Milea Timbergen

266 Supplemental Table 3. General remarks and quotes from patients Remarks Quotes Difficult to interpret some of the questions since many issues change over time Due to multiple recurrences; ‘fear for a new tumour rather than recurrent tumours’ Psychological support at the beginning of the disease • “I would have loved at the beginning is psychological support. Being a very active and confident person, adjusting to initial limitations was very hard and I really struggled both physically and mentally” Some issues are caused by the operation rather than the tumour itself which is difficult to distinguish from each other Having a benign tumour which is aggressive, but no cancer • “The biggest problem is having an aggressive recurrent tumour treated by oncologist with cancer treatment being less than cancer” • “It’s benign so it’s not going to kill you; the only thing it could do to kill you would be to suffocate you if it overwhelms your organs” A good band with your treating physician • “I learned thinking positive from my treating physician” Fear of tumour growth during and after pregnancy • “Especially post pregnancy with fear of further desmoid developing from scar from the caesarean section” 9