Rahway cancer patient helps launch national foundation for rare tumor

RAHWAY — Steve Ducos of Rahway is a person who likes to be out and about. For fun, he enjoys being outdoors, going to the mountains in New Jersey, nature activities, traveling to see solar eclipses and exploring natural wonders.

His journey went from being able to do a lot of things to all the challenges that come with having a rare disease. Ducos was diagnosed with a solitary fibrous tumor (SFT), an ultra-rare sarcoma. It’s an unpredictable disease diagnosed in fewer than one in a million people worldwide, with an estimated 300 to 400 new cases in the United States each year.

For many cancer patients, five years without recurrence is considered a major milestone. For people living with SFT, the cancer can return 10, 20 or even 30 years after initial treatment.

July was Sarcoma Awareness Month. Ducos had helped launch the Solitary Fibrous Tumor Foundation (SFTF), the first patient- and supporter-led nonprofit dedicated entirely to this one-in-a-million tumor.

Ducos was one of nearly 40 percent of patients who were misdiagnosed during their medical journey. “Patients have to become experts in their own disease,” he said. “To experience it [SFT] as a patient, your mind is blown. Simple things are challenges. It elevates your anxiety. Makes you feel powerless.”

He said his journey was mostly asymptomatic until recently. When he thought he had inflammation on his shoulder, he was told by health care professionals not to worry about it.

Ducos learned more about SFT from a group of about 500 on Facebook and saw a different reality. “This community helped me advocate,” he said.

He worked with a team to help launch SFTF and became a board member. As an SFT patient, he brings lived experience along with a professional background in healthcare communications, multicultural marketing, partnerships, equity and patient-centered outreach. They are quickly working to gather a medical advisory team. “It’s so rare, there’s no tissue to do research,” said Ducos.

Ducos is excited about the launch and terrified about SFT. “It can lie dormant in your body,” he said. “Five years is the surveillance for most cancers. You’re in a life-long state of surveillance. This anxiety – you have for the rest of your life. ‘Is it going to come back?’ is one of the daunting things you have to contend with.”