A man, 27, shared his experience of undergoing treatment for an extremely rare condition that left him “radioactive.” Diagnosed with a cancer that affects fewer than one in 100,000 individuals, he underwent nuclear treatment that required isolation in an underground facility for several days. Ben Wagenmann, a German student residing in Switzerland, first noticed a lump on his throat in April 2023 following a skiing trip that led to a chest infection.
Despite initial improvement in his symptoms, the persistent lump prompted further investigations. A 3D ultrasound revealed a mass behind a lymph node, confirmed later by an MRI to be a tumor measuring up to 6cm. At the age of 25, Ben received a diagnosis of cervical paraganglioma, a slow-growing tumor in the neck’s carotid artery, causing symptoms like a painless neck mass, difficulty swallowing, voice changes, and nerve weakness.
Ben’s treatment involved radionuclide therapy designed to target and eliminate cancer cells internally. Although the therapy successfully prevented further spreading, it did not reduce the existing tumors. Ben now focuses on prolonging his life rather than seeking a cure, accepting the likelihood of a shorter lifespan.
Reflecting on his situation, Ben acknowledged the emotional impact on his parents but maintained a positive outlook on making the most of his time. An active individual who enjoyed cycling and skiing alongside studying AI and medicine, Ben’s skiing trip in April 2023 led to the discovery of the lump on his throat, which persisted despite initial treatments.
Facing uncertainties due to the rarity of his condition and its unpredictable spread, Ben’s doctors consider his cancer incurable. Regular hospital visits for scans keep him vigilant about any changes in his condition. Despite experiencing consistent pain, particularly in his back and legs, Ben remains determined to maintain an active lifestyle with physiotherapy and medication support.
Ben’s story is part of the World Cancer Research Fund’s Every Step Tells a Story campaign, highlighting individuals impacted by cancer and their advocacy efforts. To learn more, visit the campaign’s website at www.wcrf.org/support-us/every-step.
