Just a question really, has it happened to anyone!
Got my diagnosis a year and half ago CLL, never seen the specialist in all that time, got the diagnosis over the phone and had two other calls since then.
On my last call he wrote me off seeing him and put me back under the care of the doctor he did tell the doctor what to look out for, he said it was because my blood results were good, lymph 25 platelets 180 .
Has this happened to anyone else.
Donnax
Not sure as your healthcare systems is different from mine, but upon stable diagnosis, I still see the hemo/onc at regular intervals.
Regarding specialist, that won't happen with me until I leave W&W status, as my local is an affiliate of a major cancer institute, I'll be referred at that time.
Have you searched or do they place you with a specialist, would be my question.
🙂
It was my doctor that had been watching the white blood cells, he was a new doctor to the practice at the time so sent me to the Heomotology to have them check it out, i used to tell him what he wanted to know and he would write it out all wrong anyway,
When and if it gets worse i will be asking for someone different.
Ask your doctor to refer you to a haemotologist.
that was him, will be asking for a new one I think. I never even saw him, he never did any tests nor had any injections or scans that he told me i would have when i was first sent to him. 🫣
Definitely change your doctor. Some of these doctors are incredibly insensitive to their patients.
Maybe the job desensitises them......
I asked my doctor to refer me to the cancer centre at Guy's hospital (London, UK), he had no qualms about refering me.
Good luck🤞
Im in Notts so under Bassetlaw, think i need to find which hospitals have cancer unit, there are a few hospitals near.
Specialists will be at Nottingham City Hospital. Lincoln seems to have a cancer unit.
Thank you was thinking it would be Nottingham or Sheffield there is a few hospitals at Doncaster too
Sheffield. Map shows Bassetlaw treatment could be at Doncaster Royal Infirmary.
westonparkcancercentre.nhs....
There is a few different hospitals at Doncaster, they sent me to Bassetlaw hospitals in worksop which is where this specialist was Heomotology, wasnt happy with him from day one.
Hi,
I am also in Notts. The haematology team are situated in the City Hospital (not QMC). I was diagnosed January 2014, still on W&W. Never met a consultant in person, except at diagnosis.. always on phone. Eventually referred back to GP for regular monitoring, like yourself, also because my numbers are 'good' and very stable. I have a FBC every 6 mths, but I'm told it's unlikely I will go on to need treatment..
The City hospital has an excellent reputation for haematology, by the way. Helen Knight is the CNS I've dealt with, and she's great. Often gives talks at places like leukaemia charities. I feel certain she'd be happy to talk to you if you have questions.
Hope that helps. Good luck! x
Hi ChristyAnne thank you for that, not sure how far that is from me , im near Doncaster, but its not a problem as my husband has a car, so could easily get there.
I've not looked it up, but I think City Hospital may be closer to you than it is for me.. I'm closer to Grantham, which is where I asked my GP to send me for my initial consultation, but that was before I understood the importance of the specialists.
Prof Chris Fox used to be at City (don't know if he still is), and they have a dedicated in-patient unit. Worth checking into what they have at Doncaster, though.
Find the nearest hospital with a CLL specialist, if you ask on here, someone will recommend a suitable place. Ask your GP to be referred there. If they ask why (none of their business really) - just tell them you want and deserve the best care possible. Once they see you for your first appointment, they will continue to see you as often as they deem necessary. It will be helpful as if you need treatment in the future, that's the place you will have to go to anyway. CLL treatment cannot be delivered in every hospital and by every haematologist. It will be good for them to know you and you to get to know them too.
It looks like Doncaster or Sheffield is the nearest to me. Will ask doctor to refer me to one of them, got to be better than the last one.
I’m in Bassetlaw and am under Dr Gbemre, a haematologist from Doncaster Royal Infirmary but he has an office at Worksop. Can’t speak more highly of him through my w&w and treatment at DRI
Hi Colin
Thats is who I'm under or was until he sent me back to my gp, have you actually seen him? he just rings me, gave me my diagnosis over the phone writes things down wrong, last conversation lasted about 2 mins.
