HI, my husband was diagnosed in July as having CLL. We were initially told it was a low grade cancer following a biopsy of a lump in his neck, and referred to a Hematologist. He told us he thought it was CLL but at that point hubby hadn't had his scan (the scanner had broken). We were given an appointment for 14th September as by then the scan results would be in and hubby had to have a blood test prior to this meeting. Then he was asked have a bone marrow aspiration and biopsy at which time he was told this would just be used as a base line for future treatment, and a possible drugs trial was mentioned. Anyway at the appointment with the hematologist yesterday we were told that a meeting to discuss possible treatment hadn't yet been held following results of the biopsy but the blood test results were entirely normal (we have had a copy and all the results are in the right parameters) but CLL was present in the bone marrow. The consultant seems concerned that the nodes in hubby's neck may be pressing on arteries and his although he doesn't have any discomfort, and that for cosmetic reasons they may start treatment.
I am sorry this might be a long winded post, but want to give as much info as we can. Hubby is well, walks several miles a day, drinks 3 - 4 nights a week, more than I would like him to but not so he is 'drunk', eats well and feels absolutely fine. I am concerned because the consultant says he is at stage 4, does this mean its bad? I know the staging for CLL is different than for other cancers, but as far as I can unless the blood levels are affected it should be stage 3? Is it because of the bone marrow, and if in the bone marrow is this bad? Some of the nodes seem large too at 4 cm.
Sorry to witter on, but I think the main worry I have is - is stage 4 and the fact some nodes are large and CLL is in the bone marrow something to cause concern? The consultant seemed to be very cagey and didnt really answer these questions, wanting us to wait until after they had a meeting but the longer time goes on the more we are worried.
There are some lovely people on this website by the way, truly kind.