Primary Brain Tumor (Glioma)
Discussion
So I'm staying out of the 'Cancer-y' threads for now, as they wont pin that particular tail on that donkey until they have a bit under a microscope, but thought I'd crowdsource a bit of context and info on where I'm up to.
After a good few months of increasing symptoms which I'd put down to anxiety and depression (and then the subsequent side effects from the SSRI..) including left side weakness, occasional tremor, banging headaches and the odd visual symptom black/light spots, about 3 weeks ago I had a full blown seizure which resulted in a blue light trip to A&E where they stuck me in an MRI. Initially a 'mass' they've settled on a primary brain tumor in the region of 75x35mm which sounds... big to me..?
It looks like a grade 1 or 2 Glioma. The plan is to 'debulk' it via surgery in a couple of weeks. They won't know if its benign or cancerous until they genetically test it, but no point doing that separately/first. It doesn't appear to be vascularlly connected so should be able to excise a lot of it reasonably straightforwardly (its top and center).
I'm trying not to google stuff too much (but it is obviously inevitable), but the fact they only bandy around 5 year survival rates and % outcomes is not... illuminating or comforting. My biggest problem to conceptualize is that (I guess with all brain surgery) it seems to depend on how the intervention goes or how the individual reacts, so even knowing if it could be day surgery (apparently a possibility) or I could be in the ICU for days afterwards.. The paperwork also uses fantastic euphemisms like "deficits" following the surgery.. temporary to permanent of course.
I guess to start any experiences or thoughts on having a crainiotomy in terms of prep & recovery? Then I'll know more when they get a bit under the microscope and genetically test it to find out if there are any follow on interventions required. Its being done under the QE in Birmingham which I think can only be a good thing in terms of rep & resources..
Thanks,
Craig
After a good few months of increasing symptoms which I'd put down to anxiety and depression (and then the subsequent side effects from the SSRI..) including left side weakness, occasional tremor, banging headaches and the odd visual symptom black/light spots, about 3 weeks ago I had a full blown seizure which resulted in a blue light trip to A&E where they stuck me in an MRI. Initially a 'mass' they've settled on a primary brain tumor in the region of 75x35mm which sounds... big to me..?
It looks like a grade 1 or 2 Glioma. The plan is to 'debulk' it via surgery in a couple of weeks. They won't know if its benign or cancerous until they genetically test it, but no point doing that separately/first. It doesn't appear to be vascularlly connected so should be able to excise a lot of it reasonably straightforwardly (its top and center).
I'm trying not to google stuff too much (but it is obviously inevitable), but the fact they only bandy around 5 year survival rates and % outcomes is not... illuminating or comforting. My biggest problem to conceptualize is that (I guess with all brain surgery) it seems to depend on how the intervention goes or how the individual reacts, so even knowing if it could be day surgery (apparently a possibility) or I could be in the ICU for days afterwards.. The paperwork also uses fantastic euphemisms like "deficits" following the surgery.. temporary to permanent of course.
I guess to start any experiences or thoughts on having a crainiotomy in terms of prep & recovery? Then I'll know more when they get a bit under the microscope and genetically test it to find out if there are any follow on interventions required. Its being done under the QE in Birmingham which I think can only be a good thing in terms of rep & resources..
Thanks,
Craig
Thanks guys. I will say if the brain surgery is half as good as the food I had while kept in, I feel I'm in safe hands as it was a considerable improvement on what I remember as a child! 
Its abundantly clear the NHS has issues even from my few weeks of exposure, but its also very clear it still kicks into gear for the really important stuff, so I have every confidence.
The anecdotal stuff does help, as the basic facts and statistics are so difficult to actually relate to... well anything really. Currently the idea of dying of an aggressive brain tumor seems somehow preferable to them getting something benign out but leaving me with catastrophic complications.. Time will tell and just gotta roll the dice I guess..
Its abundantly clear the NHS has issues even from my few weeks of exposure, but its also very clear it still kicks into gear for the really important stuff, so I have every confidence.
The anecdotal stuff does help, as the basic facts and statistics are so difficult to actually relate to... well anything really. Currently the idea of dying of an aggressive brain tumor seems somehow preferable to them getting something benign out but leaving me with catastrophic complications.. Time will tell and just gotta roll the dice I guess..
unexpectediteminbaggingarea said:
Burner account.
I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.