Yes I concur with the others, find someone good now. The lack of communication is enough of a reason because you want a good fit for your journey ahead. #GODSPEED🙌🏾
find the best CLL specialist in your area otherwise you are in danger of being marginalised with comments like “Your cancer is the best one you could have”.
He did say something very similar to them words actually, as well as fatigue is nothing to do with the CLL its got to be something else.
Yikes! 😬
oh and I’ve even been told, “ don’t worry, it’s only a chronic condition, a bit like diabetes”
Haha Sepsur, my GP in NZ (many many years ago) said 'Don't worry, it's like having asthma !!"
Its alright them saying dont worry lol.
The last phone call dont even think he was on for 2 mins, he didnt even explain the blood tests just said they were stable , handed me back to GP and recommended blood tests every year.
My GP was surprised to find that haematology didn't want to see me once they'd reviewed the test results, and sent her the diagnosis. I asked to be referred back and I got discharged back to my GP after one appointment, I was also told that the fatigue was not related to the diagnosis, and they expected not to see me for 10 years. I'm considering a PALS complaint because the NHS protocol is access to a specialist nurse from diagnosis onwards and you can't see the nurse if you've been discharged from haematology.
I can't give you any suggestions as to what to do next but I'm in the same boat, NHS Haematology consultant isn't interested and says the fatigue is nothing to do with the diagnosis, which he has described as "indolent" and "incidental"
My GP was surprised too could see it in his face, the fatigue was bad at the first diagnosis not too bad at minute.My results have gone down dont know if its anything to do with different diet as been eating for pre diabetes.
I think you are being short changed.
I have a specialist nurse from the haematology/cancer centre at Guy's hospital (London, UK). She gave me her card with her contact details on. Not that I have ever needed to contact her, as yet.
Have you called the haemo unit and asked to speak with the CNS? It never hurts to ask.
I was referred back to my GP a couple or so years ago. but my CNS in Nottingham made it clear I could always call her if I have any questions (and I have). For example, last year, when the NHS changed their guidance on masking for staff, I called her to ask if there was any documentation she knew about that I could carry with me to appointments in other departments, to support requests for staff to mask-up. She wrote an open letter for me to carry. I've never had to use it, as nobody has ever refused a request to please mask-up.
Anyway, might be worth a try. They'd probably be happy to hear from you.
The specialist nurse said "I won't give you my details because I retire next year and you won't be speaking to the hospital for at least 10 years"
I'd love to have her certainty.
Charming person. Such empathy. Oh, well.. it was worth a try. At least they'll be retiring soon. Let's hope for an improvement in the "gene pool", eh? Fancy a move to Nottingham? 🙄
This depends on which health trust and cancer alliance your hospital is in.
Normal for Oxford, although your Lymphs are on the threshold for Oxford.
nssg.oxford-haematology.org...
At the moment you are of low concern.
I've gone from Dx to treatment and not seen a specialist.
Thank you so much for the info, as far as im aware no test have been done, didnt know about the chest infections either,
Hope your treatment is going well.
The lymph was 28.3 on the blood test before so have gone down a bit on this last test.
When I was diagnosed 23 years ago I was seen at the local hospital once a year. I had a bloodtest and consultation. I was examined for enlarged lymphnodes.It was 9 years before I needed treatmemt. My numbers started to rise and I had scans showing I needed treatment.
We think we are being neglected but there isnt anything they can do. Its early days and there isnt anything to see.
As long as you are having bloodtests when you are asked for them, you could be several years before needing treatment. The test results will show how quickly the cll is progressing. Your doctor will monitor you for any sign of symptoms.
Now is the time to get on with life. Its clear that you are doing ok. Unless you have other meds or a reason for fatigue then it probably is cll. I have bad fatigue but also other health issues.
