Not officially diagnosed...in watch and wait - CLL Support

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Not officially diagnosed...in watch and wait

Purplecat1919 profile image
9 Replies

As the title says, I'm in the WW stage. I saw a hematologist 5 years ago about my lymphocytosis and he felt he could not give a definitive diagnosis.

In March this year, I had some stomach issues and bloodwork (above).

A peripheral blood smear was done. Below are the notes:

There is mild

leukocytosis with lymphocytosis The lymphocytes comprise of predominantly small mature forms and a subpopulation with clumped chromatin highly suspicious for chronic lymphocytic leukemia.

I know this isn't a dr site but is it time to visit him again?

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AussieNeil profile image
AussieNeilPartnerAdministrator

From the accompanying report it does appear that you have early stage CLL/SLL, assuming your haemoglobin is also fine. However that should be confirmed by a flow cytometry test. Blood counts only reflect the impact of your CLL tumor load in your blood and bone marrow infiltration. You haven't mentioned any symptoms, but it is possible for the lymphoma aspect of CLL/SLL to remain hidden for years (enlarging spleen, nodes etc.).

You may never need treatment, but perhaps a follow up appointment is worth it for peace of mind?

Neil

Purplecat1919 profile image
Purplecat1919 in reply to AussieNeil

Thank you Aussie Neil! Every few months I will get a big lump in my neck or armpit. I do get night sweats but I'm 52 and menopausal so could be from that.

Purplecat1919 profile image
Purplecat1919 in reply to AussieNeil

AussieNeil My hemoglobin looks good. Posted that part above.

Blood results
Purplecat1919 profile image
Purplecat1919 in reply to AussieNeil

What do these words below even mean? I tried finding on google but I'm getting confused.

There is mild

leukocytosis with lymphocytosis The lymphocytes comprise of predominantly small mature forms and a subpopulation with clumped chromatin highly suspicious for chronic lymphocytic leukemia.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Purplecat1919

Leukocytosis = raised white blood cell counts

Lymphocytosis = raised lymphocyte count

Chromatin is the material from which chromosomes (DNA) is made.

CLL/SLL cells are small, as are mature B cells and the cells are nearly all DNA. Hence "highly suspicious for chronic lymphocytic leukemia.", but as I noted previously, this would need to be confirmed by Flow Cytometry testing.

The important word in the above is mild, so likely early stage, assuming no node and spleen involvement.

Neil

Purplecat1919 profile image
Purplecat1919 in reply to AussieNeil

Thank you so much, AussieNeil! What does the below mean from your explaination....

CLL/SLL cells are small, as are mature B cells and the cells are nearly all DNA.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to Purplecat1919

There are around 200 different blood cancers, of which over 80 are subtypes of lymphoma, one of which you might have, given your lymphocyte count is raised. CLL/SLL is the most common adult Non-Hodgkin's Lymphoma of which there are around 70 different subtypes. lymphoma.org.au/lymphoma-ty...

A flow cytometry test provides a definitive test of whether there's a clonal population present (that is, identical cancerous cells which clone, causing tumour growth). The test does this by checking the surface expression of around 200 different proteins (CD = Clusters of Differentiation) on the cancer cells. It's far more often the case that high lymphocyte counts are in response to chronic inflammation or infection, not cancer.

Prior to doing a flow cytometry test, a pathologist may examine a blood smear to look for telltale signs of cancerous blood cells, as in your case. Per the attached figure, left most image, "At high-power small lymphocytic lymphoma (SLL) lymphocytes are small, with round nuclei and irregularly condensed chromatin."

researchgate.net/figure/The...

CLL/SLL cells (same blood cancer) are shown in the left hand image. You can see that the cells are mainly purple (the chromatin/stained DNA) with very little surrounding pink making up the rest of the cell. Follicular Lymphoma is a close cousin to CLL/SLL, but the cells are larger - there's more surrounding pink.

So this is why your pathologist said about your blood smear examination; "The lymphocytes comprise of predominantly small mature forms and a subpopulation with clumped chromatin highly suspicious for chronic lymphocytic leukemia."

Neil

B cell lymphoma cells have a different appearance (size, nucleus, etc) under a microscope
Purplecat1919 profile image
Purplecat1919 in reply to AussieNeil

Thank you again Neil. Great information!

cajunjeff profile image
cajunjeff

Purplecat, your labs look great fr someone with cll. I hope this is an indication you have indolent cll and will not need treatment for a long time, if ever. Arguably two best tests to predict the course of your cll are FISH and igvh mutation testing, so you might ask your doc about that.

Your platelets look exceptionally strong, which is good. Could you spare some for me? 😜

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