Finding a CLL specialist?

[debs24]

Hi all

As I've only recently been diagnosed with CLL I really thought my treatment path was pretty much dictated to me - i.e. the doctor I saw at my local hospital is the same person who will lead me through the rest of the CLL maze!

I am a bit naive/inexperienced when it comes to the world of healthcare but is it possible for me to ask to be referred/seen by a CLL specialist (I'm assuming the doctor I've already seen at my local hospital is not a CLL specialist but I've only spoken to her for 15 minutes and, to be honest, I wasn't really aware of what to ask her!)?

I have read that there are advantages in being seen by CLL specialist, as opposed to a cancer/haematology specialist, so it sounds as though this may be something worth persuing.

I live fairly close to the Christie hospital in Manchester where I guess I could locate a CLL specialist - I'm just not sure how to access their services (or even if it's possible without a referral)!

Any pointers/advice/experiences would be, as always, much appreciated.

Many thanks.

Deb.

[ScruffyDuck]

I did just that when my specialist retired. There are CLL specialists and there is one in Manchester. CLLSA used to have a list of specialists but they dropped it for reasons that I don't know. I did some research and found my specialist at Liverpool. I asked my GP for a referral as a second opinion - which might be a good way to start - and then asked if he would take me on. Fortunately he said yes and I am very happy. The CLLSA web site has a number of webinars and videos about patient meetings and these will tell you who is who in a given area. The recent one in Liverpool had my specialist and one from Manchester who seems to be very well versed on CLL and how to manage it.

So to summarise - first find your specialist. Then ask either your GP or your current consultant for a referral as a second opinion - you are entitled to one of those under the NHS I am sure. Sometimes the CLL specialists will act as a backup to your own consultant also.

Dunno if that helps

[debs24 in reply to ScruffyDuck]

Hi

That helps enormously - thanks very much!

I realise we're currently pretty much stuck with our CLL once we have it but, until a cure is available, I'm determined to be as proactive as I can in making sure I manage my condition as much as possible!

Thanks very much for your advice - I'll be speaking to my GP as soon as possible for that referral! 😊

Have a great weekend.

Keep well!

Deb.

[ScruffyDuck in reply to debs24]

You are welcome. Of course we have to learn to live with CLL. I was diagnosed in 2012 and have been on wait and watch since. It can be frustrating to be told on the one hand that you have cancer and on the other that they are not going to treat you. It is one of the most common adult leukaemia I think but even then there are not that many new cases each year (between 3,000 and 4,000 I think) so many doctors are not that familiar with it. I think many CLL patients will know more about it than their GP - I know that is true for me and my GP is very good. The CLLSA web site is a good source of information but in the end the main thing is to be aware but certainly in the early stages not let it get in the way.

Take care

[dou123 in reply to debs24]

Hi debs hi was diagnosed with all 2011 had treatment stayeda way 18months came back was treated again did not work as well this time court pumonia then was told about a trail going on at the christe hospital in Manchester a new drug called apt 199 clad I did I'm in remission now my consultant was named Dr bloor brilliant Dr and a I would recommend the christie to anyone lovely hospital they can't do enough for you ring them up or tell your go to referr you if yo go on daily mail web site my story is on their ok good luck Doug

[Hidden]

I would most Drs don't know there arse from there elbow

[mush56]

hi Debs I was diagnosed this year from a blood test taken in 2009 when enlarged nodes were detected in my 3 yearly breast screening , I have a ill mannered haematologist with no bed side manners that is very rude so after being on here and speaking to people I asked my Dr just 3 weeks ago to refer me to Professor Andrew Pettitt at Liverpool hospital( I read up on him on line ) and received my appointment yesterday for the 27th may , im now writing my list of questions as the 1 at Lancaster Hospital has told me nothing other than the Wait & Watch . You have a right to see who you want Good Luck julie

[ScruffyDuck in reply to mush56]

Andrew is my specialist and he is very good

[j3042]

You may need to ask for a referral from your current haematologist rather than GP. S/he cannot refuse. I am in Greater Manchester and did that.when my symptoms became severe and no treatment was forthcoming despite them. Very glad I moved to Christie's.