Many others on this site will have more advanced cll and need more monitoring.
Its frustrating but be pleased that things are not progressing.
Make sure you are uptodate with vaccinations and be careful to avoid infections if possible. Eat well. It doesnt matter who you see, they will all say the same thing, They cant treat until they have to and now is the time to stop worrying, Anne uk
Thanks AnneYes i have other issues that stops me doing things that i would like to do, Osteoarthritis all up my spine and into neck so cant walk very far now, so no walking round lakes like we use to do, but my husband has walking issues now too.
Im not too worried at the minutes as my results are good at present, in the back of my head keep thinking my gran had 3 cancers and her eldest daugher died of stomach cancer which they didnt catch early enough,
I have lumps on both sides of my neck which he knows about but he put it down to covid reaction had them about a year, my GP did send him a letter about them but nothing.
That sounds just like me. I have constant pain and mobility problems. When I was diagnosed age 43 I was in agony and shortly afterwads had surgery on my spine. My back is unstable and I have arthritis and fibromyalgia. Just to make matters worse I have now starting injecting insulin.Its one thing after another isnt it? We expect to be lacking in mobility and get a surprise when our husband loses his fitness. Mine is 73 and he is moving slowly and generally seeming old. Its hard going abroad because he gets flustered at the airport and I cant physically help.
The painkillers and diabetes make me tired but I sleep in the day.
Those with cll will know that if it is diagnosed early it can be a long time before treatment is required. It was 9 years when my numbers doubled to 100. Scans showed my spleen was enlarged and glands from my groin to my neck were enlarged. I didnt feel ill.
Things started to speed up and my spleen was pressing on my stomach which made it hard to eat very much. I lost weight. In the meantime treatment was sorted. This was chemo fcr.
I have had immunoglobulin for 5 years and I am in remission. I see a haematologist next week. For the last 4 years I have had telephone consultations. I have stopped taking ibrutinib for a short break.
I will have my spleen and lymph glands checked that it isnt like last time.
It will be a while before you are like me and treatment is mostly tablets. The longer you go the treatments are being developed and will be better than before. They cant stop the cll coming back.
Its common to have enlarged glands in our necks but blood tests will show if there are changes. Just hope they dont. Your haematologist is right because its early days. He hasnt reassured you and you feel dismissed. Its only when things get worse that you can decide about doctors. We are not like the USA that you can pick your consultant unless you have very bad issues. Sorry this post is long. Anne uk
Hi Anne
I think it's just everything at once at the moment, I'm having a lot of pain in my neck at the moment, so lots of painkillers then there is the osteoarthritis all up my spine and I'm still working, then the specialist wrote me off no explanation as to why, my mother in law is refusing to eat anything Dementia so it's full on at the minute.
I just want it simple lol
Sometimes its too much and you really have a lot to deal with. When you are in pain it makes life hard. My Mum died 15 months ago. I feel we have only just sorted things out. My brother left me to do everything. Its been a nightmare. We have sold her bungalow and administered her Will. Strangely they were talking about eating and dementia on tv this morning. They made shepherds pie to give them food they recognised. Dementia is awful. In the nursing home my Mum was in there were people wandering around in their own world. My Mum wasnt like that. Her boyfriend is 101 today!
Can anything be done to ease the pain? I had facet joint injections a few years ago and they did help. I stopped working. I also got a cleaner. She is amazing and it has helped. Im not pushing myself the way I used to. I cant manage without painkillers but I have slowly cut the dose as I was doped up. I wish I had got a cleaner years before when I was working. She is young and fit and I realise how much I struggled.
If there is anything you can do to make life easier it will heĺp to ease the pain. I miss my Mum and keep wanting to ask her things and realise that she isnt here.
Forget about the cll for now. It cant be treated hopefully for a long while. As long as you have blood tests and tell your doc if you are worried, things can wait.
