Hi, I was diagnosed with a brain tumour thought to be grade 2 after having seizures every day for 9 months that A&E/gp didn’t deem serious enough. I had surgery in July which removed around 90% of my tumour, which was very large but my surgeon said it had likely been growing for years. I have recovered really well without any side effects really and been looking forward to going back to work. However my biopsy results came back last week as a grade 4 diffused Hemispheric glioma G34R mutant. I wasn’t told to bring anyone to this appointment so went alone. It was very traumatic.
This type of tumour is rare and has only recently been recognised as different from a glioblastoma so treatment is unlikely to work. I have my first appointment with an oncologist on Thursday this week, but I am very apprehensive on my prognosis, as I know long term survival is very rare.
I am just wondering if anyone has any advice on what I should ask my oncologist, the process of clinical trials and advice of anyone happens to have the same type of tumour as me :)))
I also noticed that on my nhs app an FN1 form has been filled out for me and I have been put on the hospice register. None of this has been discussed with me and I feel like me as the patient is being ignored
