Shocked and a little confused!

I am one of those many people who have been diagnosed by chance. I had an NHS health check and as I am slightly overweight the nurse suggested a fasting blood test to check my sugar levels or anything like that were ok, essentially I thought to see if I was getting towards diabetes. The prick test showed I had good cholesterol levels, 3.3 so that was ok. I got a letter a few days later to say make a routine appointment with the Doc about my test results. I luckily managed to get an appointment next day, didn't want to wait the 2 weeks for a routine appointment at my surgery. I thought I would get a bit of a telling off for taking the appointment for blood test results! The Doc hadn't looked at the results and did it while I was there. He said my white cell count was high and what did I know about leukaemia. Well I was expecting to be told about watching what I eat because sugar was high etc, I thought it was something else that related to leukaemia so I said I didn't know anything. As he explained what it was, it gradually dawned on me he was actually speaking about 'that' leukaemia. I think I must have been a right sight as my jaw dropped open. He said that the test showed I had CLL and that a referral should be made. He was very apologetic and was sorry for giving me the bad news. I didn't ask any questions as my head was in a bit of a spin. I got home and waited for my wife to come in and told her, we both couldn't understand what had happened. This was Friday lunchtime and I had taken the afternoon off anyway. I spent the weekend investigating CLL and what needed to happen. Back to work on Monday and I told a few close friends and my bosses, who were a bit shocked. I did say that I wasn't going anywhere soon, but waiting for the referral to confirm it. As I have no symptoms what so ever I feel a bit of a fraud. I haven't been able to concentrate on my work too long though as my thoughts turn to the disease and what's going to happen to me, will it turn acute at any point? Will I see my grand kids grow up? What will happen to my wife? I'm sure you have all been there. Part of me thinks, it might be a mistake and the Haemo chap will see that, then I think, maybe I'm further into it than I think and won't have long left, then I think stupidly, what about holiday insurance? So many things in my head. I'm hoping that looking through posts here it will help me along the way, there is nothing like real experiences by people who have 'been there'. Its only been a few days and I feel I have learnt so much about the disease, wish I could have learnt like this at school! My background means that I have developed a black humour for these type of things so that may help me in parts. I may have leukaemia, but hey, my cholesterol was really good .

13 Replies

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  • Hi andygm,

    That was a very good description of how it feels like to be newly diagnosed with CLL. I'm sure we can all relate to it, and for me it brought back those terrifying first weeks. I've been diagnosed for two years now. Most of the time I just get on with life, and as time goes on it will be the same for you. Hold onto the word "chronic". This one is a slow grower, and there is plenty of life left in you yet.

    There is much research going on and several positive treatment developments, so the future is looking brighter all the time.

    This community has been a fantastic help to me, and I'm sure it will help you to get your head around your diagnosis, as well as the technicalities of the disease.

    Hang on in there, and know that you have a friendly community that will be with you every step of the way.

    C

  • Hi Andy

    Welcome to the site, though sorry that you had to find yourself here. Your well written post nails the first reaction that most of us will recognise.

    " So many things in my head " ... I remember all too well that my stupid brain went into overdrive and wouldn't give me any peace for a while.

    Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.

    Best not to troll the net, a lot of it is out of date ... any news, treatments or breakthroughs are covered on here.

    First up will be a visit to see your consultant, he/she will explain things to you and normal practise would be to have blood tests every 3 months to let the consultant see if there is any pattern appearing in your blood counts.

    I was diagnosed with CLL aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

    Getting the weight down plus getting some exercise is a good idea as always .... and regular doses of black humour will do for starters.

    Having no symptoms whatsoever is what we like to hear, and don't worry about feeling like a faker/pretender .... there are plenty of us here in the ' fraud squad '

    ygtgo

  • Hi Andygym,

    Take a deep breathe and relax! Your doctor can't diagnose leukaemia from a standard blood test; you need to have a special blood test called a Flow Cytometry test to diagnose leukaemia as well as the specific type of leukaemia. It is possible to have raised white cell counts due to allergies and illnesses, so these possible causes need to be dismissed before checking for leukaemia. I strongly recommend that you tell everyone that you've already informed, that your doctor has been premature in suggesting a leukaemia diagnosis and all that you know is that you have a blood condition that needs investigating. You don't even know yet whether it is a temporary or permanent condition!

    Your doctor has correctly referred you to a haematologist for investigation. IF you do have leukaemia and you are approaching middle age or older, then it is most likely that you have CLL, in which case you've already found a good community to help you live well with this chronic condition.

