Milea Timbergen

233 not satisfying. This observation was substantiated by multiple questions from participants about DTF during the group sessions. Treatment Participants with minor symptoms and solely treated with surgery reported being glad or relieved that the tumour was removed as they had the feeling that it ‘did not belong to their body’. One participant with major symptoms from an intra-abdominal tumour felt that surgery was the only treatment option, but feared for a stoma or dying during surgery. Participants with a conservative management reported to be satisfied since they had minor symptoms and potentially mutilating surgery could be avoided. Follow-up and recurrence A common theme in the qualitative study was fear of recurrence or worries about the future and future health. Not all participants were correctly informed about the risk on local recurrence. Feelings of uncertainty remained present during follow-up because of the knowledge that the tumour may be able to recur. One participant with DTF localised in the lower extremity, reported struggle with weakness in the leg due to previous treatments, which made her fearful of the future. Physical domain The most common symptoms before diagnosis are described in Table 2. Complications of treatment included infection of the surgical wound, and severe neuropathic pain due to nerve damage. Residual issues after treatment regarded scars, being asymmetrical, having function restrictions, oedema, stiffness, lack of sensibility and muscle weakness. One participant used a wheelchair and crutches due to a lower leg amputation, another patient used an electric wheelchair due to severe neuropathic pain after being treated surgically. One participant reported that physical therapy was not offered to her, but in retrospect she would have appreciated it since she experiences weakness of the affected limb. Emotional / psychological domain Participants expressed that ‘they felt they did not have a choice’ and ‘they will face the situation as it comes’ and learned how to deal with their problems over time. Life- style changes included minor adjustments because of functional limitations and major adjustments including movement to a ground floor apartment. One participant reported that DTF restricted her from having another child, which had a major impact on her family. One participant reported a low self-esteem and problems with body image due to scars. Another 8