Newly diagnosed ?

[pet-lamb]

I've just seen my GP.and been given this letter .I have had an examination but I'm asymptomatic so waiting a appointment with the haematologist .failing that I'm to have 6month check ups .any advice will be appreciated .sorry about photo it's on my kindle

[Ironj]

Hello pet-lamb.

If you do have CLL it’s typically a very slow moving blood disorder. What test have they done on you to make this conclusion ?

[pet-lamb in reply to Ironj]

Hello I have had 3 blood tests this year because of raised lymphocytes today my GP have me that letter and examined me for swollen lump nodes spleen and liver .I've agreed to 6 month bloods and doctors consultation at my doctors if haematology refused my doctors referal.I understand that further tests are needed for a positive diagnosis but so far this is what I have

[AussieNeil Administrator]

I appreciate that you have been wondering for some time whether you have CLL/SLL. From this letter, there is still not enough information to know your actual diagnosis. As you have been correctly informed after your earlier posts here, you specifically need to have a Flow Cytometry test to verify whether you have a monoclonal population of B-cells. Perhaps you have had that test, but you need to verify that.

If you have had a flow cytometry test confirming you have a monoclonal population of B-cells, (which seems to be implied in this letter), then because you have a low lymphocyte count, the next part of the diagnostic process is determining if you have Monoclonal B Lymphocytosis (MBL) or CLL/SLL. If you have any B symptoms, then your diagnosis would change to early stage CLL/SLL. If you have MBL, then there's a 2% chance per year of MBL progressing to CLL/SLL.

This whole process is stressful, but you have already found a great, supportive community very early on. If you end up with a confirmed diagnosis of CLL/SLL, then should you eventually get to the stage of needing treatment (which is not given), I expect the treatment options by then will be curative.

Neil

[pet-lamb in reply to AussieNeil]

Thank you Neil I'm finding it very confusing I thought that the letter was vaugh at once hintting at Cll but not confirming it .and after the doctors appointment being told they were happy to refer me to hematology and giving me information to look up Macmillan cancer support I thought well it must be cll. As for the tests the doctors only said that they had sent hematology the further test they wanted .unless she ment more bloods for them to test . Oh yes she did say it was b cell and and when I asked what level it's at meaning 0 A or B or C she said it didn't say .

[AussieNeil Administrator in reply to pet-lamb]

The other symptoms you might have as outlined in the letter, are what will determine your stage. If you are confirmed to have MBL, you aren't even in stage 0 or A CLL/SLL. This is a chronic illness and typically goes for years undetected. Nearly all of our community members join many years further on from where you are now. It's very rare for CLL/SLL to be picked up this early if you actually do even have it.

[pet-lamb in reply to AussieNeil]

Thanks Neil it's good to know that if I do have it it's been picked up at such an early stage .my lymphocytes count has been jumping around since at least 2017 when it was 4.2 reference ranges are 1.5-4 here .since then it's dropped and risen several times.This year it's gone from 6.? To 7.7 To To 9 .? I don't have the results with me sorry.

[AussieNeil Administrator in reply to pet-lamb]

The absolute number is less important than the number of clonal (i.e. duplicate B-cells as determined by the Flow Cytometry test), as that's what defines a proliferative disorder, either the sometimes precursor to CLL/SLL (MBL) or actual CLL/SLL. The lymphocyte count includes healthy B and T cells, which can be at raised levels due to (in your case presumably chronic) infection or a proliferative disorder. Those clonal cells have to account for more than 5 of the total count for a diagnosis of CLL.

[pet-lamb]

Thanks scottxxoo yes very vaugh letter confusing.

Doctor did say they'd sent something to hematology they'd asked for but didn't say what it was. So yes might of had that test done if it's done with blood.I have no idea of how it's done .given that letter and a printout of Macmillan cancer site and encouraged to look them up made me think I had Cll .Doctor going to ask hematology to see me and take over my care she doesn't see why they wouldnt.but if it's too early in the diagnosis or stage apparently it's so new I don't have a stage yet (so that's got to be good) my doctors will give me a 6 monthly blood tests and reviews .

The doctor expect to hear from hematology again within a month but if not I'm to see the gp again.so I won't get any more information from them for at least a month .so I'm thinking of phoning the Macmillan nurse to see what she says.

🤔 lamb chops??? message in confused

[pet-lamb]

😀😀😀 no no one I knew hope you enjoyed it