Hello all-hope this is ok to post. Long aand short of my story is that I had ovarian cancer in 2022 which was successfully removed with surrounding lymph nodes that were clear 
After a follow up CT scan in gynae, it raised alarm with their radiologist saying it typically presented as lymphoma…after bone marrow biopsy, endoscopy, throat biopsy all inconclusive or not enough tissue and nodes to far inside me (mesentric) to get a biopsy. Im on watch and wait but no one can formally diagnose me. Its driving me mad and its been 2 years now. I still have fdg uptake in my sleen and various nodes but my bloods are fine…has anyone else experienced anything like this? Ive kind of learnt to get on with it, as I feel well-but do suffer from awful upper central stomach pain that is only brought under control with morphine. (Consultant thinks this is small bowel obstruction from scarring from surgery) any advice? Anyone gone theough anything similar? Thanks for reading x
Hi @KateB a welcome to our forum and I am so glad that you posted.
I was diagnosed by a gynaecologist, but without the number of tests that you have had.
That was 21 yrs ago and I saw a haematologist annually for over 15 yrs and then was referred to my GP for monitoring.
I am also on watch and wait (active monitoring) with blood tests every 3 - 6 mths.
Do you feel it would give you peace of mind to talk to whoever said that you are on watch and wait for lymphoma and monitors your results and ask them outright what your fears, questions and practicalities are. Have you got lymphoma or not even?
I find it helps to write down what I want to say first and be pleasantly assertive.
Please do let us know how you get on and really be kind and look after yourself