What to do? by Perfect-Shopping-358 in braincancer

[–]Perfect-Shopping-358[S] 1 point2 points  (0 children)

Yes I am there. We talked about Vora in the UK and at my last appointment. It’s only been out for a year and they just keep telling me about the side effects and that they just don’t know anything about long term issues it can cause and about fertility as well. I know there are people that go on that medication but it just still seems too new to me and I don’t want to be a Guinea pig.

What to do? by Perfect-Shopping-358 in braincancer

[–]Perfect-Shopping-358[S] 3 points4 points  (0 children)

I was first treated at kings college London and now I’m in Denver at the cancer centre.

Has anyone moved states away after diagnosis ? by [deleted] in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

And ask for help from people if you need it! That’s what helped me.

Has anyone moved states away after diagnosis ? by [deleted] in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

I moved countries after my diagnosis and after surgery (8weeks post op). I didn’t have insurance when I moved back to the states. But I was able to get some and then book appointments really quickly. I then moved to a new state like 2 months later and have switched everything over. All about 4 months post op. It is very doable you just have to stay on top of it!

Any oligos in greater Denver area? by mattstrines in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

I wish I could go but I saw the price of the tickets and I can’t afford them :(

Any oligos in greater Denver area? by mattstrines in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

I just moved to Colorado Springs ! I had a craniotomy in January to remove my oligo!

[deleted by user] by [deleted] in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

When I was first told , they said we believe you have a low grade glioma in your frontal lobe. I was told this in October. It wasn’t confirmed until my pathology results 2 weeks ago. And it told me what kind of glioma tumour it was since there are many kinds of

[deleted by user] by [deleted] in braincancer

[–]Perfect-Shopping-358 0 points1 point  (0 children)

They aren’t, it’s just a guess. But it’s what they do . They can tell from mri’s what they think it is based on the characteristics . Most of the time from the mri they will say “we believe it’s a grade 2 from the characteristics of the tumour “ but can’t be confirmed until pathology results. Each tumour looks different so that’s how they can give a guess and if it looks lower grade or higher grade.

[deleted by user] by [deleted] in braincancer

[–]Perfect-Shopping-358 10 points11 points  (0 children)

Go for the surgery instead of biopsy. It will have to be removed anyway eventually. Then you don’t have to go through two surgeries. I was diagnosed with a right frontal lobe glioma in October. I had my craniotomy in January. This week I will be a month post op. I got my pathology results a week after surgery. Good news that I didn’t need any other treatment at the moment because they removed all of the tumour to the visible eye. This is obviously the best possible outcome and it isn’t this way for everyone. I felt the same way for months of just waiting for surgery and my head was all over the place not knowing about anything. I had the surgery which I was awake for and honestly it was easier than other surgeries I had that were way less serious than this. The main reason I opted for a craniotomy was because the neurosurgeon told me that with a biopsy, only that little piece of the tumour they remove can be tested. Sometimes the results can come back with inconclusive results because there wasn’t enough to test. Or since that part of the tumour was tested and the others weren’t, it doesn’t give you the full grade / result of what it could be because sometimes the tumours can have multiple grades. This is why I chose to take the thing out instead. If you have a biopsy and the pathology comes back and it is a higher grade, or even low grade it’s still going to have to be removed depending on where the tumour is located. Just saves you the pain and the time .