They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Thanks for the post, it does sound like a very similar status and diagnosis. Interesting that monitoring is an option for you, while I suppose I could advocate and postpone, their default approach very much seems to be remove as much as possible (regardless of its grade/status) mainly to reduce ongoing symptoms if nothing else. Plus, as mentioned they won't be definitive on what it is until they've biopsied it, which they don't seem keen to do separately/first. I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Edited by unexpectediteminbaggingarea on Friday 26th May 10:32
They've got me on levetiracetam as well and another steroid, both reasonably chunky doses, which have certainly helped knock a lot of the symptoms on the head (no more headaches, eye pressure or visual symptoms), but I'm not at a stage where I think I could live with this in its current form without an attempt at surgical improvements. The tremors, balance/wobble issues are pretty tedious, and don't even get me started on the minimum 6 month driving licence surrender....
unexpectediteminbaggingarea said:
Yeah the driving thing is a pain, especially as the 'clock' to get back driving again only starts ticking once the surgery has been done. I have almost come to the terms with the possibility of never driving again, my primary objective is getting through the surgery and being here for my wife, daughter and family.
I am trying to be as pragmatic and emotionally neutral as possible and trying to not dwell too much on the what ifs, which is sometimes easier said than done.
I sincerely wish you all the best with your treatment going forward, and it has mentally helped me seeing your post so thank you for posting.
If you want to contact me privately then by all means do so.
I'm sure I also read (although a lot of info has obviously gone in and out in the last few weeks...) that the DVLA have their own doctors as well, and can ask to review medical files and make their own call, and turn you down even if your consultant suggests you are fit to get your license back. As you say though, its somewhat down the priority list and is small fry in the grand scheme of things, its just a pain that I live in a part of the country where public transport is... sub optimal! I think the nearest trainstation is a 30min (12mile) drive away, and we don't talk about busses on PH obviously.. I am trying to be as pragmatic and emotionally neutral as possible and trying to not dwell too much on the what ifs, which is sometimes easier said than done.
I sincerely wish you all the best with your treatment going forward, and it has mentally helped me seeing your post so thank you for posting.
If you want to contact me privately then by all means do so.
Likewise, if you want to drop me a PM on anything, feel free- happy to share my email address if easier etc. I think its made me realise I'm almost certainly on some kind of a spectrum. Emotion hasn't really come in to it for me at all (so far at least, I'm sure it could be coming..), I'm just quite content just trying to get as many things lined up and organised as possible (up to the stage of making lists of lists now!), plus I'm still mostly full-time at work which I think is a blessing in terms of staying occupied and distracted.
The operation has now been firmed up for Monday the 19th of June, so not too long to wait in the grand scheme of things. All being well not a lot will change or develop before then. I just wish I could know or plan if its going to be a case of being out of action for a couple of days, or basically wiped out for months on end, but I guess every brain is an individual and fickle thing..even before there is something nearly the size of a mars bar taking up space that it shouldn't be..
Cheers,
Craig
crikey said:
I was diagnosed with a meningioma in 2013, grade 1 and slow growing, but it was putting pressure on my brain stem. Long story very short, 18 hour operation, bunch of rehab. It left its mark but I lead a pretty normal life now. I wrote a little “book” about it, happy to email a copy if you want.
Hi Crikey, sounds interesting, you should be able to email me via my profile if you wouldn't mind sending it over 
Thanks,
Craig
Unfortunately I have no kind of insurances/cover in place, but the main thing is I'm not going to starve at least well until the medium term. I've got 4 weeks full sick pay in any 12month period (and work are super awesome and already making noises about 'doing the right thing' after that) I have no intention of taking the mick, but hopefully by then we will be discussing some kind of pro-rata/part time/wfh arrangement.
I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)
Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
Edited by cRaigAl205 on Sunday 28th May 19:49
They don't half manage to obfuscate things though!! 
Thanks guys, it is appreciated. I recon (as far as its possibly to objectively analyse yourself..) the morale and "emotion" side of things is holding up pretty well. I've never put much stock in 'the power of positive thinking' (but not to the point of despair or defeat as an alternative), just that pity, worry or panic isn't actually going to improve my lot or, bluntly, make any difference to the outcomes and will just take up a lot of time & energy in the meantime.
It does help and provide comfort that everything they definitively know so far has been at the positive end of the spectrum (likely Grade, position, blood flow connections, even my age and general health all filter in), but ultimately if something similar was in my thigh rather than top & center of my skull we would be having an entirely different conversation in terms of risks of surgery and general outcomes. I also struggle with %'s and likely outcomes when you remember that a general anesthetic is enough to kill you if you react badly to it etc, or you could get hit by a bus on the way to the operation, but I suppose that further reinforces that worry isn't useful or relevant!
