How do I find a CLL Oncologist specialist near... - CLL Support

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How do I find a CLL Oncologist specialist near me ( UK)

Obiecat
Obiecat
17 Replies

Hi I am currently waiting for results of a flow symmetry - nearly 4 weeks from the John Radcliffe - very anxious as I was told they should be back in around 2 weeks, but i have had nothing back yet. I have had 3 full blood counts and my white cells are very slowly increasing but just over normal at 11.5 . There is a family history of CLL or something similar - my father was 96 when he died - and he was told he had a very slow growing blood cancer, but I did not have any further details as he was not treated. I had not been feeling very well for some time, a bit sick, sweaty, headaches, dizzy, and was very ill with pneumonia in Feb, I had to have 2 rounds of antibiotics as it would not go away. I went for a routine blood test to see if perhaps my thyroid was not working properly - everything came back normal except for the wbc this was back in July and still waiting for a proper diagnosis. I am 59 and very healthy. My GP has mentioned the possibility of CLL. Why does the blood results take so long! I have phoned my GP twice and she was going to check yesterday - I called again and nothing on my notes and she is not in. I am really anxious. What should I do next? I'm not sleeping with worry.If I have been diagnosed with a blood disorder what further tests should I ask for? I have private medical cover. Who are the best CLL specialists in the UK. Thanks so much - I am hoping it is nothing.

17 Replies
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Shedman

It is very easy to relate to your distress.. Such a diagnosis is not a trivial change to ones life.

That it is taking so long.. Unsettling, but perhaps 1 more week is the trick.

One would suppose that your case has been affected by staff holidays to some extent, maybe.. or it is simply taking time to get the definitive answer.

If it is this typically very slow cancer with the very many new treatments that have been developed and approved over the last 15 years, then keep in mind things are better for us than our forebears - and some people never need treatment; blood counts can be over 200,000 without need for treatment (white cells can be very very small)

My uncle had a similar cancer - familial? Who can say. But all those years ago and treatment options were not alike today.

I'd give some time to doing normal things and to some relaxing activities - nil to gain from getting distressed prior to receiving the blood diagnosis.

Others here will help with consultant information, but preference is to first have the actual diagnosis, since there are many similar conditions, but in this very wide field - consultants handle only their part of the spectrum blood disorders.

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Sepsur

It’s very difficult to sit in limbo. I was in ICU when they diagnosed CLL or rather, they thought it was AML. Because most of my bloods were pretty normal ( neutrophils, not). They felt that my CLL was coincidental because it was so early stage. From my CLL specialist, 2 yrs later, we put a more viable picture together.

With regards to recommendations of specialist, there are so many other blood cancers that manifest similarly that until you had a proper diagnosis ..................?I know my specialist does do private consultations Adrian Bloor out of Christie’s Manchester.

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JigFettler
JigFettlerVolunteer
in reply to Sepsur

I've met Adrian Bloor. Very impressive dedicated CLL Dr.

Jig

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blowinginthewind

Adrian Bloor is my consultant too, he is excellent - and Christie is a 1st class cancer centre. And Christie treat the whole patient; new symptoms will be checked properly instead of assuming that they must be to do with CLL. That is really important. I know a person who died of rampant level 4 cancer, metastases everywhere. She had another medical condition and doctors put all symptoms down to that other disease.

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AR0613

Dear Obiecat,

Waiting for those initial test results and then the follow up appointments is such a stressful time. You mention the John Radcliffe hospital so I assume you are in Oxfordshire? The Churchill hospital just down the road has an excellent haematology / oncology centre and a fantastic team - including CLL specialists. Anna Schuh is world class.

Good luck and let us know how you get on.

Andrea

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JigFettler
JigFettlerVolunteer

Hi!

You are experiencing great uncertainty. You need to know. As you are in the UK, and not yet have a Haematologist, your GP is the one to put pressure on. She should sort this for you. She could easily contact the lab and ask for the tests status.

If your GP is questioning a blood cancer you should be getting a 2 week wait referral asap, to a haematologist. Mandatory. From there you get your diagnosis. Then you get your 2nd opinion from a CLL super specialist. There are many in the UK who are very good.

Keep in touch! There many expert patients on this site, most of the issues with CLL have been encountered by one of us.

Welcome to the club btw! 😊

Best wishes

Jig. UK.

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devonrr

Don’t panic!

CLL is a waiting game but it’s probably the word Cancer that has put you into the state of worry. Start to think Chronic as our disease is.

I’m surprised that In the U.K. a wbc of 11.5 is causing any CLL hospital referral as often GPs manage this till over 30.

I was referred at 200!

On this site we get those from the USA with treatment started when blood counts are just above normal but in the U.K. we achieve high numbers as long as we have no B symptoms. U.K. outcomes are the same.

When the GP suggested to me that I might have CLL it was the thought of treatment that scared me most. Been there, done that. Won’t be scared again.