Take care, Anne uk
Thanks Anne ❤️
I kept going to doctors he kept sending me to physio which doesnt help at all, i took my husband with me last time so they wouldnt fob me off, at least they sent me for a scan so i know its cervical spondylosis caused by the osteoarthritis, nobody has mentioned any treatment for it yet.
I wish i could finish work but not old enough yet really struggle some days.
We are in the process of getting a bit of help with his mum as she is still in her own home my husband looks after her he goes there twice a day she is 91 this year. Bless her.
Everything just seems so stressful at the minute. 💕
Not quite, my husband saw a Haematologist first, had regular appointments on W/W then Covid, telephone and retest a couple of times and once he bloods were considered stable now just a call every year, no further appointments. If your bloods are stable and you are otherwise healthy then keep away from them as long as you can. If however there is a change then asked to be referred to a consultant as is your right! Good luck x
They are good at the moment, he did send a letter to doctors explaining what to look out for which i have a copy of, so at least i know.
then you have the knowledge of what to look for, also research the illness and be aware this then gives you control and the power to deal with it, when to seek medical advice and so on. I always fare best when in control lol
I take my husband with me he wont let me be fobbed off lol, i just havent actually see anyone face to face yet, there is a few things in letter i dont know what it is so will google them lol.
Here in New Zealand you don't get to see a hematologist until your GP thinks your numbers/symptoms etc have arrived ata particular level. We just get 6 monthly blood tests. If you want to pay or have health insurance cover you can try, but there is not an abundance of CLL specialists. I'm 7 months into W&W and haven't quite decided what to do in this situation myself. Bloods tomorrow morning though...
I dont think my GP know too much about CLL as he asked the specialist about the lymphnodes size in my neck. But at least he knows what to look out for now with the blood tests.
I’m in the North of the UK. I see a clinical nurse at my nearest hospital for blood tests once a year. There doesn’t seem to be any interest from my GP practice. If I need to see a doctor for any other reason they never ask about CLL, even if I remind them.
Mine doesnt ether i usually have to remind them,
No, so you should see a haematologist at the minimum. I don’t see what country you’re in, but CLL is not a condition that should be managed by a GP. Do you know your mutation status, and have they done any genetic analyses to show how quickly you might progress?
Hi im in the uk, No they havent done any tests at all, i know there are injection i need to keep updated but he never organised anything, i know pneumonia is one of them which i organised myself but had a fight on my hands to get it.
I have the NHS app so can see results as they come in.
So here is what you need to do. Go to you GP and ask to be referred to a CLL specialist for a review. Most haematology dept will have someone who has a good handle on CLL. The other option, and I would strongly suggest you consider it, is to see a specialist privately to get a review on your status. Maybe just a consultation for an initial chat, then they can write to you GP to advise on the next steps. Nova Healthcare in Leeds is very good! If you can’t afford that, get a referral through the NHS to a specialist. I’m sure you are all fine, but it’s important to have clear understanding of your condition, precautions you need to take (vaccines). The most important part for your mental health, is to have a plan to manage what is a very dangerous disease. Infections are the biggest risk to CLL sufferers.
Thank you for your comment , i will definitely be thinking what to do next but i do know i wont be going back to him i have no faith in him personally,
If you want peace of mind, I would pay for an initial consultation with someone like Tal Munir @ Leeds teaching Hospital. Tal is available privately through Nova Healthcare. It's probably a couple of hundred pounds. You will need copies of your latest bloods and records from your NHS appointments. You can call them directly, you do not need a GP referral if you are not using health insurance. He will be able to give you some guidance and write to you GP and Haematology dept to suggest recommendations. He may say you are doing just fine... It will give you peace of mind, and provide some form of the plan. If you need his secretary's number, just ping me here.
Brill thank you, not sure who my Gran saw but she is from Leeds but that was many years ago, she had stomach and bowl cancer and then a blood cancer,.I might end up doing that, this last experience has put me off a bit.
