So mum was at ucl today, we still do not have a diagnosis .
It's definitely t cell , but they don't know which. The pathologist is scratching his head . They've said they hope to know by next Thursday.
In the meantime monday she has a lumbar puncture and a echocardiagram .
Treatment isn't likely to start now until after Easter.
Is it normal to take this long for a diagnosis. They've analysed her biopsies twice now , this will be the third time .
Hi Sunshine1907, sorry to hear your mum has had no clear diagnosis. When it comes to T-Cell types it can take some time unfortunately but the system will get there for her.
My type was very rare and at the start took 6 separate biopsies over a period of 12 months to get a correct pathology hit but that was over 22 years ago and things have moved on so I am sure they will find your mum’s type soon.
I had to have my condition re-assessed once it become aggressive after 14 years and it took a further 4 weeks with the samples being sent to a few different labs.
((hugs))
Hi Sunshine1907, good news that she has now a diagnosis and we have had a number of folks with Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) in the group.
At one point 14 year into my journey they thought that my condition had changed to this but a further biopsy pointed back to my initial diagnosis.
Brentuximab has been around for over 10 years and been used for your mum's condition for over 4 years with good results.
Good news and a good starting point to move this forward ((hugs))
