I am looking for advice when claiming for a critical illness - I know the insurance company are looking to see that I match the definition but with a rare diagnosis I don't exactly match the definition.
I have a rare Neuroendocrine Tumour called a paraganglioma, which is staged/graded with something called a GAPP score. My insurance company only pay-out for Neuroendocrine tumours Grade 2 (intermediate risk) or above. My tumour is GAPP scored at 5 which puts it a intermediate risk level 2. I just don't know if this is considered the 'same' grading and because the Paragangliomas are rare and complicated there is very little information out there about it. Both Neuroendocrine Grades and GAPP scores are rated 1-3, low, intermediate and high risk. Both the grade and GAPP take the same types of information into account it is just that the GAPP includes a little more detail.
I am just trying to work out if there is any information out there to help me.
I have also had Genetic mutation found and have further CT/MRI and blood tests to see if it has spread anywhere - should I wait for these results?
