By Anja Opitz
After his testicular disease, Diego Steinhöfel registered with the new study portal for young adults with cancer.
He was just 24, doing a semester abroad in Argentina and cycling across a 5,000-meter pass when he first experienced pain in his testicles.
Diego Steinhöfel returned to Germany, was in pain again and immediately went to the doctor. That was his luck. “The tumor hadn’t spread yet because I discovered it very early on,” says the 34-year-old Berliner. “It could be surgically removed, radiation and chemotherapy were not necessary.”
That’s why he hardly had any physical complications, but: “There were many psychological challenges: I had to learn to trust my body again and find my way back into my own life. When I first got the flu, I thought the cancer was back and I didn’t know how to deal with it.”
The problem: There is hardly any scientific information about cancer in young people.
“In Germany, 16,500 women and men between the ages of 18 and 39 are diagnosed with cancer every year,” explains Felix Pawlowski (34) from the German Foundation for Young Adults with Cancer. As recently, soccer star Sébastien Haller (28) from BVB has testicular cancer.
“The problems of young patients are sometimes very different from those of older patients: How can I finish my education, return to work, start a family despite chemotherapy? What consequences can the therapy still have in 20 or 30 years?” According to the Head of Press and Online Communication, the data on this is very poor because it was not documented years ago how those affected were doing in the long term. This is exactly what the foundation wants to change now.
“We added the study portal to our young cancer portal,” explains Pawlowski. “There, all those affected who have registered have the opportunity to take part in current studies.”
Participation is voluntary, but: “Many of those affected take part because they want others to be better off with the disease than they are,” says Steinhöfel.
“Through the study portal, I can help scientists learn more about cancer in young people – and that later benefits the patients directly,” explains the political scientist, who wrote a book about his experiences for which he is now looking for a publisher . “My data form the bridge between research and patients, so I can help.”
