In 2022, just before his 35th birthday, Sam Horne was preparing for a major life change — becoming a father. Instead, he found himself in the hospital facing a frightening and unexpected diagnosis: desmoid tumor.

After developing a severe kidney infection, Sam spent three weeks in the hospital before learning he had desmoid-type fibromatosis in the retroperitoneum (the area behind the abdominal organs).

“I was scared, shaken, and torn up inside when I finally heard the diagnosis,” Sam said.

Today, the Fort Smith, Arkansas, native continues to navigate life with desmoid tumor while leaning on friends, neighbors, and his care team for support.

Learning About a Rare Condition

Like many people newly diagnosed with a rare condition, Sam first turned to the internet for answers. Wikipedia and MyDesmoidTumorTeam were the main resources that helped him learn more about desmoid tumor.

Finding clear information about a rare condition like desmoid tumor can be difficult. Sam also faced another challenge: His oncologist had no experience treating the condition.

“He’s the head oncologist of my hospital and hadn’t ever worked with desmoid-type fibromatosis before,” Sam said.

Sam’s experience is not unusual. There are few desmoid tumor specialists in the United States, and they’re often based at large medical centers.

Some people may need to travel for specialist care. In other cases, local oncologists can work with specialists to help guide treatment decisions.

Despite the uncertainty of working with an oncologist who wasn’t a specialist, Sam said he built trust with his doctor through open communication about his symptoms and treatment side effects.

“[My oncologist] has been receptive toward my needs regarding managing [side effects] of the chemotherapy pills,” he said.

‘Just Keep Talking About It’

Living with a rare condition has taught Sam the importance of self-advocacy. His advice to others with desmoid tumor who may feel unheard by medical professionals is simple: “Just keep talking about it.”

Although living with a chronic condition can feel isolating, Sam said support from the people around him has made a big difference. “Friends have been everything,” he shared. “My wonderful neighbors are letting me stay with them after my house fell into disrepair.”

Music, Technology, and Resilience

Outside of his health journey, Sam has remained connected to the passions that shape his identity, including music and animals. He also stays focused on his small business providing electronics repair and computer services.

Through serious health challenges and personal hardships, Sam continues to hold on to hope, and he encourages others to do the same: “Don’t give up — this isn’t the end.”

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumor, get advice, and find support from others who understand.

How have you learned more about living with a rare disease like desmoid tumor? Let others know in the comments below.