Hello.

I was told that it's not lymphoma and was discharged from them. But l still got all my symptoms and don't know where to go for help. My symptoms started from feeling that "something" was stuck in my throat, than l found a lump in my clavicle area, but both US and CT scans didn't show any abnormality, than l started to feel very bad abdominal pain, pain in my back, very tired and fatigue, lost appetite, l've got horrible night sweats, and for the last 6 weeks l've got diarrhea, l'm off sick from work for more than 3 months now, without any diagnosis. Feeling low and frustrated. Don't know what to do. I've been told it's all. In my head

I really feel for you.  It makes me so angry when doctors are too quick to put everything down to anxiety.  I was referred to a respiratory consultant who apart from not even looking up as i entered the room, said he would not do any tests because listening to my breathing was the best test and I was suffering from anxiety.  Then he said i was discharged.  My GP then referred me to an NHS ENT specialist who said he had read the respiratory consultant report and all i need is speech therapy and discharged me  I've lost 2 months and it makes me mad because within that time, my symptoms have worsened.  Then if the CT scan does reveal anything, its more tests and waiting.  I'm a wreck.  I feel your pain.  I ended up going private but that has not been quick either :(.  If your lump is still there in a few weeks i would go back.  

I guess every hospital is different. After seeing an ENT consultant, he decided I needed an ultrasound and biopsy. I was told this will tell them if it is lymphoma and what kind of lymphoma it is, there are loads of different types. After I was positive, I then got a ct scan to tell them what stage I was at. Biopsy is the only way to tell you if it's lymphoma I'm afraid. Maybe if they see anything in the ct scan you will then be referred for a biopsy. Best wishes xx

Thank you for responding. It sounds like they are handling my case the other way around ie with the CT scan first.  How long did it take you to get a firm diagnosis and then a treatment plan?  

Hate to say it, I first went to my GP in May, was sent to ENT, then had biopsy. Had CT Scan, bone marrow biopsy then another biopsy in another part of body to see if it was aggressive or indolent. Had to wait for the MDT to decide what treatment was required. I started chemo in August. One month after I finished treatment a lump appeared in my neck again. Another biopsy and ultrasound, X-ray and it showed the same lymphoma was back. This was two years ago and I'm on watch and wait now. Treatment is not always offered right away. The first time I was stage 3, possibly 4 and had B symptoms. I have a great haematologist which I trust her very much. Only thing is because of covid my 3 monthly checkups are now a phone call, no examination or ct scan. If I am worried she tells me to call her. I just wish I would get at least another ct scan to see if it's got bigger around my lungs. But you have got to live with it knowing it could get worse or it could stay the same for years without treatment, fingers crossed that's what I'm hoping for. Xx

Fingers crossed for you xx

Hi

I am being dealt with the same way. CT first, US and bloods via hematology referral. I have a telephone appointment on Friday but my GP told me today they can see lymph nodes in my chest on the ct but she couldn't say alot more other than she doesnt think they are big enough to be causing my breathlessness. I guess I will patiently awaited fridays appointment but I wondered if you had any further information on your treatment/diagnosis since this post?

Thank you 

Hey I hope you are okay and everything went well on Friday. I am sorry to not answer your question but to ask one. I had a biopsy on thursday and am due to get them next week but on the phone. Did you recieve your diagnosis in person or on the phone?