The only 'downer' at the moment is the ongoing symptoms (which in the grand scheme of things aren't that bad and are perfectly manageable), do act as a somewhat constant reminder. Fortunately the steroids have knocked the banging headaches and visual symptoms on the head and no sign of any more seizures, but I have been left with a fairly regular tremor down both arms (driving a mouse or carrying glasses of water certainly takes more concentration), as well as Bambi on ice balance and general coordination etc.
Still, only just over a couple of weeks to go, and plenty to keep me occupied with in the meantime, plus work is a boon in terms of having a 'regular' routine to keep me occupied!
Cheers,
Craig
It does help and provide comfort that everything they definitively know so far has been at the positive end of the spectrum (likely Grade, position, blood flow connections, even my age and general health all filter in), but ultimately if something similar was in my thigh rather than top & center of my skull we would be having an entirely different conversation in terms of risks of surgery and general outcomes. I also struggle with %'s and likely outcomes when you remember that a general anesthetic is enough to kill you if you react badly to it etc, or you could get hit by a bus on the way to the operation, but I suppose that further reinforces that worry isn't useful or relevant!
The only 'downer' at the moment is the ongoing symptoms (which in the grand scheme of things aren't that bad and are perfectly manageable), do act as a somewhat constant reminder. Fortunately the steroids have knocked the banging headaches and visual symptoms on the head and no sign of any more seizures, but I have been left with a fairly regular tremor down both arms (driving a mouse or carrying glasses of water certainly takes more concentration), as well as Bambi on ice balance and general coordination etc.
Still, only just over a couple of weeks to go, and plenty to keep me occupied with in the meantime, plus work is a boon in terms of having a 'regular' routine to keep me occupied!
Cheers,
Craig
unexpectediteminbaggingarea said:
It's hard not to think about the small percentages and focus on them, it's quite the emotional rollercoaster isn't it? Some days I rarely think about it and other days it seems all consuming and impossible to deal with. I read a story yesterday morning about one of the editors involved in 'Sex Education' and 'Catastrophe', I won't go into it here in detail (very advanced form) but I just sat and cried my eyes out.
I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
Yep, there are so many different directions and distractions to be pulled in it can be overwhelming. I'm finding to-do-lists and admin helps..! I had a call from my brain surgeon on Wednesday. There has been a bit of a delay in organising a date for my op. He wants to do it with an intra-operative MRI, so he can scan mid-op to ensure he removes as much of it as possible. The scanner at queens square is broken so they have been waiting to get confirmation from the NHS to allow it to happen at the private hospital in St John's Wood, which has now been granted. I think it will be 2-4 weeks but nothing confirmed yet.
It sounds like you are all ready to go Craig. Do they get you in for a pre-op or do you just go in for the op?
Edited by unexpectediteminbaggingarea on Friday 2nd June 08:14
I certainly found getting a definitive op date helped a lot, hopefully yours comes through soon. A friend pointed out with mine that while its a few weeks away, its still shorter than the max time they said it could be, and also that its not like they want to do it... tomorrow, which might have suggested a higher level of panic/urgency.
In what felt like an amazing and unexpected piece of forward planning, they did all of the pre-op assessment stuff during my first visit to the QE in Brum to meet the consultant, so all being well, bar perhaps a phone consult I should be able to just rock up on the day!
I'd also strongly advocate for the 'getting your affairs in order' stuff as well. There's a fair chance people are more organised than me, but as a mid-30s single, child-free adult male, while I didn't quite have a carrier bag with everything important stuffed in, it wasn't as good as it should be.
While initially a bit bleak to start thinking (and talking) about Wills, Lasting Power of Attorney Forms, DNR's etc, it does provide quite a lot of comfort and calm knowing a) everything would be as easy and friction-less as possible to administer and b) what I want has been made clear.
Cheers,
Craig
While initially a bit bleak to start thinking (and talking) about Wills, Lasting Power of Attorney Forms, DNR's etc, it does provide quite a lot of comfort and calm knowing a) everything would be as easy and friction-less as possible to administer and b) what I want has been made clear.
Cheers,
Craig
I've now received a copy of the letter from the clinic from meeting the consultant based on the thoughts of the MDT, which was apparently already over three weeks ago (where does the time go....? 
). It's interesting as to what felt like the takeaway/general tone from the face-to-face meeting and then seeing it in black-and-white. I suppose its not that surprising when hearing this sort of stuff for the first time, not all of it really goes in and sticks to a fully meaningful level. Plus I think the letter its clearly more 'broad' in terms of outlining the full range of possible outcomes and risks, which is fair enough as it is now officially 'on record'.
