I had my blood test results.
It says Persistent lymphocytosis, some smear cells, suspected LPD/CLL, refer haematology. Reactive lymphocytes seen in moderate numbers.
WCC 14.9
Lymphocyte count 8.5.... ?
My dad and his brother died of a type of leukaemia and I’ve been found to have an excessive amount of cervical lymph nodes.
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Hi Heather,
I see you have been a Health Unlocked member for at least 5 years, but this is your first posting to our group.
Your test results mention needing a referral to Haematology and those medical specialists will likely order a FLOW test
lls.org/managing-your-cance...
to determine if you have a Lymphoproliferative disorder (LPD)
en.wikipedia.org/wiki/Lymph...
The most common LPD is what our group has in common: Chronic lymphocytic leukemia (CLL)
mayoclinic.org/diseases-con...
Chronic lymphocytic leukemia (CLL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.
The term "chronic" in chronic lymphocytic leukemia comes from the fact that it typically progresses more slowly than other types of leukemia. The term "lymphocytic" in chronic lymphocytic leukemia comes from the cells affected by the disease — a group of white blood cells called lymphocytes, which help your body fight infection.
Chronic lymphocytic leukemia most commonly affects older adults. There are treatments to help control the disease
So your doctors need more information before we can fully welcome you into our group, but please look around, read the "Pinned Posts", "Related Posts" & our welcome messages, etc.
Len
I have been a member for around that time due to a number of illnesses I have, this has only just been found out as a possible issue on top of everything else, so that’s why it’s my first posting in this group, I was just wondering if people with the diagnosis were found to have CLL in similar circumstances. Also anyone who has too many lymph nodes as an indicator.
Thank you for your reply
Hi heather, certainly enlarged lymph nodes could be an indicator. It could indicate other things too (eg an infection).
But try not to panic just yet.
You don’t have a diagnosis yet. This might just be a scare. But you have found the right group if it does turn out to be cll.
Where do you live?
You might want to make sure that you are referred to one of the top centers just because they often have more time to explain things.
And it must be even harder as you know that there has been Lukaemia in your family. But no one thing and hold on to it: there has been massive improvements in treatments over the last few years.
Even if you do have a Lukaemia you may not need treatment for years if at all, and if you do need treatment they are often very successful these days.
Make sure you take someone with you to your appointments. And a pen and paper.
If you have any way of finding out what specific type of Lukaemia your family members had that might be of interest to your haematologist. But don’t assume you have the same thing. It’s not as simple as inheriting the disorder since people can have different illnesses inside the same family. And you may not have anything, at least your doctor wants to get you checked out though which is a good thing.
Be kind on yourself. We have all gone through the anxiety of waiting for results (the flow test takes a week or so to come back which feels like an eternity!) and for those of us with a diagnosis of CLL I don’t think anyone will take that calmly.
Hang in there. Cling to those you love. And whatever happens if you do have cll we will be here for you in this group. There are also helplines you can call too which can be very helpful.
Thank you for your reply. It wasn’t the gp who wants me seen by a haematologist though it was the blood testing doctor. There’s no way of finding out what type of leukaemia my family members had I’m afraid. My father passed away 1991 and his brother when I was 9.
I will wait and see and if it is CLL I’m sure you all will help me through it.... I live in the Staffordshire area.
Prof Peter Hillman in Leeds is the top consultant for cll in the country. But he might have a bit of a wait on so maybe better to go to someone more local. If you click on my name you can find a list of FLAIR sites from an old post of mine. They should all have enough expertise in and interest in these kinds of conditions to do a good job with helping you though the tests and whatever the results show. I would be wary of any hospital that wasn’t a FLAIR site as some haematologists are less sympathetic to people with these kinds of conditions than others. If you’ve already been referred you can check it agains the list or you might get the opportunity to choose. Or just go with who You are already on a list for and ask for a second opinion if needed. Your GP should be happy to organize that. Don’t be put off. And don’t stick with any doctor you don’t feel confident with!
Thank you
Heather - you might want to put up a new post with personal information like your location, which you can "lock" - at the very bottom of your post you have the option of changing the default setting of everyone to community only, which prevents your information from appearing on google, etc. Systems vary from country to country, but this is a very international group, so someone is bound to be familiar with how things work where you are.
I recommend recording your appointments, as it is very helpful to be able to go home and listen to what was said again. I was shocked at how much I missed when I was new at this.
If you read through posts here you will find that many were discovered to have CLL while dealing with something else - labs prior to a surgery, for example. It would be interesting to your doctor, perhaps, to know which leukemia (I'm guessing you might be in the U.K. - we spell it differently in the US) your dad and his brother had, but you need to know that treatments for leukemias are improving at an amazing pace. My grandfather and uncle died from leukemias. There were no treatments for their types then. There are three of us in my generation with blood cancers, and one in the next generation. All of us are doing well - 16 years for me and counting.
Take things one step at a time. Step one is to get a definitive diagnosis. Please let us know how things go with that.
Thank you
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