Hi all,
hope you're all having a great week?
Just wondered, following my diagnosis in Dec 22 how long will it be before I will be introduced to an oncology team etc. I've read from other hospitals close to me (Liverpool) that's it's quite quickly after diagnosis but my consultant doesn't seem to have done it yet? Is it something I should chase or leave for now as I am on W&W?
Thanks.
it was haematologist that I saw not oncologist.
I've seen my haematologist but from different threads I've read on different websites, it mentions about speaking with an Oncologist, Cancer nurses etc. I'm assuming this is incorrect info. 🤷♂️
Oncologists are trained to manage solid tumour cancers, though some have broader training including blood cancers, so are known as haematologist-oncologists. Because CLL is one of the ~60 different B cell Non-Hodgkins Lymphomas (NHLs) and it can sometimes be confused with closely related blood cancers, you ideally want to have a specialist who sees lots of CLL cases to get the best management, which would therefore most likely be a haematologist who specialises in blood cancers. That can sometimes be difficult to do without travelling some distance.
Provided your specialist keeps across the rapidly changing treatment options for CLL in the past 5 years their specialist medical training matters less than their expertise and experience with CLL. Unfortunately it's not uncommon to be treated too early or be given a treatment that won't work, or will only provide a short remission, because a cancer specialist treats all B cell lymphomas with a common approach and doesn't know what testing to do prior to starting treatment to selelect the treatment that will give you the best response. You typically get your longest remission from your first treatment, so this is very important. (A tell that you are seeing a specialist who isn't bothering to keep abreast of CLL specific management, is when they start talking about commencing treatment when your White Blood Cell (WBC) count approaches 100 (100,000 in most US labs). We have members still in watch and wait with WBC counts several times that, because CLL cells are small so don't cause circulation problems and CLL management guidelines only use doubling time, not the absolute lymphocyte count, as one of the triggers to consider starting treatment.
Some of us manage this challenge of achieving optimal care by seeing a nearby specialist who may not have many CLL patients, but is prepared to work with a recognised CLL specialist, whom we travel to see once a year or so. Studies have shown, that as you would expect, this can, on average, add a few years to your life expectancy with CLL.
Neil
Have you thought about The Christie in Manchester?
Thank you Neil. Appreciate the explanation. 👍
If you are seeing just a regular haematologist, it would be worth having a look at your nearest CLL specialists and asking your GP to refer you to them. The haematologists are not as up-to-date as the specialists are and from experience, they tend to be more "alarmed" by certain changes and issues than the specialists - which makes your stress levels go up unnecessarily. The team that is over seeing my care is "labelled" as haemato-oncology at Barts. I'm sure people will be able to advise you where you can choose to be referred to if you ask on here. I was diagnosed at one of the London hospitals and under their haematology team but I asked my GP to refer me to Barts about one month into my diagnosis. The GP questioned it a bit and I just stated I wanted to be under a specialist and get the best advice and care I could (I added that surely, he would want the same if he was in my position). I was seen about 4-6 weeks later. I don't think the haematologist - your consultant- will refer you anywhere unless you ask (I did ask the haematologist at first, although I felt it was a bit silly and didn't want them to take it personally - but it was my life and that was more important than how a stranger felt about it...he just said it wasn't needed so I went to my GP - so ask your GP straight away 🙂).
I was diagnosed in August 22. I’m in Cumbria and have only seen a consultant haematologist. I have been introduced to a link nurse. I don’t know of CLL specialist in the Northwest. I have searched on Google but can’t find one.
Hi Thursday45,
I'm based in Merseyside (towards Warrington) and have also been googling. I have found a promising one in Liverpool. It's called Clatterbridge Cancer centre. Looks great tbh. I'm going to speak with my doctor's when I see them for some jabs on Tuesday to ask to be referred there. 👍👍
That sounds very promising. I hope you can get referred.
I think there is a cancer centre in Preston, so that might be a way forward for me. I will ask when I see the haematologist next time.
Thank you.
Hi
I’m based in IOM and my Haemocology consultant has regular case meetings and discussions with Clatterbridge who have access to all my blood/lab results so I don’t unnecessarily need to travel to and from Liverpool for appointments (which can be stressful). I think Clatterbridge is the best place to go if you are in the NW.
If you are in Warrington I am sure you could be referred to Clatterbridge in Liverpool. It is a very new hospital and all staff are great. I had 6 monthly blood checks and initially would have a telephone consultation with blood results and was on W&W for 10 yrs. So no need to go back to hospital and wait to be seen. It will only be once your count gets to certain point and perhaps if you have other symptoms you will be seen more regular. They do keep a close eye on you.
Thanks Westie11. I'm seeing my doctor on Tuesday next week so I'm going to ask if I can be referred to them there. I've had a look online and it does look brilliant tbh. Thanks for your comment.
Our experience in the UK is that - on the whole - the haematologists are well connected into the haematology network. So even if they are not CLL experts they know someone who is and will confer.
For us it’s been a balance between staying local or having to travel to London. Staying local was really helpful during hospital stays and for treatment.
In the UK, I don't think most CLL folk have an "oncology team" as such. I'm under a haematologist who will refer patients to other departments if he thinks necessary. I was once referred to a dermatologist when I got nasty rashes, but I don't get regular dermatology checkups. There is also a specialist nurse.
Other UK centres may be different.
Paula
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