I guess my take away is it seems they are really only trying to get out as much as they can (reading between the lines, removing all seems to be off the cards already based on the MRI scans, its size & integration) which suggests that surely chemo or radiotherapy will be needed afterwards to nuke it to stop it just growing back? Both were of course mentioned as potentially required follow on treatments, but they seem more likely now. (both appeal less than the surgery TBH owing to the likely grim side-effects..). But I suppose that's what the biopsy/testing is for to establish if its aggressive.
I think on balance I'm still more "positive" than I could be, but it still feels like bit of a kick in the 'nads. Mainly because it seems fairly clear (to me anyway) they aren't going to get all of it out (or even necessarily try to do so), and its on the...large side (I like the use of the word 'colossal' as well..). I was of course aware of the generic risks of brain surgery, up to and including death & 'profound deficits', but I guess its the sort of thing you process slowly.
I suppose the biggest take away is the casual drop in of "subtle changes in work responsibilities based on impacts to non-verbal functions and visuospatial skills" .... So no more colouring in between the lines..? I think being honest I probably hold too much stock tying 'myself' and value and productive output based on job/career (I mean, it did take me nearly a decade to qualify as an Architect, so I think that's fair enough!?
) so risks to that seem a bit bleak and scary.
Still, time is barrelling along, and its only two more weeks now until the op date. I'm still getting all kinds of life admin and organisation bottomed out (as well as still working pretty much full time) so staying occupied shouldn't be a problem. Symptom-wise I'd say I'm feeling a bit worse as time passes (mainly minor stuff like tiredness, balance & coordination issues and pretty persistent arm tremors (the tablets have definitely helped with the headaches and no more seizures, so that's great). Its certainly manageable, but does act as a pretty constant reminder.
Anyway, I think this post is mainly for my own benefit just to get my thoughts out clearly, but I thought I'd chuck it out there as I've already benefited from the support on here. Will keep you guys posted as and when!
Cheers,
Craig
). It's interesting as to what felt like the takeaway/general tone from the face-to-face meeting and then seeing it in black-and-white. I suppose its not that surprising when hearing this sort of stuff for the first time, not all of it really goes in and sticks to a fully meaningful level. Plus I think the letter its clearly more 'broad' in terms of outlining the full range of possible outcomes and risks, which is fair enough as it is now officially 'on record'. I guess my take away is it seems they are really only trying to get out as much as they can (reading between the lines, removing all seems to be off the cards already based on the MRI scans, its size & integration) which suggests that surely chemo or radiotherapy will be needed afterwards to nuke it to stop it just growing back? Both were of course mentioned as potentially required follow on treatments, but they seem more likely now. (both appeal less than the surgery TBH owing to the likely grim side-effects..). But I suppose that's what the biopsy/testing is for to establish if its aggressive.
I think on balance I'm still more "positive" than I could be, but it still feels like bit of a kick in the 'nads. Mainly because it seems fairly clear (to me anyway) they aren't going to get all of it out (or even necessarily try to do so), and its on the...large side (I like the use of the word 'colossal' as well..). I was of course aware of the generic risks of brain surgery, up to and including death & 'profound deficits', but I guess its the sort of thing you process slowly.
I suppose the biggest take away is the casual drop in of "subtle changes in work responsibilities based on impacts to non-verbal functions and visuospatial skills" .... So no more colouring in between the lines..? I think being honest I probably hold too much stock tying 'myself' and value and productive output based on job/career (I mean, it did take me nearly a decade to qualify as an Architect, so I think that's fair enough!?
) so risks to that seem a bit bleak and scary. Still, time is barrelling along, and its only two more weeks now until the op date. I'm still getting all kinds of life admin and organisation bottomed out (as well as still working pretty much full time) so staying occupied shouldn't be a problem. Symptom-wise I'd say I'm feeling a bit worse as time passes (mainly minor stuff like tiredness, balance & coordination issues and pretty persistent arm tremors (the tablets have definitely helped with the headaches and no more seizures, so that's great). Its certainly manageable, but does act as a pretty constant reminder.
Anyway, I think this post is mainly for my own benefit just to get my thoughts out clearly, but I thought I'd chuck it out there as I've already benefited from the support on here. Will keep you guys posted as and when!
Cheers,
Craig
That does entirely make sense as I think it is top and center between the two hemispheres (from your link) "[The] callosum spans part of the longitudinal fissure, connecting the left and right cerebral hemispheres, enabling communication between them."
