i have undergone loads of tests this year when a lump was noticed in a scan i had an abdominal lump. i have since had it removed and they had initially thought it was lymphoma but on further investigation have decided i have paraganglioma.
i have had to move consultants as mine had never seen a case of it. i have since seen the consultant and am waiting for a scan, but when i have tried to source more information on paraganglioma i find it very difficult.
i can't even really find any info on here it is very limited. also what i have read always mention lumps in the neck and head but mine was approx 2 inch x 3inch in my abdomen squashed in next to my intestine.
is there anyone else who has paraganglioma who could tell me more about it?
thanks
