MCC is painless and symptomless for most patients, both prior to diagnosis and during the journey.

Overall, living with MCC is close to normal in terms of daily functioning; patients are still able to perform their activities of daily living and still have all their physical capabilities. In contrast, MCC has a substantial psychological impact on the patients and their relatives and friends; in most cases, patients are scared of the unknown and the future.

Patients described chemotherapy and radiotherapy as highly debilitating, both physically and mentally.