Hederik de Vries, 32 years young, started an unclear medical process in June 2018 – to what later turned out to be a PTO process – with slightly double vision in his right eye.
Initially, he went to an orthoptist who suggested checking his vision after the summer to see if there would be an improvement in the complaints. During that summer, his right eyelid began to droop and the double vision gradually got worse. After a CT scan in early August, a long period of uncertainty started in which numerous possible diagnoses emerged, coupled with further investigation. It was initially thought that the “space-occupying lesions” found on his third cranial nerve and later on other cranial and spinal nerves were an aneurysm, a benign brain tumor (bridge angle tumor), or a special form of neurocysticercosis. However, the picture was not entirely consistent with comparable, known conditions. And that is why they also looked for possible tropical diseases because Hederik had spent a lot of time in several Asian and African countries in recent years for his work as a management consultant. In the meantime, there was constant testing for all possible infections, autoimmune disorders, and cancers, and Hederik underwent ultrasound, CT, MRI and PET scans of multiple organs and body parts. He could be found in the hospital once or twice a week for another examination. Each time, nothing conclusive came out and a diagnosis was not forthcoming.
Until the end of November 2018 in a new hospital for the first time the conviction came that it must be cancer, because that was actually all that was left. All possible existing tumors were (re)examined for this. At the beginning of December, in yet another new hospital, the doctors again went down the route of a possible infection because what they found did not actually belong to the known forms of cancer. At the end of December, there was no other choice than to take a biopsy of a sensory nerve via a risky and radical operation, and on Christmas Eve it was clear that it was definitely metastatic cancer. For the first time, the diagnosis PTO came forward. Doctors still wanted to continue the search for where the primary tumor was, because PTO was actually a half-diagnosis, and there was also talk about treatment options. After all, Hederik was so young, and until recently, fit so if anyone could handle a treatment it was Hederik. In the meantime he had been in hospital since early December, he had lost weight and weakened and unfortunately his pain could not be permanently controlled. However, his doctors could not give a prognosis, let alone say anything about the quality of his life, because the primary tumor was missing.
It was decided to start a first treatment in the form of a general course of chemotherapy on January 11, 2019. For the first time, doctors had the cautious hope of being able to improve his situation, after a diagnostic process of more than six months. For Hederik himself, his loved ones, loved ones and friends, that also gave hope amid all the constant fear. It did not help. Hederik died on January 12, 2019, at much too young age, in the arms of his girlfriend at the intensive care. His death was therefore unexpected and his doctors had not seen it coming in this way.
Hederik’s girlfriend and groups of friends joined forces in the autumn of 2019 to find a solution for CUP, also in memory of their good friend and loved one. They have united in the Friends of Hederik Foundation. Together with the Stars Foundation, they founded Missie Tumor Onbekend in 2020.