Hi I have just been diagnosed from my flow blood tests
They are "B Clone cell detected, approx 39% of the lymphoid population - (bloods from 22nd Aug) Positive for Kapp CD19, CD20, FMC7,CD79b, Negative for CD5,CD10,CD23,CD200,CD38, Igm,CD11c,CD103,CD25. Consistent with Low grade B cell NHL ( Non Hodkins Lymphome) Then states - Immunophenotype most consistent with MZL ( Marginal Zone Lypmphoma, and LPL type - not sure what these are but both quite rare.
Bloods increased late aug to 12,300 so rising steadily. My GP thought I could be fast tracked ( my stomach is swelling and I have a stiff neck on one side) but was told it would not be fast tracked so I have no idea of treatment, further tests etc. Very lucky to have private cover, so I will be going private so not to wait and love to have a recommended specialist, I am based in the Uk
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Obiecat
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Hi, I’m surprised your GP has not referred you to a haematologist, my bloods were all ok but the way to diagnose lymphoma is with a biopsy. I had stage three NMZL last year.. I saw an ENT consultant who wanted biopsy on my neck, when it was positive he referred me to haematology and I had further biopsies in my bone marrow, under arm and neck. This let them know what type it was, NMZL is quite a rare one but they treatment is the same as follicular lymphoma. The ct scan showed them what stage I was at. They also have to determine if it’s indolent or aggressive. Mine unfortunately came back six weeks after treatment. I’m now on watch and wait and getting checked every 3 months. The multidisciplinary team decide when and if treatment is required. I hope this helps and hopefully you don’t need treatment.
Thank you for your reply- I’ve got a consultant appointment in London next Thursday- I suppose I will get the scans done. I don’t have any lumps that I’m aware, but tired and feeling achy, white blood count increasing. I hope I get a definitive diagnosis soon. It is the uncertainty that is awful.
Hi Obiecat, I had private cover but went for diagnosis and treatment via NHS. I have low grade F-nhl and was treated very quickly because I had symptoms affecting my quality of life. The NHS has a gold care standard of treatment for this. They deal with this all the time and have people and processes in place. I would strongly advise you to go via the NHS as soon as possible. You will get all the aftercare and support you need, which private care providers are very poor at.
Thank you Maurachristine. I wanted to go initially via NHS and I agree they are gold standard ( my husband is disabled and his treatment has been great), but my GP said they would not put me on a fast track for a consultant. The stress levels of not having a proper diagnosis and having private cover means I am fortunate enough to go private- to The London Macmillan Cancer Centre - it’s also a teaching hospital, I’m seeing a professor who specialist is Lymphomas and other blood cancers . My abdomen is swelling and I now have a rash on it ( small red spots). But some are bigger- noticed it this morning. How long did your diagnosis take and what were your symptoms ( if you don’t mind me asking? ) It’s looking like I may have a rare nhl on my blood results.
Specific diagnosis took about 4 weeks because of Mri, then Ct then biopsy. Symptoms were bloating, fatigue, susceptibility to throat and bladder infections, because immune system was at a low ebb. The bloating was caused by my spleen swelling.
Try not to worry because it won't change the outcome. Whatever happens, it'll work out. They have great treatments these days. Good luck.
No, my bloods weren't normal but they can't provide a specific diagnosis until a biopsy is carried out. They will look at the rogue lympocytes and make a determination of the type (indolent/slow growing or aggressive and the grade and stage)
Check out lymphomaaction.org.
They provide lots of support in UK. Please don't jump ahead of yourself. Believe me, it's not the end of the world. My disease is incurable but treatable. I am living a normal life and it just sits in the background. I treat it as part of me now. It's like gardening, it will just need to be weeded out now and again.
Be patient and try not to worry ( I know, a tall order) Even though I had swollen nodes all over my body, it took 7 different biopsy procedures to confirm the diagnosis. A long, scary, and frustrating experience-but I got through it. Keep fighting!
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