Recently diagnosed with CLL

Hi, I've recently been diagnosed with CLL age 52 , living in London. Bitnet stage 1 "watch and wait". I also have type 1 diabetes ( 29 years ).

Survived lung cancer 20 years ago.

Struggling to get my head round things, diagnosed local district hospital and have seen a haematologist . I have constant discomfort /pain in neck lymph nodes , ultra sound confirmed lymph nodes normal size so told its referred pain/stress. I believe this to be incorrect and leads me to conclude I need to be treat by a centre of excellence where I will get more appropriate responses to my enquires.

Who/where is the best place to go in/ around London?

Many thanks

6 Replies

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  • Welcome... you are in the right city... St. Barts and Marsden, both have CLL clinical research programmes and a number of world renown CLL specialists.

    I'm sure there are others in London...

    ~chris

  • Thanks Chris , I had alls heard University College Hospital in Central London is good to.

    Paul

  • Dr Claire Dearden at The Royal Marsden, a true specialist doctor for CLL.

    See these links below:-

    royalmarsden.nhs.uk/our-con...

    royalmarsden.nhs.uk/our-con...

    Dick

  • If you ask to go to one of these how do you know you'll see the right person? Could you not just see a consultant working under their name?

  • It has been my UK experience that all the haematologists in the local oncology group get together at least weekly to discuss every patient’s requirements.

    This local group can be either a single hospital or two hospitals in a less populated area of the country. The basic plan appears to be that a patient is thoroughly discussed amongst the group before any treatment is even considered.

    I have also seen a patient, who had not yet seen the most experienced haematologist, specifically ask to see this haematologist on the next visit, and was duly transferred to their requested haematologist.

    Thus in my experience just being at that treatment centre is often sufficient to ensure that a whole knowledgeable team is watching the patient.

    Dick

  • Thanks Dick , she seems to come across well in the video. The Marsden's not too far from me.

    Paul

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