r/braincancer • u/Beneficial_Ad_1329 • 9d ago

Recently diagnosed with brain cancer

He redditors, i was recently diagnosed with a braintumor around 3x5 cm on the right hand side of my brain. I feel very frustrated that i can't get any answers from the doctors about my survival rate yet or worse risk of getting paralyzed on my left side of the body. i understand that it takes time and they have to wait for the results from the biopsi that was taken last friday. But can anyone give me something? I'm 28 years old and feel free to ask any questions, and i will try to answer as best as i can.

EDIT: Not my scan but looks awfully close to my pictures. stupid me didn't take a picture of the scan. maybe i can find it somewhere in my online journals

14 Upvotes

95% Upvoted

39 comments sorted by

View all comments

3

u/OutlanderLover74 9d ago

I’ve never been given a prognosis. They really don’t know how each individual will do. Early on, I read I had a prognosis of 12 years. It’s been 17 so far, so they can guess but don’t know. Once you know what you’re dealing with, that will give you a better idea.

2

u/whygamoralad 9d ago

Can I be cheeky and ask if/ how many craniotomies you had? Any chemo or radio? What type and your age?

I'm awaiting my craniotomy but know a guy in work who's gone 13 years since diagnosis two craniotomies, radio and chemo after the second and has had no evidence of the glioma for 7 years now.

3

u/OutlanderLover74 8d ago

Ask anything. I’ve had two craniotomies & am now on Vorasidenib. I was 33 when diagnosed & 50 now. Mine is a Grade 2 Oligo, but there’s been some enhancement since starting Vora. It has been decreasing, though. It’s been seven years between each recurrence.

2

u/whygamoralad 8d ago

Thanks I'm 32 hoping it's oligo too. I'm hoping my timeline looks similar to yours :).

I've asked to preserve as much function as possible this time and then can always have a second craniotomy if it grows. They also have told me I can go on Vorasidenib too if there is residual tumour which it sounds like there will be.

I've just finished training as a sonographer (ultrasound tech) which requires a lot of fine motor movements and have a young son so want to keep function as much as possible.

2

u/OutlanderLover74 8d ago

That makes complete sense. They usually map your brain so that they cause the least damage as possible. Vora is such a great new medication! I’m grateful to have been here long enough to have it!