High Grade Glioma diagnosis

Hi Ju,

Sorry to hear of your situation, the couple of things that I would say that from my experience is really enjoy your time together and don't put things off as you can soon get wrapped up in appointments and treatments. Talk to each other a lot, it's amazing how quickly the emotions bottle up otherwise and they then then explode all at once, you'll feel angry at the unfairness of it all and try and avoid taking it out on each other. Use others to also offload on where possible. I found it really hard to open up (even 6 months on I don't find it easy). And while you haven't given many details of the diagnosis steel yourself for the unexpected. I was told initially I had a low grade glioma we carried on as normal without really thinking about it assuming we had years and years before it would be an issue, then a month later a 2nd scan and the diagnosis changed to a likely GBM4. Ended up with surgery within 10 days, and then everything hit the fan and we were caught completely off guard. I wish you and your other half the best of luck and let us know how they are getting on.

It's just so crap. He had 2 seizures totally out the blue, then was handed a death sentence. Waiting for a biopsy appointment now.

Hi Ju,

Life is a bitch. No point in saying otherwise.

Xpio is right. Talk to each other about this. He probably hasn't really taken all this in yet. I know I didn't - probably still bottle up a lot of it  and it's quite a few years ago now.

With a high grade glioma I assume you have had already the scans etc. I am surprised that the doctors have said precisely what the tumour is before having a chat with you about the biopsy. I would have thought that would happen at the appointment rather than before. I have probably misunderstood your post.

It won't be much of a comfort but I had a similar experience. Two seizures out of the blue and told I had a tumour. "Luckily" the tumour turned out to be low grade and I did not have to have the op,radio,chemo etc for another ten years or so. It is still there lurking but I'm still here. What I am trying to say is that it need not be a death sentence - or not for a long time. Hang on in there and wait for more info.

All the best and as Xpio says, let us know how things are going.

Beginning Chemoradiotherapy on the 14th April.

Hi Ju,

If you are having chemo have you had an op? If so, how did it go? Any radio as well?

I'm guessing that chemo may have been put on hold because of the lockdown or are you still able to go ahead? The fact that you are having chemo suggests that your "death sentence" isn't imminent . That has to be a good sign.

Keep us posted and good luck. I hope you're not feeling too ill because of the chemo.

Hi JuSimmo,

So sorry to hear this. I haven’t visited this site for a while so have only just seen your post.  I hope things are looking a bit better for you now.  I was diagnosed with a high grade glioma following a massive seizure in March 2018, had two left frontal lobe craniotomies, six weeks of whole brain radiotherapy, and a year of chemotherapy which ended last August.  I am still here and doing well.  They weren’t able to remove all the tumour but I have an MRI every three months and so far the tumour hasn’t “progressed”.

I hope this gives you both some hope for the future.

Kind regards,

Pamela 

Hi I was told last November after having slurred speech that I had a tumour on the brain grade 4  and was operated dec to remove part of it then had to have 2 more operation because of infection .then was intrvoenus drip for six weeks I have just finished 6 weeks radiotherapy and chemotherapy  and on a break till next lot of chemotherapy I know I feeling anxious all the time as have had several seizures which have taken over the cancer worry I have a lovely family but trying to keep positive but feel so tired all the time but hope that will subside then having big scan to see what the tumour has done take care and like people saying try and make the best of things I am xxxx