Hopefully you will get your results soon and then you can relax and with a healthy diet and exercise to be many years off any treatment.

It is a fact that all CLLers are different in there Cancer journey but remember we have a CHRONIC disease. A waiting game.

Best wishes

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Root65

Hi Obiecat, I am 53 and have only been diagnosed a few months and the uncertainty and fear you are experiencing is still vivid. From the first blood test, then biopsy on node, then flow test took over six weeks. It hard to reconcile your need to know and the lack of clinical urgency expressed by medical professionals. I sense this perceived missmatch will continue throughout my jouney. My symptoms are now very pronounced and I was told I needed treatment a month ago, the base line tests needed have taken weeks and I guess at another 2 weeks before I see actually medication. It takes time to find a balance, I'm not there yet, between advocating for yourself and accepting the slow pace of the disease and its corresponding treatments, which is often nothing for many years. I found things much easier once I went to local cancer support drop in centre, mine is the hospital grounds. I spoke to a specialist nurse there who soothed my anxiety so much, along with this site, it will be my safe place from now on. Let us know how things go please, take care of yourself.

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Jm954
Jm954Administrator
in reply to Root65

Good luck Root65.

I see you're going to take part in the FLAIR trial and we have lots of members who can share their experiences with you.

Jackie

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Root65
Root65
in reply to Jm954

Thank you, still in a void as I don't know which arm of the trial it will be yet. Like waiting on results to some kind of weird lottery, our paths are truely held in the lap of the gods 😉

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Big_Dee

Hello Obiecat

Not easy, but I would suggest you relax until blood tests come back. With WBC of 11.5 you are long long ways from needing any treatment if you in fact have CLL. If the blood tests come back as positive, then you can kick in the watch and wait. Blessings.

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4Glory

Hi Obiecat! I know the waiting is tough but when I read here that someone else's flow test took 6 weeks, then perhaps that's what's happening. In the meantime, by all means make those follow up calls, but don't miss LIFE. We're fully alive and want to take advantage of that and the fact that you are healthy right now. Please keep us posted! :)

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Billhere

Obiecat,

Most CLL is chronic and not acute which is good like your fathers story. Waiting for results is a bed of nails but there’s always solutions and CLL is one of the cancers with a good number of drugs and treatments.

Stay strong.

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Quarry

It sounds like you have not yet been diagnosed with CLL. It you have a disease, your whites will be up anyway (they are the army fighting what you have eg pneunomia). So still really remote that you will end up with a CLL diagnosis. However, odd bloods not back (they can be done in a few hours). so keep hassling your GP

Only a weak family link with CLL, so please don't assume anything from your dad. In the worst case (probably pretty remote case at this time), if you are near Oxford yor GP will refer you to Anna Schuh who is a leading specialist (at Churchill Hospital). Even in the worst, remote case you have CLL, your whites are very low and you might not need treatment for 10s of years, if ever. It can be a very slow moving disease and even if not, there are many treatments available. Don't Panic as Mr Jones would say!!

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Oleboyredw-uk

Hi Obiecat, I appreciate how difficult it is waiting for results, they do sometimes take a while. Whilst I am no doctor my understanding is that below 30 in general you may be on watch and wait. When diagnosed in 2012 I had a lymphocyte count of 62 and that was not the thing that triggered treatment. I think you are right to push for the results.

My consultant is Dr. Bloor at the Christie, however, that is a long way for you if I interpret your location correctly (somewhere in Oxfordshire). There are a number if good consultants much closer. For example Dr. Anna Schuh at Oxford. There are others that I can think of nearer than Manchester and no doubt some I don’t know of.

I hope things go well for you.

best, rob

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Obiecat

Hi everyone thank you so much for your kind replies, not great news, I have finally had the flow results. My Gp told me them over the phone and I asked for a copy of them.

They are "B Clone cell detected, approx 39% of the lymphoid population - (bloods from 22nd Aug) Positive for Kapp CD19, CD20, FMC7,CD79b, Negative for CD5,CD10,CD23,CD200,CD38, Igm,CD11c,CD103,CD25. Consistent with Low grade B cell NHL ( Non Hodkins Lymphome) Then states - Immunophenotype most consistent with MZL ( Marginal Zone Lypmphoma, and LPL type - not sure what these are but both quite rare.

Bloods increased late aug to 12,300 so rising steadily. My GP thought I could be fast tracked ( my stomach is swelling and I have a stiff neck on one side) but was told it would not be fast tracked so I have no idea of treatment, further tests etc. Very lucky to have private cover, so I will be going private so not to wait and agonise - is there a forum for NHL? Again - love to have a recommended specialist.

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AussieNeil
AussieNeilAdministrator
in reply to Obiecat

You might like to check out these two HU communities:

healthunlocked.com/non-hodg...

healthunlocked.com/leukaemi...

I hope that one of these communities can help, if not, you may find support from a non-HU site, but it is more likely to be non UK based.

Neil

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