Follow-up after metastatic melanoma is organised around recurrence: imaging, skin check, bloods. Almost none of it asks what the illness cost the person outside the hospital.
Three questions take a minute. Are you working, and at what hours compared with before? Has treatment left you with anything that has not gone away? Is money a problem? In today's survey those three domains — persistent toxicity, distress and finances — were the ones carrying the burden, and none of them appear on a surveillance proforma.
The cognitive complaint is the one most often dismissed. After cerebral radiotherapy it was the commonest persistent problem reported, and patients frequently do not raise it because they assume it is age, stress or imagination.
- Ask about working hours and early retirement at surveillance visits
- Ask specifically about memory and concentration after cerebral radiotherapy
- Measure the affected limb where axillary or groin surgery was done — lymphoedema is under-reported
- Use a validated distress screen rather than a general 'how are you coping'
- Have a named route for financial and vocational advice before you ask the question
Why it matters
The surveillance visit currently asks about recurrence and nothing about the life the treatment left behind.
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