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
Your story is just… it’s so difficult. To go through ovarian cancer, and then face this uncertainty for two years, with those scan results and no clear diagnosis? It’s completely understandable you’re feeling frustrated.
I know it’s hard but keep pushing for answers. Make a list of your concerns and questions. Even if it’s just a member of the lymphoma team at your hospital present your questions to them.
You’re not alone in this, even if it feels like it. We’re here, and we’re rooting for you.
Aw thank you so.much for you’re kind words and reply. I had more pet scan results yesterday to be told a node has grown from 13mm to 2cm over 12 months so 7mm growth. Its in a place where biopsy is too difficult/risky. No diagnosis again with promises of discussing at MDT. The reality is, they will make the same decisions, and Im likely still just be actively monitored with no diagnosis. It’s really frustrating 
Hi @KateB,
I am sorry to hear about your pet scan result and all you are going through especially after having ovarian cancer too. It’s totally understandable that you are frustrated.
I hope that this time you will get more answers from the MDT. Please do let the team know about your concerns and how you are feeling.
I hope you have plenty of support around you and are looking after yourself and your well being. I have enclosed some of our information here about active monitoring which you may find helpful Blood Cancer UK Active monitoring
If it would be helpful to talk this through in more detail, please do not hesitant to contact our nursing support services team on 0808 2080 888.
Let us know how you get on.
Kind regards
Fiona (support services nurse)