Anxiety Hits Again

HI everyone.

My latest appointment for my follow up was changed. Nothing wrong there until you read the notification on Patients Know Best. It said Chronic lymphocytic leukaemia (CLL) Follow Up. I have TLGL not Chronic lymphocytic leukaemia (CLL). Trying to explain this to the hospital was torture. All I got from the Secretaries at the Haemtology Dept was that you have always been under Chronic lymphocytic leukaemia (CLL) Clinic I questioned it and said it was TLGL which although it is similar to Chronic lymphocytic leukaemia (CLL) it is different. Anytime they do that, I start to get anxious and wonder , have i had the correct diagnosis, even after 2 years. Eventually after my wife took over the call. The Secretary explained that they don’t have a separate code for TLGL and that they use Chronic lymphocytic leukaemia (CLL). It does not help my anxiety. Also, I went to an appointment over something different and yet again, the Doctor asked me ‘What is TLGL’ To tell you the truth, it is becoming boring when I have to explain it time and time again to medical professionals. Anyhow - Moan over - Have a great weekend everyone. All the best to you all


Hello @Jbeaver12
So sorry that you have had a frustrating time over your diagnosis.
It does occur that clinic codes can be titled with disease groups like Chronic lymphocytic leukaemia (CLL) and include related conditions. This is due to numbers of relatively rarer diseases, they do not create separate smaller clinics due to logistics (space/time) I suspect. I appreciate that does not help when you are trying to communicate with Health Care Professionals that are unaware of these diagnoses.
I would always suggest that the clinic letter you receive will have your definitive diagnosis on and that is what you can be sure of.
Do you have a Clinical Nurse Specialist you can call when you have these issues and who can reassure you?
I do hope you have a good weekend and take care,


I do have a CNS Gemma but even sending a text to his mobile goes unanswered. Once I move back to Glasgow, I have been given a name of a Doctor that at least knows more about TLGL. Have a great weekend


@GemmaBloodCancerUK has given you a great response. @Jbeaver12.
I was having treatment for osteoporosis and the infusions were given to me in the medical day centre. Most of the patients there were having treatments for blood cancers, I had to remember which hat I had on then.
I am glad that you have a named doctor lined up for when you move to Glasgow.
Look after yourself and keep posting

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