    Keep us informed how you go with your haematology appointment. I'd also suggest that you take your wife or a trusted friend with you to your haematology appointments, so that you have another pair of ears to catch what's said and take notes. Also, ask for copies of all your test results for your own records and so that you can ask more specific questions of this community later. You might also want to make your posts private to this community only when you are discussing personal information. If you want to change this post to private, just click on the 'v' after the 'Recommend(0) + Follow post' below your post and chose Edit or ask me to do it.

    Neil

    PS Congratulations on that great cholesterol test result!

  • Andy

    As everyone says....relax. As you have no symptoms, even if you have CLL, it might be many, many years before you need a first treatment. You will be an expert before treatment!

    Neil

    Is it right you need a Flow Cytometry test? I don't think I have had one, but then again I might have missed the name. As far as I am aware, I just have 'normal' blood tests. These do look at HB, white cells (lymphocytes and others), red cell count/bili/reticuloctyes, liver function, etc etc. (After) diagnosis I also had a CT scan, but that was to look for nodes. So unless I am mistaken, my diagnosis was purely on standard lab blood tests.

    What does a Flow Cytometry test tell you extra?

    Andy

  • Hi Quarry. I'm fairly certain you would have had a flow cytometry test, but in the confusion of all that's happening in working out what has caused your anomalous blood counts, it would be seen as just another blood test. I've only had two - one to determine my CLL diagnosis and one 3 years later to see if there had been any changes (they were negligible).

    The flow cytometry test looks at the CD markers on your white blood cells to determine what specific type of leukaemia you have. Chaya Venkat describes it well:

    updates.clltopics.org/423-t...

    Once you have a leukaemia diagnosis, then regular blood tests are all that is needed to monitor how your blood is going.

    Neil

  • Wow...I will ask next time I am in (5.5 months) and go back to my original results/notes!

    My first 6 months were very confusing, as CLL/AIHA were talked about as one. Only after 6 months did I start to realise they were different and that the CLL was not an immediate issue, but the AIHA was! So I could easily have missed a mention of flow cytometry!

  • Yes, ask for a copy of your results and in particular check the CD38 result. If that's negative (dim or less than 30% expression) then you have a good chance of having the mutated status of immunoglobulin (Ig) V version of CLL, which correlates with longer time to treatment (and possibly never needing treatment).

    I didn't get a copy of my original Flow Cytometry results, not appreciating their significance, though I remember my haematologist discussing them.

    Neil

  • Hi Andy.

    Welcome to the club no one would choose to join,but couldn't do without now you've found it. Everything you put down there make's perfect sense and you will find masses of information, and more importantly understanding and support from a wonderful bunch of people on here.

    Stay well and keep the humour

    Regards

    John

  • Hi Andy,

    Your description is exactly what happened to me, I was given the news on Valentines day 2013 and went home and I am not afraid to admit I cried with my wife. My doc gave me the news in such a cheery voice and handed me an A4 sheet of paper with some information on it, luckily it had the web address for CLLSA and my learning cycle started.

    My view now is get on with life while I am still well, like you I felt a bit of a fraud feeling so well and good blood results and consultations, don't get complacent though, my forst cold with a chest infection has now become a regular occurence needing antibiotics to clear up. Look after yourself and stay strong

    Kirk

  • Hi, if you can keep a diary i find this very useful noting down doctor visits test results etc. I also write about my feelings and my family. This site is a great with lots of advice and the odd hug on the not so good days. Thake care.

  • Andygm,

    Incredulous as it seems, you will probably be in the Watch and Wait stage. It is a very difficult concept to get ones head around and it will more than likely change how you view and live life. There have been some excellent articles and discussions posted on this forum which have helped me to come to terms with this cancer which for me rolled on top of spinal surgery. For me I cherish every well moment I have and this means the little things and the big things.

    It's a shock for you and your family, knowledge is the key!

    Cheers

  • Hi all, thanks for your replies, very comforting words from you all. If I remember the Doc was passing on the results from the lab suggesting CLL. I am hoping it may be wrong, but your stories have rested my mind a bit, until I know for certain where I am, I suppose I will still be all over the place. Still it's a lovely day and I will look through this site a lot more. Cheers all :-)

  • Hi andygm. Like you, newly diagnosed (routine blood test). You have come to the right place! Here you will find a wealth of information from people who were once where you and I are now. I cannot begin to tell you how much I have been helped by this site. Up to date information and real stories from real people just like you and me. I am sure that you will find it as useful and helpful as I do, a real life saver at a very scary time indeed. Very best wishes to you. Peggy.

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