It’s been over 3 weeks since my GP told me my white blood cell count was high and it was likely I had Chronic lymphocytic leukaemia (CLL). I I’m my 70’s and lost my husband 2 years ago. I felt that I was just getting my life back and then this …! I have not heard from Haematology, but they contacted my GP and asked for more blood to be taken for Flow cytology. That was 14 days ago, but of course Easter has been in between. I am wondering what this blood test might mean and I just wish I would hear from someone!
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Hi @Kas44 thank you for your post, I’m sorry you’re going through what must be an unsettling time for you.
In case it’s useful, we have some information on our webpage here, about different tests for Chronic lymphocytic leukaemia (CLL) - Chronic lymphocytic leukaemia (CLL) tests for diagnosis | Blood Cancer UK
It explains:
“Immunophenotyping (also known as flow-cytometry) is a technique used to find out if you have Chronic lymphocytic leukaemia (CLL) cells in your blood and if so, how many there are. It’s more sensitive than a full blood count, so even if there’s only a small number of Chronic lymphocytic leukaemia (CLL) cells, it can still detect them”.
You’re well within your rights to feel informed about your situation and next steps, so don’t be afraid to contact your GP and the haematology team to ask any questions you may have, including around what sort of timelines you can expect going forward around having this test and receiving results.
I’m sure there will be others on here who have experience of this diagnostic test who can shed some light on how the experience was for them.
Just in case it’s useful, at any point now or in the future, we have an information booklet on Chronic lymphocytic leukaemia (CLL) here. It’s free to download or order.
Please don’t hesitate to get in touch with us on the support line if there’s anything we can do to support you or if it’d be useful to speak to one of our Nurses. Our Freephone number is 0808 2080 888. Best wishes, Alice
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Oh @Kas44 The waiting and not knowing is a really horrible time isn’t it.
@Alice_BloodCancerUK has given you a great response.
I am so sorry to hear that you lost your husband two years ago and now this shock.
Perhaps it is time to chase your GP surgery.
I am also in my 70’s and have Chronic lymphocytic leukaemia (CLL). I was diagnosed 20 yrs ago, I have been a very lucky girl and been on ‘watch and wait’ (active monitoring) all that time.
I have been referred back to my GP for monitory by my hospital haematology with the proviso that I could be referred back if anything appeared to be amiss.
I go to Pilates and I am a great walker.
Please do let us know how you get on and really look after yourself.
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Thank you. That was all very helpful and I will look at the things you suggest.
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Thank you Erica. I hope I will be as lucky as you - for the time I have left anyway! I was thinking about contacting my GP to see if he can tell me anything, or maybe even chase results. When I know more I think I will feel better.
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Hi, I have just heard from my GP. Blood results show only Chronic lymphocytic leukaemia (CLL). No cells show any aggressive disease and no treatment needed. I will be under the care of Haematology but apparently I will only get an appointment in due course, as not urgent. Sounds mad to be happy about it, but it means I can just get on with life.
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Oh, @Kas44 I have learnt to celebrate every single little win,
Everything you say seems the normal way forward.
On the Blood Cancer UK website there is information on watch and wait (active monitoring), sorry I cannot copy the link but I am technically challenged as I am working from my mobile phone.
Yes, definitely get on with your life but perhaps just be aware of the emotionally impact, I still feel anxious before and during all tests and appointments, I think its natural. Please do keep posting.