[debs24]

Morning everyone!

Thanks for all your input regarding CLL specialists - it's just proved to me how much I don't know!!

I'm so glad I asked the question, otherwise I'd simply have sat back and waited for my next 15 minute session with my local haematologist (the same one that told me my lymphocyte count didn't show up on my blood test results because "the machine was happy when it found high white cells....It doesn't bother fiddling around to separate the types of cells"....!?).

Your information and advice has spurred me into action (or at least it will tomorrow when everyone is back at work!). I'll be making an appointment with my GP to get that referral to a local(ish) specialist!

I can already see that this site and its fantastic members/contributors is going to feature highly in my CLL life....and I'm already grateful for that!

Ok....it's a bit cloudy out there but it's still a beautiful world. I'm going to get out and forget my CLL for a while - life can be too short, as we are all only too aware, so I'm going to grab what I can and enjoy life!

Hope you all enjoy your day, wherever it takes you!

Thanks again...

Keep well.

Deb.

[ScruffyDuck in reply to debs24]

It is a bit cold and windy here in Wales but it is still a beautiful day - enjoy

[ScruffyDuck in reply to debs24]

There is something else I just remembered which might be of interest and comes from Andrew. That is what to ask your specialist to see if they are on the ball with CLL.

The first is to ask them to explain 17p deletion, and the second is about access to clinical trials.

One of the important things for CLL patients is access to clinical trials - there are a lot going on since there are a number of new treatments, CLL specialists will know all about these and who is running them and will be able to access them.

Do a search on CLL 17p deletions since my understanding is that it is an important marker for early treatment. I am not a medical professional so that is my understanding.

[debs24 in reply to ScruffyDuck]

Hi again, Scruffy Duck.

Thanks for the "top tip" - I will definitely do some homework and make sure I'm armed with some key "test" questions once I get to see a specialist!

Thanks again ☺

Deb.

[HappyDave]

Deb

Please let me know how you get on. I am exactly the same position having been told lots of different things by lots of doctors at my local hospital so much so that I am confused. One told me I needed to start treatment and the other that I did not. God knows who is right and I suspect I maybe meeting my maker sooner rather than later. If I don't get this right.

Watch, wait and worry is frustrating I know but like you I do need some answers.

Best of luck

Dave.

[debs24 in reply to HappyDave]

Good morning, Dave.

Hope you are well this morning.

Just a quick note to say I will definitely post updates here regarding my efforts to access the services of a local CLL specialist - fingers crossed, eh?

Watch this space! 😉

Keep well.

Deb.

[ScruffyDuck in reply to debs24]

Hi Deb

How are you getting on?

[debs24 in reply to ScruffyDuck]

Hi

Thanks for asking!

I've only managed to get as far as making an appointment with my GP, who I plan to ask for support with a referral to my nearest CLL specialist (at the Christie Hospital in Manchester).

Like many people, I have to wait for an appointment and the soonest available date (for both GP and me) is 2nd June (!).

I'll be able to update you when I have some news...fingers crossed!

Hope you are staying well.

The sun is shining on us here - hope it's shining on you too! ☺

Will keep in touch.

Debs.

[debs24 in reply to ScruffyDuck]

Hi again

I was just wandering through some of my older posts and spotted this exchange of comments (when I was asking about access to CLL specialists) from some time ago.

You asked how I was getting on, back then, but only today have I heard from a CLL specialist at the Christie Hospital and I have my first appointment later this week!

I've been plodding along on W&W, with steadily increasing white cells (ALC now 119) and enlarging nodes - no weight loss or night sweats - still going about my normal daily life and feeling fine. I've been visiting my local hospital haemo team for 2/3 monthly check ups but have seen 3 or 4 different docs...whoever is on duty on the day! The last doc I saw suggested he'd refer me to an expert after I asked the question - seems he was true to his promise! So...it's taken a while for me to get to the specialist but, it seems to me that I'm being referred at the right time - let's see how things go from here!

Hope you are well.

Take care

Debs.

