What To Ask? And Why? And What Does It All Mean?

Hi Everyone,

Following my diagnosis 17th June 2015, I have an appointment to see my hematologist on Wed 19th Aug 2015. This will be my first appointment since being advised of CLL, I have had my bloods taken approx 6 weeks ago for a genetics test, which I'm guessing I will be advised of the results on 19th.

I really cannot face reading material and some posts, but I want to know more about where I am and going to be in what ever time period. I have been advised that approx 30% of people diagnosed don't ever need treatment, I hope I'm in this bracket, so will my genetics test tell me that?

I know some of 'our family' look out for WBC numbers, others lymphnodes, some ALC...All very confusing especially when you are too frightened to read up on anything as I am and have been doing.

Overall, Please can you advise me on;

1) What I should ask?

2) Why?

3) What does it all mean?

Thanking you in advance to any replies and I will no doubt update you all following my appointment.


13 Replies

  • Hi Unknown-Unwanted,

    A cautious (and warm) welcome to the community. A place none of us would choose to be in, but welcome anyway.

    It is very easy to say the following, however, please believe it. CLL is in general a very slow moving (and for some non-moving) problem. The early days after diagnosis can be very worrying. In reality, try to relax and stay calm and avoid panic if at all possible.

    I will partially answer your questions - but others are better at it than I and I'm sure will respond.

    "Will my genetics test tell me that?"

    Of all the metrics listed in your blood results (WBC, RBC, etc.) ALC or Absolute Lymphocyte Count is the one to watch over time. It is used as an indicator of possible need for treatment if it doubles in six months. However, that is assuming it is over 30 (or 30,000 in some countries - same number). There are a few other important metrics in the blood reports as well that might guide treatment. There will be other indicators outside blood reports as well that will show up such as enlarged lymph nodes. Note, for this to make sense you need another test in the future, relying on just one blood test is not good as you could be having 'an off-day', blood results should be looked at as trends in general.

    The key message from my above paragraphs - don't jump to conclusions in a hurry, listen to your Drs, ask questions and ask here for experiences.

    What does it all mean, well all being well it will be ages or never before you are treated.

    For me, I was diagnosed in June 2012 and due to a number of conditions my consultant and I decided to start my treatment in July 2012. That is an unusual situation you will find if you look around the posts here. I feel fine now.

    Please if you would, share your country with us as some comments will vary by country as approaches can be slightly different.

    Finally, a word of caution, there are all sorts of people out there on the web with strange opinions. My advice would be to keep to a few trusted sources. For me that is the people here and the CLLSA cllsupport.org.uk/ Some people on here such as Chris at CLLCanada have their own sites, which you can get to from here. There are others but I have a life to lead so can't spend all day sorting through the internet.

    Once again, please take it easy and try not to panic.

    regards, rob

    PS: Sorry about the length, I went on a bit.... remember .. try not to panic.

  • Thanks Rob, Country is England, living in the Midlands.

  • I'll add one more thing. Sorry, I just found some earlier posts from you so could have deduced you were from UK if I'd looked further.

    Check out and try to attend CLLSA meetings if possible, there is one in Bristol on 28th September, but they do occur about three times a year normally (Hairbear can correct me if wrong). Details are in the pinned entries up to the right of this screen

    These are well worth attending, some great presentations from leading medical peeps and the chance to 'chew the fat' with other people living with CLL.

  • Thanks, I'm enrolled to attend one in the future

  • Hi UU,

    Following on from Rob's excellent advice, I'll add some points which hopefully help without going into scary territory and when we are first diagnosed, that's exactly how it all sounds. But whatever you read just remember that our CLL profile is unique to us. So 'their story may never be your story!'

    Which makes giving you time scales, expectations and what will happen on your journey very difficult and I sense that's what you're trying to establish. And I see from your other posts you are relatively young for all this and from the UK.

    You mention a 'genetic test' following your CLL diagnosis but as that normally means a FISH test (which is explained in the link I'm posting), I'm surprised because it's not routinely offered in the UK. And certainly not in the early stages. It's a blood test that's often done prior to treatment because it shows up our unique chromosomal profile which includes the deletions that you'll have been reading about. It's a snapshot in time and that can change and evolve but it would give you your mutation status which I understand remains constant. And I apologise for making this sound simplistic to the scientifically advanced in the community.

    If you've indeed had a FISH test, it will reveal whether you have a more or less promising genetic profile (in terms of response to treatment and the type of treatment likely to be successful). If you receive these results, take a copy and the bods who are expert on these things will help you interpret. But remember even these are not set in stone. CLL is much more complex than that.

