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Natural Killer cell Lymphocytosis

GriffW
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I had a blood test at the end of April.  The result was abnormal with elevated white blood cells that were ‘different’ to each other.  I was referred to haematology, and saw her on 20th June. She said that it looked as if I had CLL, mentioned some large granules, and that it seemed as if I had had the condition for around three years.  She emphasised that it was not an acute leukaemia, but that they needed another blood test to send to Cardiff for a diagnosis.  That took 6 weeks.  I saw a different haematologist on 1st August, and was told that the diagnosis was not what they expected - and that I had rather a rare diagnosis - she only had four on her ‘books’ and I am the fifth.  She explained that my condition has some ‘clonal’ NK cells (at least I think the word she used was clonal). My sister came in with me, but neither of us could recall some of the things said.  I had meant to ask her to write it down, but we both forgot.  Anyway, she said that it is mild, and that at the present time, they do not advise treatments because they could make me feel even worse than I do now.  During the appointment I asked if it was called Natural Killer cell leukaemia, and she said ‘yes’.  I believe she also said that the high WBC was neutrophils.  BUT, she also said that I am neutropenic.  She ordered another blood test which I had before I left, and I was meant to have some literature about the illness. The literature was forgotten by me and by the nurses.  When I got home, I tried to look it up at home online - but could only find NK cell leukaemia which is aggressive - and I know that this is NOT.  I rang her secretary then, and was given the diagnosis which is ‘NK cell Lymphocytosis with neutropenia’ - I still cannot find any more information online about this.  I would like to know if it IS Leukaemia or not. A relative of mine has said she doesn’t think it is.  I had told my family that it is leukaemia, but maybe it is not.  I am now over 80 and have a lot of other health problems.  I would be grateful for further information - I have another eight weeks before I see the haematologist again.  It seems a long time to wait.  Thanks in advance.  

  • Hello and thanks for posting

    Natural killer(NK) cells are a type of blood cell that play a role in your immune system. When there are more NK cells than usual. it is known as NK cell lymphocytosis. There are a few different causes for this condition.

    There is a condition known as reactive lymphocytosis. This is usually a temporary increase in NK cells due to infections or other immune responses. It's generally not serious and can resolve on its own.

    Chronic NK cell lymphocytosis is a more persistent increase in NK cells. It's usually not considered to be leukaemia, but it does mean that the body is producing more NK cells than usual over an extended period. This condition often requires monitoring and may not need immediate treatment.

    NK cell leukaemia is very rare and involves the malignant growth of NK cells. From what you have written, it sounds like your doctors are not suspecting this. But only they can clarify your exact situation. When you next see the haematologist they will provide more specific information on your individual circumstances.

    I hope this is of some help. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes,

    Celene

  • Offline in reply to CRUK Nurse Celene

    I did get to speak to her again yesterday afternoon, and she explained that what I have is very rare - and that it is a mild form of leukaemia.  She is going to send me some CLL information about it - apparently,  I was mistaken when I said the neutrophils were high, apparently it was the lymphocytes that were high.  She explained that this condition comes under LGL.  They are going to keep me under close observation.  Thank you VERY much for your kind reply.  

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