I'm new and just been diagnosed age 46

Hi, I've just been diagnosed with CLL/SLL. I am a 46 year old female otherwise fit and well. Last November I had a wisdom tooth removed. 2 weeks later felt lymph nodes up in back of head and felt like I was getting a cold. Went to GP who told me to go back to my dentist as it must be an infection (I knew it wasn't as my tooth had heeled fine). Dentist gave me antibiotics even though everything looked fine. Then over the next few weeks lymph nodes came up all in neck and under chin, armpits and groin. One side of neck and under chin is still swollen. Got an appointment to see my own GP just after Christmas (of course I couldn't get to see her any sooner!). She felt swollen node in my armpit and referred me.

I've had needle biopsy and PET scan which shows low-grade hot spots around swollen lymph nodes. Haematologist then did indepth blood tests to confirm CLL/SLL. I was expecting to be told which one I had - CLL or SLL. I know they are treated the same, but thought they could determine which one?

Next blood tests in 3 months.

Anyone else out there my age with CLL/SLL?

Has anyone seen a CLL/SLL specialist at The Nuffield Hospital in Guildford, Surrey?

Thanks

12 Replies

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  • I am 46 and was diagnosed in October. Looking back, my first abnormal blood test was 2011. So, mine appears to be a slow mover and hopefully stays that way for a long time. I have no symptoms (except for some minor skin irritations and itching). I am in W&W...no treatment. If you have the SLL version, your blood counts might be completely normal as the cells are living in your nodes.

    My suggestion is to make sure you see a CLL specialist...someone who only deals with this disease. They will be most up to date with the ever changing treatment landscape. Also, don't bother looking at statistics on google. Almost all of those are from an era before the new therapies.

    Don't be afraid to ask any questions here. There are many, many wonderful people here with so much knowledge!

  • Hey x sorry to hear of your diagnosis.. but a huge welcome to this forum of excellence and reality. There are many of us in our 40s/early 50s .. We are with you to support you living well and positively with your blood disorder.

    You will get superb advise from the amazing volunteers as well as support from fellow cllers . Take care. Keep positive x

  • Hi PopEine

    Welcome to the CLL Support group

    I hope that you make good use of the site which is kept up to date on any information developing in the world of CLL, plus the wealth of experience of the members who are only to pleased to help with any questions that you may have.

    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.

    My bloods are also checked, by my GP if I am ill ... colds/flu etc, they like to be on the safe side ... so don't worry if this happens ... it has become the normal way my 'health team' works.

    I've had a swollen lymph node in my neck, the size of a grape for most of thosed years, though in the last few months it has ' disapeared ' ... why I've no idea.

    I had another in my armpit, but again I can find no sign of it ...

    Others will be along shortly who be at the same stage as yourself, or have experienced the same symptoms, so for the moment I would just like to point out the positive in your post ... we always like to hear .... " otherwise fit and well "

    ygtgo

  • I had it too (the CLL part) at your age but it wasn't diagnosed until I was 48. I don't know of any specialists in your area but I'm sure someone will.

    You've had a hell of a ride in a very short space of time!

    Hope you get your answers soon.

    Wishing you the very best.

    Nic

  • Hi

    My husband was diagnosed at 46 a couple of years ago.

    Im guessing you live in or near Surrey.

    My husband is being treated at Epsom Hospital. We also have The Marsden on our doorstep.

    Don't know much about The Nuffield but I'm sure someone here will.

    If you need anything answered don't hesitate to ask on here. Everyone is really helpful

    Maria x

  • Hi there

    I was diagnosed at 47, i'm 49 this year.

    Your story is quite similar to mine except 3 months to your next blood test seems a little long.

    Whilst I have mine every 3 months this is because my counts have massively improved.

    When I first got diagnosed it was literally a few days later that I saw My haematologist who told me what stage I was at and explained that I would go into 'watch and wait'. I would have expected you to have had that experience already but it sounds like you haven't.

    I have found that over here in the U.K.- you need to be proactive in your approach to your cancer diagnosis.

    If you haven't been told what stage you are at I would push and tell them that for your mental good health you need to know your staging as soon as possible.

    That said- don't panic. CLL/ SLL moves veeeerrrrry slowly so if you can't get anywhere with your healthcare team it won't make a great deal of difference.

    My point really is -I've had this nearly 2 years now and I've picked up on a few things.

    I was diagnosed in London and saw a few people there and now I am in Devon.

    Things definitely moved faster in London but in my opinion the admin side of the NHS country wide is very poor.

    If you are expecting a letter - chase it!, if you need something- ask for it! (Firmly)

    If you are not getting the thing that you need - push or if you can't - change doctor / haematologist.

    1 more thing- register for a medical exemption card.( this gives you free prescriptions)

    I am not in treatment yet but I need a lot of help managing the symptoms and this has been a life saver.

    Try and keep calm while you are absorbing everything, you may not believe it but for most of us it does get easier.

    Jamie

  • CLL and SLL are the same disease - but historically were thought to be different because CLL presentation varies so much: healthunlocked.com/cllsuppo...

    I was confused too, when I was given a diagnosis of CLL/SLL stage 4, nearly 8 years ago. I initially had blood tests every month, which gradually stretched out to 3 monthly. I'm still in watch and wait!

    (You'll find other helpful posts in our pinned post section to the right - or down the bottom of your screen if you are using a smart phone or tablet.)

    As you read more of other's experiences in our community, you'll begin to appreciate that while we have much in common, our journeys with CLL can be quite different.

    Neil

  • Neil, thanks for your comments/post. They are always information driven.

  • I'm much older than you I was 69 and I found out I had CLL we found it quite by mistake but it was a great we caught it early after two years of the medication my CAL L appeared to be gone but they told me I had to stay on the medication the rest of my life I guess because it's still stays in your system and I did get off the medication for about two months was rechecked and it started coming back again so we have to do what the doctors tell us to do. I do get a rash on both of my legs get tired but that's the only symptoms that I have . Being positive and looking on life with positivity I believe has a lot to do with getting well and or not making it so bad. I was in the testing program for two years and I'm glad that I did I only got out of the program because I moved out of state. We all have to hang in there together give each other support as far as we can.

  • Which medication are you taking?

  • Thank you everybody, I really appreciate all your support and information.

    I've just had my haematologist's report - mild raised lymphocyte count 4.3, "stage 3A SLL/CLL".

    I've always eaten organic, never smoked and stopped drinking 15 years ago (after had first child)! But I've stepped it up a notch over the last two weeks (my children aren't impressed!) - I've even grown to like green tea! Thinking of cutting out cows milk and switching to goats!? Then just to get even more fit - as soon as I can walk on my strained foot (plantar fascitis!) - very frustrating! :-))

    Thanks again.

  • I am a female and I was diagnosed at age 47 with a blood test. I have not had any swollen lymph nodes, though. I'm in W&W. I wish you the best!

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