    Watch & Wait is essentially an extended process in which your specialist obtains a picture of how your CLL is behaving and progressing (or not in many cases). The first consult is basically to set a baseline and decide on frequency of consultation. The link mentions a number of tests that can be done but after 3 yrs I've only had the initial flow cytometry to diagnose my CLL, regular lab tests to look at my blood levels and a CT scan to have a look inside and see how my spleen, nodes and other organs are looking. And a physical exam each time to see if there is any evidence of your nodes enlarging. That's what happens at the regular W&W consults. They also want to see how you're feeling generally and if you have any symptoms like severe fatigue, drenching night sweats and weight loss and recurring infections.

    One of the primary considerations as Rob has explained is how our ALC (absolute lymphocyte count) is doing. It's an important number but it's not the only consideration as an indicator to treatment. Some people go into hundreds of thousands. Others may need treatment with a lymphocyte of 30 if a node presses on a vital organ. That's why it's so individual.

    You could ask basically how your individual profile looks...did the blood tests throw up anything that could give the Consultant an idea of when or indeed if you'll ever need treatment. Ask how long between consults. Admit you're scared. There's no shame in that!

    Here's the link which explains the tests done but remember there's no suggesting you'll need anything other than blood tests for a very long time.


    Hope it goes well. Please let us know and remember to ask for copies of your lab results. Take someone with you who will remember the detail that nerves make you forget. And arrange something nice for afterwards for yourself.

    Best Wishes,


  • Great advise, thanks! 40 yrs old.

  • Hi U-U. I hope that you are picking yourself up a little after your initial diagnosis-you were so scared just like me. I (diagnosed June 1st) felt just like you and went into total meltdown but am slowly (with the help of this site plus a kind, Interested G.P. and a very approachable haematologist) am slowly crawling my way out of the hole. The 'hole' created by this CLL gets no smaller but at least I am able to stand a little way from it now instead of totally submerged. If that makes sense to you.

    If you can, take a look at my posts. There is one there headed 'Haematology question' and you will find some very useful things in the replies that I received.

    I had my first haematology appointment a few weeks ago. I dreaded it! I was fortunate enough to have a very pleasant consultant who treated me like a person, not just a number and happily answered all my questions, however small or silly. She was even kind enough to ask my daughter how SHE was feeling about it all.

    I went looking for answers (as you are) but now accept that there are none. None of us are the same. I wanted to have every test available (FISH, bone marrow etc.. etc..) so that I could assess where I was and where I would be in 10/20 years time. Unfortunately, because there are so many variables from person to person, this is impossible to tell. Our blood results can alter with time and progress at different rates. So whatever we are told now could be completely different by the time we need treatment. One definite thing to do is write your questions down. Then you wont forget anything and if (like me) you cry all throughout the appointment someone can ask them for you :-)

    Where possible, try not to let thoughts of tomorrow spoil what you have today (hard I know, I can't always do this myself). I,m afraid we have to live with this cloud hanging over us, but how much it rains sometimes depends on us. I have very bad days where I feel I can't cope with it. I work full time (and more!) and wonder what the future will hold-but we can't change it so we must try to live with it.

    Wishing you all the best for your appointment. Please let us know how you get on. It's good to share experiences. Even if we just pick up one small piece of advice or knowledge that helps.

    Best wishes. Peggy.

  • Thanks

  • Hi, all the best for your appointment I am recently diagnosed myself and am still trying to get my head round it all, but the support and advice you will get from everyone on this site is invaluable.

    Please let us know how you get on.


  • Ask your Consultant to explain what happens next ...

    a) in regards to your examination/tests and

    b) in regards to what advice he can give to help you with any symptoms of CLL that you might face.

    The haemotologist will probably want to have regular tests to see if there is any pattern in the blood counts, this is standard practice - for me it was every 3 months for the first couple of years, then every 6 months, and for the last 4 or 5 years it has been annually.

    Any minor symptoms will be dealt with through your GP ... but ask if there is a contact in the Haematology Dept that you can use if you feel that you need attention between your Hospital appointments.

    Ask if he has any literature or online sites ... that he would recommend.

    Let us know how you get on ... you will find that the people on here totally understand, and are only too willing to help if they can.


  • Thanks

  • Hi

    My husband is 47 and was diagnosed in January 15. Like you I was terrified of reading too much because the word

    ' Cancer' tends to send you into a default of it's all BAD NEWS. As time goes on it does get easier.

    Take your time collecting information dont overload yourself, there is plenty of time to find out what is happening.

    What I will say is you have done the best thing by joining this forum, it really helps to know there are people out there who can help.

    Research into CLL is really advancing in the UK..YOU ARE IN SAFE HANDS !

    Very best wishes


  • Thank you! Just can't get my head round it.

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