Ben Wagenmann is coming to terms with the fact he can’t be cured and his life will be shorter
A 27-year-old man has explained how he was left “literally radioactive” after treatment for an ultra-rare disease.
He was diagnosed with an ultra-rare cancer affecting fewer than one in 100,000 people and said he had a form of nuclear treatment that required him to be isolated for several days in an underground ward. Ben Wagenmann, a German student living in Switzerland, said he first noticed a lump on the side of his throat in April 2023 after he went skiing and got a chest infection.
While his symptoms improved after a week, the lump – which Ben said felt “uncomfortable” when he pressed on it – persisted. The lump was still there by November, so he said he had a 3D ultrasound on his neck that revealed a mass behind a lymph node, before a follow-up MRI confirmed it to be a tumour up to 6cm.
Ben received his rare cancer diagnosis of cervical paraganglioma in his carotid artery aged 25. Cervical paragangliomas are slow-growing tumours in the neck containing many blood vessels that may compress nearby structures and lead to a painless neck mass, difficulty swallowing, voice changes and weakness of nerves, according to a US medical journal published in the National Library of Medicine.
While his treatment, which included radionuclide therapy – radioactive drugs that target and kill cancer cells from inside the body – successfully prevented further spread, it did not shrink existing tumours. Now, Ben’s treatment is to try to prolong his life, rather than cure his cancer – and he has had to come to terms with the fact that his life will likely be shorter.
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.”
Ben said he had always been a “very active” person – loving cycling and skiing in between his studies of AI and medicine. After one particular ski trip in April 2023, a chest infection led to Ben noticing a lump on the side of his throat that felt “uncomfortable” when he pressed it and “it didn’t really go away”.
With no other persistent symptoms almost two months after his infection cleared, Ben said he mentioned it to his father, who is a doctor, and was advised to take antibiotics, but it did not clear up. By November, Ben had an ultrasound and then an MRI that identified a tumour that was pushing on a major artery, but he said doctors reassured him that it was likely a “pretty slow-growing tumour” but that there was “nothing to worry about” because they are almost “always benign”.
But just before Christmas, Ben said a PET scan revealed around eight “tiny glowing bubbles” in his spine that were “actually metastases”. This is how Ben said he got his cervical paraganglioma diagnosis, aged 25.
He said: “Everything went very quickly because this shouldn’t have been the case… it was extremely rare.”
By January, Ben had a 10-hour surgery that he said “turned out to be extremely difficult” because it was a major artery. For the next three months, Ben said he was not allowed to exercise because doctors were concerned his carotid artery “may blow”.
Within this time, Ben had a follow-up PET scan where doctors discovered his cancer had spread to his bones, including throughout his spine, ribs and hip. Ben said doctors did not know what to do next because there was “no clear guideline” on how to treat his rare cancer, but it was decided he would undergo radionuclide therapy at a hospital in the western Germany city of Aachen – around six hours away from Bern, where he lived. From the summer of 2024, Ben had six cycles of the radioactive compound, lutetium, injected into him in an underground isolation ward.
Ben said: “You’re not allowed to be near anyone because you’re literally radioactive. I was so radioactive that there was no shower in the hospital room because every bit of water that I would either digest or touch would be contaminated with radiation.
“It’s a weird feeling, especially because you’re alone, but I watched a lot of shows, read books, listened to podcasts and called friends and family. Then when you get home, there’s a one-week period where you aren’t allowed to hug anyone or sleep in the same bed, or be close to pregnant people or children, because you’re still radioactive.”
Scans after Ben’s third cycle revealed his cancer had not shrunk, but it had stopped the spread. Ben said: “It is still a win in my situation because as long as it doesn’t grow, I’m good in a way.”
After Ben’s six cycles of radionuclide therapy, he said he had had two other forms of radiotherapy, often with “really annoying” side effects, like when his oesophagus got “inflamed” for several weeks.
He said: “Whatever you do, you’re just in pain – eating hurts, drinking hurts, speaking hurts, doing nothing hurts.”
Due to how rare Ben’s cancer is and the unpredictability of its spread, doctors believe his cancer is incurable and they cannot accurately tell him what his prognosis is whenever he goes to hospital, which is usually at least once a month.
He said: “Every time you get the (scans), there’s always the question: is it staying the same or does it get worse?”
For now, Ben said he was trying to keep up an active lifestyle, despite experiencing “pain pretty consistently” – especially in his back and legs – that he manages with regular physiotherapy and pain medication. For the last two years running, he did the Bern Grand Prix in May, a 16km race through the Swiss city, and he planned to cycle roughly 700km from Copenhagen to Oslo to visit a friend, but he is not sure when he might be able to do it in between 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.”
Ben shares his story as part of World Cancer Research Fund’s Every Step Tells a Story campaign, which spotlights people whose lives have been shaped by cancer and the volunteering they undertake. To learn more, visit www.wcrf.org/support-us/every-step
