren whenever he can, and is hopeful he’ll be able to golf again as his recovery continues.
Despite having endured two different cancers 30 years apart, Richard’s positive attitude has endured. “If I’m a cat, I’m burning up my lives. But I try not to dwell on the bad outcomes that could have come to pass. As luck would have it, I ended up with a good one.” His lymphoma diagnosis in the pre-internet days of the 1990’s has made him particularly grateful for the wealth of information available to cancer patients now. “Even for chordoma, which is as rare as they come, there’s a lot of support available now. It was great going online to access the Foundation’s resources, and hearing other patient stories,” he says.
Reflecting on his chordoma journey, what continues to stand out to Richard is the importance of taking his time to choose a care team to travel alongside him. ”You have to make the decision about what path you want to go down. If there’s one thing that’s vitally important, it’s to empower yourself,” he says. “I believe in empowering myself.”
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.