In a ‘Rare Occurrence,’ a Doctor and a Patient Advocate Team Up to Conquer Desmoid Tumors

Get Permission

Doctor after doctor recommended different treatment options for Marlene Portnoy’s husband, Steve, after he was diagnosed with a desmoid tumor. Desmoid tumors are rare, and each doctor admitted uncertainty about treatment plans.

“Let me tell you, that’s a really scary thing when doctors can’t agree,” said Marlene.

Steve has since recovered, but Marlene has only begun to take on desmoid tumors. Frustrated by her family’s daunting experiences finding care, she began helping other patients with the rare malignancy. Through her advocacy work, Marlene met Mrinal Gounder, MD, a Conquer Cancer researcher and oncologist who treats patients with sarcoma.

Dr. Gounder’s research showed success treating desmoid tumors using sorafenib. 

After reading about his work, Marlene encouraged Dr. Gounder to lead a clinical study on his treatment. 

Since desmoid tumors are so rare, Dr. Gounder feared finding participants would be a challenge, but in less than 2 years—and with Marlene’s help—87 patients were enrolled in a phase III clinical study. The study was named one of the top 10 oncology breakthroughs of 2018. 

“My goal has always been to bring this drug to patients so this can be approved, and insurance companies will pay for this—not just in the United States, but worldwide,” said Dr. Gounder. “I can only hope this will move in the right direction.”

Partnership is key, said Dr. Gounder, for maintaining progress for all new treatments. 

“Whether it’s…collaboration between drug companies, academia, patient advocates… this can’t be done in a single institution.”

Listen to the full podcast episode on CONQUER.ORG, iTunes, or Google Play. 

 © 2020. American Society of Clinical Oncology. All rights reserved.