It can be a very frustrating and stressful process, but try not to get disheartened. If your clinic allows it, why not ask a family member, partner or friend to come with you to appointments to support you? If there are COVID restrictions on the number of people at the appointment, you could take a notebook with a list of things you want to discuss, and you could take down notes while you’re there. Don’t be afraid to ask lots of questions so you understand what’s going on.
Why does diagnosis of GEP-NETs take so long? There might be a number of reasons:
- GEP-NETs are rare, and not always suspected by doctors at first1
- The symptoms of GEP-NETs are very vague and can be put down to a lot of other conditions. Flushing could be a symptom of menopause, for example, and diarrhoea and fatigue can be caused by any number of things. It can take a long time to rule out all the other possible causes of symptoms2
- The symptoms of GEP-NETs vary greatly from person to person, depending on where the tumour is and which hormones (if any) it is producing. Another person with GEP-NETs might have completely different symptoms to you1
It’s hard to persevere through all the various tests and appointments, but it’s important to get to the right diagnosis in the end so that you can start on the right treatment for you. Keeping a diary of your symptoms can help.
Singh S et al. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2017;3(1):43-53.
Basuroy R et al. Delays and routes to diagnosis of neuroendocrine tumour. BMC Cancer. 2018; 18: 1122.