In the Global Survey symptoms were defined as being a direct result of the disease.
A lot of the symptoms listed were the result of treatment in my experience.
Making no distinction between symptoms of disease and side effects of treatment is a missed opportunity.
The survey could have highlighted the scope for developing treatments with fewer side effects.
I agree. The survey failed to make a distinction between symptoms caused by the disease and by the treatments. In my case, I had no symptoms prior to diagnosis but taking monthly somatostatin injections then triggered bouts of diarrhoea, stomach cramps, etc (the symptoms usually ascribed with having NETs).
Mark has drawn attention to the situation of NET patients who are symptom free.
I believe that people in this situation have to deal with an additional challenge.
They must comply with the treatment regime which may produce side effects, and in addition
they must trust their doctors that their illness does indeed require treatment. Being symptom free
can foster doubts about the doctor’s diagnosis, adding to the stress of their situation