mum has 4 brain tumours - questions..
Discussion
Hi,
10 days ago mum was diagnosed as having 4 brain tumours via a mri scan. a ct scan later showed no more in her body that they could see.
She spent 10 days in nhs hospital for them to come up with "she needs a biopsy"
we are told this takes 2-3 weeks.
She has full private cover but were told shes best being in the nhs system to start with.
Do you think we should try and get the biopsy done privately / will they or should we just stick with it as is.
nightmare at the mo as we just dont know the prognosis.
any help appreciated thanks
10 days ago mum was diagnosed as having 4 brain tumours via a mri scan. a ct scan later showed no more in her body that they could see.
She spent 10 days in nhs hospital for them to come up with "she needs a biopsy"
we are told this takes 2-3 weeks.
She has full private cover but were told shes best being in the nhs system to start with.
Do you think we should try and get the biopsy done privately / will they or should we just stick with it as is.
nightmare at the mo as we just dont know the prognosis.
any help appreciated thanks
I'm sorry, that all sounds terrifying, I can't imagine how stressed you must all be.
If they think she has cancer, pop on to the effing cancer thread, alas there will be several others there with close experience with brain cancers and what happens next.
There's no reason you shouldn't try to find out about your options in the private sector, and this isn't really my area of experience, but it's entirely possible that you do indeed want to stay with the NHS - acute situations like this is generally speaking what they're good at. There's no reason you shouldn't ring up your/her insurer and ask about your options, though, not least that knowing for sure that it really wouldn't have been quicker may help a bit with frustration down the line, if that is the case.
All the very best to you and yours.
If they think she has cancer, pop on to the effing cancer thread, alas there will be several others there with close experience with brain cancers and what happens next.
There's no reason you shouldn't try to find out about your options in the private sector, and this isn't really my area of experience, but it's entirely possible that you do indeed want to stay with the NHS - acute situations like this is generally speaking what they're good at. There's no reason you shouldn't ring up your/her insurer and ask about your options, though, not least that knowing for sure that it really wouldn't have been quicker may help a bit with frustration down the line, if that is the case.
All the very best to you and yours.
FlyingMeeces said:
I'm sorry, that all sounds terrifying, I can't imagine how stressed you must all be.
If they think she has cancer, pop on to the effing cancer thread, alas there will be several others there with close experience with brain cancers and what happens next.
There's no reason you shouldn't try to find out about your options in the private sector, and this isn't really my area of experience, but it's entirely possible that you do indeed want to stay with the NHS - acute situations like this is generally speaking what they're good at. There's no reason you shouldn't ring up your/her insurer and ask about your options, though, not least that knowing for sure that it really wouldn't have been quicker may help a bit with frustration down the line, if that is the case.
All the very best to you and yours.
thank you for the kind reply - will check out the other thread tooIf they think she has cancer, pop on to the effing cancer thread, alas there will be several others there with close experience with brain cancers and what happens next.
There's no reason you shouldn't try to find out about your options in the private sector, and this isn't really my area of experience, but it's entirely possible that you do indeed want to stay with the NHS - acute situations like this is generally speaking what they're good at. There's no reason you shouldn't ring up your/her insurer and ask about your options, though, not least that knowing for sure that it really wouldn't have been quicker may help a bit with frustration down the line, if that is the case.
All the very best to you and yours.
Awkward to do a biopsy on many kinds of brain tumour, for obvious reasons: Can't just take a little sample before lunch! Well, not generally anyway. Often a surgeon will excise the tumour then the biopsy will be performed. Maybe a surgery slot didn't become available over the three week period?
Hi OP, I'm really sorry to read this, it's a truly terrifying experience. As you say, worst bit is the not knowing. We went through glioblastoma wth my dad some years ago.
Our personal experience was that surgically the NHS was absolutely incredible (Adenbrookes neuro). Took a little while to get to that point (I'm talking about a few weeks also) due to surgery slots, and in our case scans were a little inconclusive to begin with so they re-did a few to make totally sure what we were dealing with.
We asked about going privately to expedite the process and were told that realistically it wouldn't make a difference. We didn't have private insurance to ask, but I see no harm in confirming with your insurers whether they think that's a viable option or not.
Every case is very different, that became apparent with a little googling, and I hope they're keeping you updated with info as an when they know. For us that was the most important thing initially - timely information to allow us to make choices.
Not sure where you are, but if I can help in any way, even if it's just someone just to vent at please don't hesitate to PM.
Our personal experience was that surgically the NHS was absolutely incredible (Adenbrookes neuro). Took a little while to get to that point (I'm talking about a few weeks also) due to surgery slots, and in our case scans were a little inconclusive to begin with so they re-did a few to make totally sure what we were dealing with.
