Improving long-term morbidity and treatment outcomes in patients with rare malignancies

Rare malignancies make up about a quarter of all cancers. The prognosis of patients with such tumors depend on the tumor type, and some patients will receive long-term care and follow-up by their team of oncology care providers. For one, patients with metastatic testicular cancer are often successfully cured by means of surgery and chemotherapy, but are at risk of adverse effects caused by the treatment. We examined a group of former testicular cancer patients and age-matched healthy controls. We found that survivors showed signs of early vascular damage - a risk factor for developing cardiovascular disease, as well as underperforming on several cognitive function tests. Patients with neuroendocrine tumors on the other hand, are not as often cured as patients with testicular cancer. However, this form of cancer grows much more slowly and therefore patients often live for years, even if the cancer has spread. One of the side effects of the treatment in this group of patients is the development of vitamin deficiencies. We investigated how often these deficiencies occurred and showed that we could successfully supplement the vitamin deficiencies we found. In addition, we investigated the added value of an online information system to better inform patients with neuroendocrine tumors about their rare form of cancer. The implementation of such a system did not appear to result in a measurable improvement in patient satisfaction with the information provision, despite positive feedback from various participants. We concluded that such an online information system could benefit from the possibility to ask questions about the information provided to a healthcare provider with expertise.