[wroxham-gb in reply to debs24]

Good news Deb24. Let us know how you get on.

Sue uk

[Peggy4 in reply to debs24]

Great. Update us please

Peggy

[ScruffyDuck]

June 2nd is not so far off now. I hope all goes well. Sun is shining here in the Welsh hills

[Uplawmoorlass]

Just found this. How did you get on after your referral to Christie’s?

[debs24 in reply to Uplawmoorlass]

Hi Uplawmoorlass.

Well, I can report that my move to see a specialist at The Christie was absolutely the best move for me!

My WCC continued to climb steadily whilst on w&w, but I'd been referred to Dr Adrian Bloor at The Christie and he was on the case!

He referred me for the usual FCR treatment (standard in the UK) but, following a rocky start, he decided to move me on to Ibrutinib, which is where I've been since June 2017! My blood test results have consistently been in the normal ranges and, apart from my regular checkups at The Christie, I admit I don't often think about my cll on a day to day basis.

Dr Bloor has already suggested that I may be in a position to start taking a break from the Ibrutinib soon, which I'm more than happy to try.

I am very happy with the treatment I've received from The Christie and have every confidence in my consultant. The hospital is an amazing resource and I know that I'm very lucky to be able to access the services there.

How are you doing? Hope things are going well for you.

Debs🙂

[Uplawmoorlass]

That’s really good to hear. I’m just newly diagnosed after a bit of a rollercoaster. My raised lymphocytes were picked up by my go in Dec 19. I was referred to haematology but appointment made for March was subsequently cancelled and it wasn’t until October that I was seen. The haematologist told me he thought it was CLL but my bloods would be analysed at a lab in Liverpool for markers. Three weeks later I was told it was CLL but Mantle Cell Lymphoma and that I was to have a ct scan. When I saw him in December he said it was definitely MCL but that I only had small nodules in my chest. He wanted me to then have a bone marrow biopsy for staging although he did say it was probably Stage 4. I asked for detailed results but he said I’d get them after my bmb and discussion with MDT. My bmb was booked for 21st December then cancelled and eventually I had it in early January. On 4th Feb I got a phone call from the consultant to say it wasn’t MCL after all but CLL stage A. He said I was to have bloods done and see him in 3 months. I was so surprised I didn’t really take it in but now want to know what markers they didn’t find initially, why he said it was MCL and now what the markers are for CLL. I just feel I need to get a second opinion now and need someone to take the time to explain my results to me. Hence my search to see if there are any CLL specialists nearby. I live in Cheshire x

[debs24 in reply to Uplawmoorlass]

Blimey....you've had a "messy" journey to get to where you are now. Things will get better!

My CLL was spotted by my attentive and proactive GP, like yours, and I was then referred to my local hospital. While the hospital was ok, I found I didn't get answers to some of my more detailed questions and, to be honest, got a little frustrated. My move to The Christie was a great move - they have more specialists and experts in our condition than the under-pressure staff at the local hospital.

You aren't far away from The Christie - I would definitely recommend you ask about a referral to them. They are, after all, a world renowned cancer specialist hospital and have great facilities as well as expert docs.

In my experience, my consultant has been very supportive. He treats me like an intelligent adult and seemed to appreciate the fact that I'd done some homework on my condition and had questions for him. It's true that "smart patients get smart treatment" (or something like that!) - get yourself in front of a CLL specialist and don't be afraid to ask questions!

I found that I was in shock after my initial diagnosis, then spent some months reading and researching CLL as much as I could. I found myself a CLL expert consultant and also this forum with lots of other people in the same boat as me and, since then have settled into living with my condition. Once I felt I had some knowledge and support, both from my peers on here and from the experts at The Christie, my CLL started to be less scary. I live a fairly normal life and, although the reminder of CLL is never completely absent, it really doesn't surface much any more.

My advice would be to educate yourself about your CLL, gather your questions, and get yourself a referral to the fabulous Christie hospital if possible. Ask your questions, use the extensive knowledge and support of this forum, and you'll start to feel more confident and optimistic. Please be assured that things will get better!🙂

Please let us know how things go.

Keep in touch!

Debs.