I’m a 37 year old male in the USA. I’m married with a nearly 1.5 year old son. And… I think I will likely officially be part of this club soon…
I have a mild case of ulcerative colitis for which I need regular blood counts tests(diagnosed in 2009) but no other major health issues other than anxiety.
First red flag was lymphocyte count of 5.4 in June of 2024. GI doctor not concerned said repeat in 3 months. Everything else was normal.
In early September I tested positive for covid but felt better within a week and did my repeat CBC. Lymphocytes count still high (5.2) and total white blood cell 14.3. Neutrophils also a bit high but everything else normal. Sent results to PCP this time as anxiety started to build. She suggested it was reactive to covid and said retake CBC in 1-2 months along with peripheral smear to check the cell structure. Well, I waited about 3 weeks and as anxiety grew I wanted to check the smear for reassurance everything was normal. Lymphocyte count was 6.0 this time and white blood cell 12.8. neutrophils back to normal and everything else normal. The blood smear showed “lymphocytosis with reactive features.” No other comments. No reference to small mature cells or smudge cells or recommendations for follow up testing. PCP felt confident it was due to having covid recently. Made sense but I was still anxious.
Last month I asked more questions and PCP did an “e-consult” with Hematology to help ease my anxiety. The hematologist also felt Chronic lymphocytic leukaemia (CLL) was unlikely in someone my age with my history and likely reactive as the smear showed. He suggested a repeat of CBC and if count remained over 5 to do flow cytometry.
Took the repeat a couple days ago. Lymphocytes up to 7.3 now and white blood cell 13.9. I left a message with my PCP about getting in to do the flow cytometry and seeing a hematologist.
Feeling pretty anxious and discouraged. Never expected I’d be dealing with Chronic lymphocytic leukaemia (CLL) but it seems likely to me.
Is it typical to have a peripheral blood smear apparently show no signs of Chronic lymphocytic leukaemia (CLL), to indicate reactive, but still be Chronic lymphocytic leukaemia (CLL)? Having trouble understanding that part, yet lymphocyte count keeps going up. From what I read I thought the smear is done first and while not enough to diagnose Chronic lymphocytic leukaemia (CLL) it gives a pretty good idea of either Chronic lymphocytic leukaemia (CLL) or normal/reactive and then flow cytometry is done to confirm if malignancy is suspected.
Hi @Travisgf87 Welcome, I hope you do not need our forum.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 21 years ago and you seem to know far more about it medically than I do. I do realise that in the USA it might be very different, in some ways, than it is over in here the UK.
The problem diagnosing it is that the symptoms are often very generic and all tests are to rule conditions in or out.
Perhaps it will help you to write down all your fears, questions and practicalities and ask your medical team.
For me it is the waiting and not knowing that is so anxiety making.
Please do let us know how you get on and really look after yourself
Thanks so much for your reply. Yes the anxiety is the worst of it by far. No other symptoms or issues but stress is really tough lately and it sure is a struggle. Hopefully will get some answers soon one way or the other!
Hi @Travisgf87 I find Pilates, music and fresh air and walking ( I am a very nosey person) really help my anxiety and stress, oh, and not ‘googling’.
Also Blood Cancer UK has some other thoughts Blood cancer: mind and emotions | Blood Cancer UK
Yes, there is a lot of waiting and not knowing
You say that you do not have other symptoms so live the life you love and love the life you live (Rod Stewart)
Please do let us know when you hear something
Hey there @Travisgf87, welcome to the forum! Like dear @Erica says, hopefully you won’t need us here at all.
Have to say, despite my diagnosis with a blood cancer in 2023, much of the language and diagnostic information about different blood cells and how they interact still makes little sense to me. This can add to my stress so I’ve found it less anxiety-provoking to bide my time and wait to speak to my specialists rather than try to comprehend complex test results, which I’m certainly not trained for!
I’m also in the US and wonder if you know of LLS? They’re the closest equivalent to Blood Cancer UK and I’ve shared a link to their support information where you could ask about your test results from US-based specialists while you await more information.
During this anxious time waiting I’d say, like @Erica suggests, occupying your spare time might help take your mind off your very understandable worry. Hiking and doing yoga helps me, as does less virtuous but equally distracting cinema treats and getting into TV shows. I imagine your baby and partner might be happy distractions too!
In the meantime, while awaiting confirmation, keep note of what you’re worried about and any symptoms that arise. As you hadn’t experienced any symptoms, take that as a positive sign I’d say.
Please keep us posted about how you get on and how test results turn out @Travisgf87. The forum is here should you need it.