Quite a lot of reassurance for a Sunday morning, so thanks!
Quite a lot of reassurance for a Sunday morning, so thanks!
Thanks. Sometimes I worry that I might be too rational for my own good, and do fear with this that I'll have some kind of epic mid-life crisis response to it at some point when it really lands, but hopefully in true PH form it will take the shape of a wildly impractical and/or tragic car purchase or similar! 
You are very much correct with the strategies taken over from work- I try to work to and direct clients towards 'decision gates' wherever possible i.e don't try and decide or design everything at once, but instead focus on what you know and what is definitive. Seems to be helping so far at least!
Cheers,
Craig
You are very much correct with the strategies taken over from work- I try to work to and direct clients towards 'decision gates' wherever possible i.e don't try and decide or design everything at once, but instead focus on what you know and what is definitive. Seems to be helping so far at least!
Cheers,
Craig
Surgery is booked in for the 19th of June, and the pre-op stuff is all done, so subject to any additional strikes or emergency patients that bump me down the list, its not long to wait at all now.
Off to the hospital today for an eye test which was booked in following my initial stay- I think to review Intraocular pressure/ Glaucoma risks based on increased intracranial pressure- but hopefully the 'roids have been bringing that down.
Off to the hospital today for an eye test which was booked in following my initial stay- I think to review Intraocular pressure/ Glaucoma risks based on increased intracranial pressure- but hopefully the 'roids have been bringing that down.
Thanks guys, it is appreciated
Eye test clinic appointment was absolutely fine- field of vision and photography, followed by a chat with the consultant. Both optic discs are apparently bulging, but that is to be expected with the pressure etc. Other than that eyeballs are basically fine and as to be expected, no field of view or pressure issues whatsoever fortunately. Hereford (this was done locally rather than via the QE) are now going to discharge me and I can just get monitored by optician via annual eye test which I'm pretty hot on anyway TBH as I'm pretty paranoid/very short sighted!
They sensibly suggested getting an eye test/frame of reference on file before the op, so we can then monitor any change/improvement moving forward, so I'll get that done with the optician.
Next stop should be the OP now, nothing else booked in!
Eye test clinic appointment was absolutely fine- field of vision and photography, followed by a chat with the consultant. Both optic discs are apparently bulging, but that is to be expected with the pressure etc. Other than that eyeballs are basically fine and as to be expected, no field of view or pressure issues whatsoever fortunately. Hereford (this was done locally rather than via the QE) are now going to discharge me and I can just get monitored by optician via annual eye test which I'm pretty hot on anyway TBH as I'm pretty paranoid/very short sighted!
They sensibly suggested getting an eye test/frame of reference on file before the op, so we can then monitor any change/improvement moving forward, so I'll get that done with the optician.
Next stop should be the OP now, nothing else booked in!
Edited by cRaigAl205 on Friday 9th June 19:26
The novelty of feeling like crap warmed up is wearing off if I'm being completely honest. I think given the hot weather and general lack of sleep (and understandable stress/worry) I wouldn't be feeling great anyway, but I think the steroids are having a reasonable impact on mood, (and a few symptoms of the actual tumor are still coming through- but no seizures etc which is good), which is sapping enthusiasm. I've still been reasonably productive I think the last week or so, working up until yesterday, with the plan to have next week off as a minimum and then play it by ear.
I've heard from the hospital and they've found space on the ward for Sunday evening, which should massively simplify things compared to schlepping to the middle of Birmingham for rush hour Monday morning (via a lift because I obviously can't drive..!)
So its just a waiting game now really and trying to avoid overthinking/worry as well as trying to recharge battery and be as fresh as possible!
Will be back to update when I know more/am up and about the other side!! Thanks for the kind word guys and thoughts, it is appreciated.
Cheers, Craig
I've heard from the hospital and they've found space on the ward for Sunday evening, which should massively simplify things compared to schlepping to the middle of Birmingham for rush hour Monday morning (via a lift because I obviously can't drive..!)
So its just a waiting game now really and trying to avoid overthinking/worry as well as trying to recharge battery and be as fresh as possible!
Will be back to update when I know more/am up and about the other side!! Thanks for the kind word guys and thoughts, it is appreciated.
Cheers, Craig
Discharge from the consultant, positive news. Biopsy results next Thursday at clinic, referall to speech and language therapy on the way (super frustrating, its like a stroke in terms of prep & planning and getting words out edgeways!) (they checked and its all OK!) Responding quickly & positively!
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