We Talk Brain Tumours

Thank you CH, that does help and no, I didnt know most of it already, in fact I didnt know any of it! But it makes a lot of sense and thank you for taking the time to reply to me.

I know I should be looking at the positives and I do try to most of the time, for us, it could be far worse than it is at the moment.

Take care X

Hi Nerak,

With my tumour the MRI looked like a low grade, the surgeon said the tumour looked low grade when he took it out and initial pathology report was grade II Oligodendroglioma.  Was told on a Friday but referred to an oncologist anyway, she told me on the Tuesday that another pathology report back from a lab in Cambridge said "they were too many cancerous cells for them to be comfortable calling it a grade II" (around 12% I think, I had a copy of her letter to my GP but understood little of it LOL) so I was re-classified as an anaplastic grade III Oligodendroglioma and with that, effectively had another 4 years cut off my prognosis!  My oncologist assures me it was still nearer a II than III and could have just been on the turn!

I am being treated as if it were an aggressive high grade and have finished RT and seeing my oncologist Friday to collect my 4th cycle of Temodal (if my bloods are ok tomorrow).

Hope that all made sense, been struggling for words today!

Debs xx

Hi again Debs - thanks for this, after reading it, it does make me wonder why I am obsessing over it.  The old addage No News Is Good News is what I should be thinking!!!  My daughters oncologist said that if I pressed her she would grade it II or III, but they are not starting any treatment yet, despite not being able to remove it by surgery either.

Good luck for your 4th cycle.

XX

Debs,

I don't know what your revised prognosis is, but Doreen has an anaplastic astrocytoma in her left temporal and was told around 2 years, that was in January 2003.

She lost her hair in at the 3 points of radiotherapy, but that has since regrown apart from a very small amount along the debaulk scar line.

She also was allergic to Phenytoin and showed outward signs of toxicity, her eyes shone brightly. She was switched to epilim and all settled down.

Best wishes,

Martyn.

Hi, though P has a different tumour we too were told different gradings but P's ns tutted and shook his head and said gradings aren't really that helpful as everyone's BT behaves differently and unless all the tumour is removed and examined it is often difficult to be precise about the exact grading - like CH says because different parts of the tumour may be different gradings - so on a debulk or biopsy they may remove a part that is one grading and never actually know what grade the part was that is left behind and quite rightly may be on the turn so only time will tell with growth rate.

Just another piece of the vague jigsaw!

xxxxxx

A lot of tumours contain mixed 'gradings' of tumours but what they usually do is grade it at its most aggressive part that they visualise on examining the sample, its to do with how different the cells look, how they are multiplying (called mitosis). It sounds unusual not to have any treatment if its a grade 3. We just have to have faith in the professionals to a degree.

I've been a little lost - thought I had totally lost the plot then I saw that someone had started a new thread. Good to see some of you still around. I have washed and scrubbed the carriages and dusted around a bit while I was waiting.

Martyn - so glad to see you..... hope Doreen is well and that you are too

I am off to counselling tomorrow - thought I would give it a go as I can't seem to do anything without a tear or two.

Love to everyone

Allisonxx

Once again, thank you all for your valuable opinions and the wisdom that your experiences have brought you, the oncologist and team have said similar things regarding different gradings and the grading not being the crucial information from their point of view, but after reading people profiles it seemed that everyone knew 'theirs' and I got into a panic I think.

Best wishes to you all, and Allison, we havent 'spoke' before but I hope the counselling helps you.

X

Hi Allison - good to see you back - thank goodness as I was getting worried that Martyn would be recruiting me to start the cleaning - too many have gone awol or simply lost for the present - and at the moment I'm far too lazy!  Hope the counselling helps - I know it does me - helps put things into some kind of order - well sometimes.  xx

Allison and Mandy - what sort of counselling are you having? Where did you find your counsellor? I have just been accepted on a CBT (Cognitive Behaviour Therapy) Course by MIND. I had to have an assessment and I said taht my main aim would be to cry less - I cry very very easily now and just wish that sometimes I could find a way to control myself. I still don't really understand what CBT does but they said that they thought it would help. It's a 10 week course and starts in October. But in my heart of hearts I know that I'm not going to last 10 weeks - well unless it's absolutely amazing stuff! In reality I know that I'm going to spend the full 3 hours in tears each week, come away with a migraine and dread going back teh following week. I know this sounds terribly negative but I'm being realistic. So am very keen to explore the idea of counselling instead. Any pointers very gratefully received.