A 27-year-old man diagnosed with an exceptionally rare form of cancer says he has no intention of letting the disease dictate how he lives, despite the seriousness of his condition.
Ben Wagenmann, a student living in Switzerland, said the first signs appeared in 2023 after he developed a chest infection following a skiing trip.
Not long after, in April that year, the German student noticed a lump on the side of his throat. Although the chest infection eventually cleared, the lump stayed and felt ‘uncomfortable’ when touched.
His father, who is a doctor, initially suggested antibiotics. When that failed to resolve the issue, Ben was referred for further investigation.
Months later, in November, a 3D ultrasound of his neck identified a mass behind a lymph node. An MRI scan later confirmed there was a tumor measuring around 6cm.
At just 25, Ben was diagnosed with cervical paraganglioma, a cancer affecting fewer than one in 100,000 people. If the disease spreads to nearby lymph nodes, survival rates can fall as low as 11 percent.
Cervical paraganglioma is a rare neuroendocrine tumor found near the carotid artery in the neck. It is often slow-growing, and many cases remain localized, but it can also become malignant and spread to other parts of the body.
The Cleveland Clinic describes paraganglioma as ‘a rare neuroendocrine tumor (NET) that forms near your carotid artery (the major blood vessels in your neck), along nerve pathways in your head and neck and in other parts of your body.’
The condition is typically slow-growing, and patients whose cancer remains localized can often expect to live close to a normal lifespan with treatment.
More recent reporting on Ben’s case has described it as metastatic cervical paraganglioma, meaning it has spread beyond the original tumor site. In Ben’s case, the cancer has reportedly reached his spine, ribs and other bones, making treatment more complex and long-term management more important than cure alone.
Ben said: “For my parents, it must be awful because I cannot imagine the feeling of knowing that your kid has cancer and potentially dies before you.
“For me – as hard as it sounds – if I die, I die, and I can’t really change that.
“But I’ll have the best time till then,” he added.
For the time being, Ben is focused on staying as active as possible, even though he says he is in ‘pain pretty consistently’.
He has taken part in the Bern Grand Prix in May for the past two years, completing the 16km route through the city.
He is also hoping to cycle 700km from Copenhagen to Oslo to visit a friend, although the journey will need to fit around his medical appointments.
Ben said: “I want to show the world that you can do all these things even when you’re sick. I really deny cancer (the ability) to take away my day-to-day life.”
According to The Independent, the cancer has spread to his bones. He underwent major therapy and was warned against staying active because of fears it could cause his artery to explode.
He later received radionuclide therapy, a treatment involving radioactive drugs, which succeeded in stopping the disease from spreading further.
However, the treatment did not shrink the tumor. It also left him ‘radioactive’ for a period, meaning he was unable to be around other people or anything he might contaminate.
With a cure no longer possible, the focus has shifted to extending his life. Ben has since accepted that reality and is determined to make the most of the time ahead.
In June 2026, the World Cancer Research Fund said Ben had continued his treatment while fundraising to support cancer prevention and survival research. It also said he had undergone complex surgery lasting more than ten hours, and that his care involved specialist teams across multiple hospitals in Europe.
The charity said Ben began sharing short videos about his daily life online, and that his story has resonated with people because it shows how much a diagnosis can change life without ending it.
It also reported that Ben completed a 16-kilometre race in Switzerland in May 2026 while on a treatment break, and that he is now exploring a cycling challenge in Norway to combine his love of endurance sport with fundraising.