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🤞
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.
Newly diagnosed husband
Covid - Paxlovid and Ibrutinib 
Muscle and joint pain
Gastroscopy/Endoscopy 
UPDATE ON: Help! 31yr old newly diagnosed CLL.