It was my GP who spotted the abnormality with my white blood cells. She rang haematology for advice. She was told to monitor me three monthly and then after a year, she contacted them again and I was called in. This was 2019-2020. Was on watch and wait. I had all my subsequent blood tests ordered by the hospital done done at my GP practice so I didn't have to travel to the hospital. Regular telephone appointments with haematology until May last year when I was called in for face to face and told it was time to start treatment. I am under a CLL specialist.
Good luck
My previous doctor retired so i got a new one it was him that told me they had been watching the white blood cell count for years,
I can't add much to all the other wise advice. I was diagnosed in 2012 and when my local consultant retired. The guy who replaced him was not entirely to my expectations so I decided to get a second opinion. My GP was happy to help me with that. At that time (2014) there was a list of CLL specialists published by the CLLSA. I picked out the best I could find from the list and he was kind enough to take me on as a patient. He agreed. 10 years later I am still with him. At the time I first saw him my Lymphocyte count was only 4. I saw him once a year until 2019 when I had some issues related to vaccinations. Gradually visits increased until the start of this year when I went to monthly until I started treatment
I live in mid Wales and my consultant is at the ClatterBridge Cancer Centre in Liverpool. It means that every time I have an appointment I need to stay in a hotel near the Centre. It is more that worth any inconvenience and expense.
I have just started treatment and a combination of my GP and the CCC team has me covered. In the event that I could not travel and need to go back to Shrewsbury we have discussed that my Consultant would keep over sight of my case. It does help that he trained the current head of haematology in Shrewsbury 😊
So if you are not happy - ask for a second opinion. Find the nearest recognised specialist. Your GP should help you at least by writing to that person and asking them on your behalf. I think folks in NHS England are entitled to choose where they are treated. Certainly entitled to ask for a second opinion and from someone you choose. In any case don't accept second best.
Thank you so much, i think i am gonna do just that, my count is at 20 at the moment the test before that was at 28 so has gone down at bit this time.
When I was diagnosed the first thing I did was look for a "local" specialist. I made an appointment and met with him and he told me that if there were any issues that were unusual to make another appointment and sent me back to my hematologist. I have been with just my hematologist ever since and have had one treatment already. My hematologist has a lot of knowledge about CLL and is in contact with a doctor that is involved with CLL clinical trials in the same hospital that the specialist is in so I feel comfortable with my hematologist. I am not sure that a specialist is necessary if there aren't any unusual issues with your CLL and your doctor has knowledge in it.
I dont think it is causing any issues at the minute, im having more problems with the Osteoarthritis so thats keeping me busy and the workng 3 days a week.
NHS cancer centres have huge backlogs (6mth+ for non urgent cases) so getting their attention is not easy on watch & wait as they triage patients. It might not work for everyone, but I use GP/NHS for blood tests and vaccines and pay to see a private CLL haematologist twice a year (£250 each time) for peace of mind.
I looked into getting a second opinion privately and unless I want to drive 2 hours plus, the nearest private haematologist is the same chap who was so dismissive via the NHS. I'm not paying to be told "it's probably the menopause, have you tried meditation " again.
I have health insurance through work think i need to have a look what it covers as not used it for ages lol,
Yes I am just under my gp for a yearly blood test.
I completely understand! My first two CLL specialists told me they would give me 10 years and probably not treat me. I have 5 left and it’s haunting to think of this. My second “specialist would come in the room throw a copy of my blood co work on my lap, say it “looks good and that’s all”. He never asked if I had any new symptoms, how I was feeling, if I had questions, nothing! Im currently waiting to see a female specialists, new and hopefully more positive and interested. Maybe I won’t leave so depressed and upset anymore. My primary doctor helped me and I was so grateful for him. Best of luck to all of you!
That's bad, I sometimes felt like that after speaking to him, there was something picked up in my blood but he just said that results were good. 🤔
Hello PusscatsGoodies
Does your hemo/onc do physical exam like check lungs, lymph nodes and spleen enlargement? How often do you see hemo/onc?
