UK CLL Forum, UKCLLFORUM

Finding a consultant

Topic Made On: Dec 20, 2010 01:25pm
durham

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Gender: Male
Posts: 3
I feel like a young kid making its first tentative steps into a new and rather intimidating world.

Taking my symptoms of fatigue and night sweats to my GP in 2006 eventually lead to a diagnosis of Lymphocytois. This diagnosis was upped to CLL in September. So Iím a new boy. Lots of support group leaflets and internet searches later Iíve begun to understand a bit about the disease and the terminology used in the diagnosis letter - all those Rias, Binets and B-Symptoms, but this still left me with numerous blanks to fill in and an armful of unanswered questions.

Iíd like more information, to get more involved, be proactive and ideally have further diagnostic and prognostic tests (FLOW, FISH, etc) but whom do I get proactive with? Which Institute/consultant do I approach? Having a choice is good but it means you have to do a choosing. My GP suggests I ring round the ones I like the look of and heíll initiate a referral to the consultant haematologist of my choice. But how do find one with whom Iím likely to have a productive relationship with? Iíd like to get involved and ask questions and not all consultants are comfortable with that.

I live in the Scottish borders roughly half way between Edinburgh and Newcastle. Possible institutes within striking distance include Borders General, Melrose; Gartnavel General, Glasgow; Royal Victoria, Newcastle and the Western General and the Royal Infirmary in Edinburgh. Hereís the pleading, being new to all this Iím a little lost and anxious and would like to tap into the greater knowledge base of the group to give me a direction. Does anybody have any experiences with any of the haematologists at any of these institutions, or others I should have thought of, they could share? Iíd be really grateful. Iím looking for a consultant on the proactive side, willing to explain things and who isnít phased by questions.
Any help will be really really gratefully received.

My email address is stdin@btinternet.com.




Replied On: Jan 13, 2011 04:23pm
durham

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Gender: Male
Posts: 3
Thank you those who responded to my plea for help in finding a sympathetic haematologists in the Scottish Borders - a special thanks to those who emailed me direct. On that note Iíve unfortunately lost the email address of Jacqueline from East Lothian who Iíd like to respond to. If your reading this Jacqueline please have a look at my posting in the ĎOff Topicí thread and get it touch if you can.

Considering the advice and recommendations of message board members I made an appointment to see Dr Leach, the only haematologist in Scotland to appear in the CLL Support Organisationís consultant list. I visited Dr Leach, at the Department of Clinical and Laboratory Haematology, Stobhill Hospital, Glasgow, just before the New Year. He was very approachable. I saw him for about an hour during which we discussed CLL in general, the diagnostic and prognostic tests, the immune system etc. after which he happily answered some of the questions I'd been accumulating since my diagnosis in September. He was straightforward, honest and it was a welcome change to be treated like an adult.

Being on the nursery slopes of this disease and after reading past postings, I take my hat off to the fortitude, resilience and pure bloody-mindedness of people in this group. Long may it continue.

Thank you again



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