I have my first appointment next Tuesday with a Haematologist. I had Bowel surgery on 30th June for a stricture and now have a permanent Colostomy. Biopsies were taken and lymph nodes sent off for histology. The provisional diagnosis is CLL/SLL. I had a CT scan 2 weeks ago and the appointment next week will be to discuss results and ? whatever else. Over the last 6 months I have been in hospital twice with Bowel problems, had numerous blood tests and all normal except for inflammatory markers which were to be expected. I need to know what questions I should be asking when I see the Haematologist next week.
Is anyone able to give me some pointers please x
Written by
Jam53
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Welcome to the club none of us wanted to join. It is difficult to accept our diagnosis, and many of us need 6 months to 1 year for the panic to subside. But most of us have plenty of time since treatment in the first few years after diagnosis is rare. So take a breath, try to relax and read on.
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There is a Pinned Post designed to answer your question:
In order to ask questions and understand the answers one has to learn a few things about this disease. Check out the CLL for dummies series by cajunjeff.
As you have normal blood counts but enlarged lymph nodes you may have SLL (Small cell Lymphocytic Lymphoma) it is essentially the same disease as CLL but instead of elevated white blood counts the malignant cell accumulate in the lymph nodes. Treatment is the same as CLL but monitoring progress is difficult. When you see your consultant I think you need to find out if you have CLL or SLL and if it is SLL then he/she needs to explain how they are going to monitor progress.
Thank you Jacques, I will definitely ask the questions. I have read an awful lot about CLL/SLL but the majority of information is about abnormal blood counts. I’m still trying to get my head around the diagnosis and how I will be affected.
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