Hi I have never seen him, I have spoken to him three times in a year and half on the phone.
Hello PusscatsGoodies
Hopefully your H/O will start doing physical exams if you get closer to treatment. I have physical exam every 1-3 months, but I am 6 months post CLL treatment. That was big issue during covid, lack of physical exams. Blessings
Hopefully, he never even said why he was sending me to GP for yearly blood test, only thst my bloods were stable at the minute.
i AM MUCH THE SAME -NO SEEING A SPECIALIST AFTER 8 YRS W & W
I had the same problem getting a diagnosis for my pain. I was in agony with my back in spasm. My doctor referred me to a consultant and I paid to go to his clinic. I had scans and a standing xray. He was going abroad to operate on needy people and I had to wait. He transferred me back to the NHS and booked an mri whilst he was away. They removed the disc. It was a problem because it broke into pieces. In the end I was told I had loss of lordosis, a loss of the lower curve of my back. Pain was fibromyalgia. I always have something wrong.Its sad that we cant go for a run but in the past I coped. Im not sure I feel optimistic now.
Things do sort themselves out. The cll is best ignored until you need to take notice.
I have had the back spasms so know axactly what you mean, i ended up with a sick notes for work as slightist movement killed.My mum has curviture of the spine so was expecting something like that.
I try to take one day at a time now.
Do you still get a lot of pain with yours?
I have had my back in spasm several times.It takes weeks to settle it down. It is agony to move and I rang the doctor and told them I needed stronger meds. The doctor prescribed morphine and adjusted the dose of my other meds. That was last year. My lower back is unstable and I have to protect it or it goes click.I lean on things when I bend to load the washing machine etc. I change my posture to avoid putting strain on my back.
It rules my life. If I go out and sit in different seats and look in a shop I can only stand for a short time and the next day I am stiff and in pain. I take codeine 4 times a day. I had to gradually ween off to lower the dose. I was getting withdrawal symptoms. I was doped up all the time. I take a lower dose which is ok. It controls the everÿday pain. It wont go away but I know why and that makes it easier.
I imagine you must have constant pain. I had to get a cleaner. Its helped a lot. I dont have to vaccuum or clean floors. She cleans loads in 2 hours.
Anne uk
You have constant pain then, I know about the clicking i get that too and like you hold on to things when bending, im not in constant pain but its worse on work days i always now take pain killers before going and usually again when im there but i work on checkout at local supermarket so constant movement but my boss is really good she doest have me walking about as she knows i cant do it, i can only stand now for about 20 to 30 mins before the pain starts.
Doctors still not given me anything for the pain its like talking to a brick wall, even though i tell them ibroprofen is taking over an hour a half before they kick in properly and im not suposed to take them cos of blood pressure tables, i cant take codene makes me really ill.
Im lucky my husband does all cleaning, i do cooking but sometimes takes me a couple of goes lol.
You sound like me. Make sure you take omeprazole to protect your stomach. Most people dont understand. The more you do the worse you make it. I was in so much pain when I came home from work that I would lay down. My Husband would finish off the cooking. I miss working but dont miss the worry when my back was dodgy. My friends retired from work and we have coffee regularly. I learned from pain management not to feel guilty and to pace myself, like you do. It might take 3 attempts to prep a meal. I must admit I have had a few warning signs and my back aches. I could take more meds but I will wait. I used to swim and it kept me fit. My best friend had breast cancer. It spread to her lungs. Even after 7 years I really miss her. I stopped swimming because of the fatigue but I think I would probably have carried on if she had been going too. Covid is still a risk so I havent been. When things get worse with the cll they will see you at the hospital and may do scans. Its likely they will be thinking about treatment. You may well have a different haematologist. Those who are further advanced will have a different need from someone who is not ready thankfully for treatment. I will see the haematologist for the first time in 4 years. They will know if the cll has started again. Anne uk
Official diagnosis
Low LY#?
Advice needed
Positive things that you have done since getting CLL
