A 27-year-old man has shared his experience of undergoing treatment for an extremely rare disease that left him “literally radioactive.”
Ben Wagenmann, a German student residing in Switzerland, was diagnosed with a very uncommon cancer that affects fewer than one in 100,000 individuals. He underwent a specialized nuclear treatment that required him to be isolated in an underground facility for several days. Ben first noticed a lump on his throat in April 2023 after a skiing trip followed by a chest infection.
Although his symptoms initially improved after a week, the lump persisted and was still present in November. Subsequent 3D ultrasound and MRI scans revealed a 6cm tumor behind a lymph node on his neck. His diagnosis was cervical paraganglioma, a slow-growing tumor in the neck that can cause a painless mass, swallowing difficulties, voice changes, and nerve weakness.
Despite undergoing radionuclide therapy aimed at targeting and eliminating cancer cells internally, Ben’s treatment did not reduce the size of existing tumors. His current focus is on prolonging life rather than seeking a cure, acknowledging the likelihood of a shorter lifespan.
Reflecting on his situation, Ben expressed understanding of his parents’ feelings but maintained a positive outlook on making the most of his time. He emphasized his active lifestyle, which includes pursuits like cycling and skiing alongside studies in AI and medicine.
Ben’s journey involved a series of treatments, including radionuclide therapy and radiotherapy, each accompanied by challenging side effects. Due to the rarity and unpredictable nature of his cancer, doctors believe it is incurable, making prognosis uncertain during hospital visits.
Despite experiencing persistent pain, particularly in his back and legs, Ben remains determined to maintain an active lifestyle. He participates in events like the Bern Grand Prix and plans extensive cycling trips, showcasing his resilience and refusal to let cancer dictate his daily life.
Ben’s story is part of the World Cancer Research Fund’s Every Step Tells a Story campaign, highlighting individuals whose lives have been impacted by cancer. To learn more about the campaign, visit www.wcrf.org/support-us/every-step.
