Hi, I am new to this site, and wanted to share my experience of my mum & pcnsl.
I don't want to frighten anyone but because pcnsl Is a rare cancer I would like to let people know what an aggressive cancer it can be.
In 2016 my mum started with night sweats, an itchy scalp & dizziness along with what mum described as a tension headache in the back of her head.
We visited her GP lots of times & he diagnosed vertigo, mum seemed to improve a little but then new symptoms developed. She had extreme fatigue & her memory became terrible and she had a few falls in the garden. Again we visited the GP who ran some blood tests & it was found she had a raised plasma viscosity. The Gp increased her dose of vertigo medication in the hope this would help but by August a new symptom of slurred speech developed, again we went to her doctor & mum was admitted to hospital.
A CT was performed & it was found that mum had a lesion in her cerebellum. A craniotomy was done purely for biopsy reasons as we were told it would be impossible to remove the whole lesion because of where it was within the brain.
We received diagnosis of primary central nervous system lymphoma on the 9th September and mum was transferred to a specialist oncology ward. Unfortunately mum developed ascites so no chemotherapy could be given, her deterioration was so rapid, it was like she had lost her personality and she was asleep constantly, she was so weak but always managed a kiss & a cuddle.
Sadly we never got mum home & she passed away on 31 October 2016, just 7 weeks after diagnosis. My only comfort is she was never in pain.
I'm still in shock, it's 35 weeks today since my mum passed away, I am receiving bereavement counselling but it may help if I had someone on here with a similar experience.
My advice to anyone would be if you have any of the symptoms my mum had then please go to your Gp, and don't be fobbed off like we where, mum clearly had symptoms of pcnsl in the very beginning. I know this is a difficult cancer to diagnose and I don't blame her Gp in anyway but I think we should of been more persistent instead of accepting the vertigo diagnosis.
I miss my mum so much and hope that someone reading this who has symptoms like my mums will seek advice.
