u/londonbec73

Thanks to everyone who responded to my first post. I saw the haematologist on Wednesday at UCLH and was diagnosed as having CLL. He agree that my other bloods are all stable and examined my lymph nodes and found nothing untoward. So will be watch & wait for now. I am now being passed to the specialist CLL team and will see them when I am back from my holiday at the beginning of August. The haematologist said all my tests hadn’t cone back yet so he couldn’t tell me any more details about the markers etc. Any tips on what I should be asking at my appointment? What else do I need to know at this stage?

Hi everyone,

I’m in the UK and have just been referred back to haematology by my GP because of persistent lymphocytosis over the last couple of years.

Last year bloods were sent to haematology and the blood film report said:
“Normocytic normochromic red cells, lymphocytosis with small mature lymphocytes, smear cells seen. Platelets are normal in number and morphology. ?LPD. Suggest monitor counts every 3–6 months, refer to haem if lymphocyte counts >8.”

My lymphocyte count has gradually increased over time:
Jul 2024: 4.9
Mar 2025: 5.26
Jun 2025: 6.1–7.0
Nov 2025: 6.41
Feb 2026: 6.59
May 2026: 8.16

My total WBC is now 13.2.

The rest of my bloods seem reassuring:
Haemoglobin 145
Platelets 305
RBC normal
Neutrophils normal
CRP normal

The latest blood film again reported:
“Persistent lymphocytosis. Smear cells seen.”

My GP hasn’t mentioned any diagnosis and has simply referred me routinely to UCLH haematology.

For those who have been through this process:
What investigations were done at your first haematology appointment?

Is flow cytometry usually the next step?
If this turns out to be MBL or early CLL, what questions should I ask?

Are there any prognostic tests I should know about?

How often are people typically monitored at this stage?

I’m trying not to jump to conclusions before seeing the specialist, but equally I realise the lymphocyte count has now crossed the threshold that haematology previously set for re-referral.

Any advice on what to expect or what you wish you’d known at this stage would be appreciated.

Thanks.