Hi, newby to Cancer. I had a lge tumour removed from my brain in December, have another half dozen still in there. They are small and had not grown at all at end of January according to CT scan. Had brilliant Neuro surgeon in Brisbane remove the large one. I don't remember much of December due to pressure on my brain from the tumour, but got my 'marbles' back just before Christmas. Area affected was speech and memory. I do have some short term memory issues, but due to surgeon leaving the last bit of tumour alone during surgery, I have no issues with speech, yeh! I tried BRAF meds, but they were so debilitating for me I stopped. I think what I want is some quality and happiness for whatever time I have - I am terminal - they say I will possibly last twelve months with treatment. I feel really great though.. I wasn't offered chemo, and only offered whole of brain radiation. I asked about stereotactic or gamma knife radiation, but was turned down. Oncologist said the tumours don't have a defined outline so I couldn't have anything but whole of brain, loss of cognitive skills definitely promised. My surgeon has now referred me to Brisbane oncologist, so I am happy to see what their opinion is. I do take vitamins and herbs to boost my immune system and was encouraged to keep going after the CT scan showed no growth, and the dissappearance of the last of the big tumour. Hard to believe, but I want to believe it. Had an MRI yesterday and am keen to find out the results. My heart goes out to all of you here, and wish you success in your treatments and your choices.
ive come on here to find some people that are going through a some what similar situation .
ive just read your forum. firstly im so deeply sorry for what you are going through.
Im 27 and went to the hospital 4 weeks ago with headaches/loss of vision. after having emergency surgery i found out i have a very rare and aggressive brain tumour.
ive asked all my specialists to not inform me of the severity as i need some hope. reading your forum i just thought you were really brave in sharing. im not quite at that point where i feel i can talk about it as its still a bit soon but i find strength in reading other peoples stories.
i hope you dont mind me reaching out but i just wanted to thank you for sharing your story.
its so daunting going through this and ive been trying to find support groups online and in person but im relising theres not that much out there .
i wish you all the health and happiness in the world.
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