We asked about going privately to expedite the process and were told that realistically it wouldn't make a difference. We didn't have private insurance to ask, but I see no harm in confirming with your insurers whether they think that's a viable option or not.
Every case is very different, that became apparent with a little googling, and I hope they're keeping you updated with info as an when they know. For us that was the most important thing initially - timely information to allow us to make choices.
Not sure where you are, but if I can help in any way, even if it's just someone just to vent at please don't hesitate to PM.
Firstly, sorry to hear this. Unfortunately, EVERY case is different with brain tumours. I had a 3.5x4cm one removed in December 2014 - was a bit of a rough patch (OK, slight understatement) after surgery, but things are considerably better now.
Location of tumour(s), age, health levels in general etc all play a huge roll in recovery.
Best of luck.
Location of tumour(s), age, health levels in general etc all play a huge roll in recovery.
Best of luck.
Went through this with a family member some years ago. It's not at all easy for family or patient.
Re: NHS v. private, we did find that keeping the (brain tumour) patient with the NHS but finding him a private room at the hospital, paid for by BUPA, was a big plus during treatment and recovery. The care was no 'better' but the room was quieter and a nicer place to be than the ward.
I thought that this was important during chemo, as chemo patients on open wards were judged to be more susceptible to infections, especially given the large numbers of visitors in wards these days.
BUPA OK'd it over the phone with the ward staff within minutes and he was moved immediatly.
You might also have the option of NHS care at a 'private' hospital, my local NHS trust gave me the option of three local hospitals for a couple of recent ops, one of them was a private BMI place, and so I went there. So do ask.
Anyway, best wishes for the outcome.
Re: NHS v. private, we did find that keeping the (brain tumour) patient with the NHS but finding him a private room at the hospital, paid for by BUPA, was a big plus during treatment and recovery. The care was no 'better' but the room was quieter and a nicer place to be than the ward.
I thought that this was important during chemo, as chemo patients on open wards were judged to be more susceptible to infections, especially given the large numbers of visitors in wards these days.
BUPA OK'd it over the phone with the ward staff within minutes and he was moved immediatly.
You might also have the option of NHS care at a 'private' hospital, my local NHS trust gave me the option of three local hospitals for a couple of recent ops, one of them was a private BMI place, and so I went there. So do ask.
Anyway, best wishes for the outcome.
Edited by Slushbox on Monday 29th August 19:12
thanks all - it was being on the ward for 10 days that was horrible as she literally could not sleep and thats the last thing she needed. there are no private rooms at torquay though so had no choice 
hopefully will be in plymouth if thats where she has the biopsy done.
did anyone look at scooping them up and sending them to a london hospital etc ( looking at the london oncology centre online )? whats the feelings on alternative treatments?
hopefully will be in plymouth if thats where she has the biopsy done.did anyone look at scooping them up and sending them to a london hospital etc ( looking at the london oncology centre online )? whats the feelings on alternative treatments?
petemurphy said:
thanks all - it was being on the ward for 10 days that was horrible as she literally could not sleep and thats the last thing she needed. there are no private rooms at torquay though so had no choice hopefully will be in plymouth if thats where she has the biopsy done.
did anyone look at scooping them up and sending them to a london hospital etc ( looking at the london oncology centre online )? whats the feelings on alternative treatments?
RE not sleeping. I was in hospital for 5 weeks or so post-op. Never slept properly once. hopefully will be in plymouth if thats where she has the biopsy done.did anyone look at scooping them up and sending them to a london hospital etc ( looking at the london oncology centre online )? whats the feelings on alternative treatments?
Alternative treatments....totally depends on type of tumour etc. It sounds "lucky" (I use that term very loosely, of course) they can biopsy before any treatment. The only experience I've had with myself was "we'll biopsy it when it's out, there's no other way to know exactly what it is beforehand"
petemurphy said:
shes just had phone call has to go in for assessment today for biopsy tomorrow morning
not sure if thats good or not
It's probably actually neutral - a slot came up, they rang up the next person on the list who's due, then kept ringing people until they got someone who answered the phone/could do tomorrow/is not currently too poorly/doesn't need weaning off their warfarin first or whatever. not sure if thats good or not
But when you need to find out about something that might be nasty, you want to do that finding out ASAP. So room for a bit of positive spin, I suppose, at least?
Very best to her for tomorrow.
FlyingMeeces said:
It's probably actually neutral - a slot came up, they rang up the next person on the list who's due, then kept ringing people until they got someone who answered the phone/could do tomorrow/is not currently too poorly/doesn't need weaning off their warfarin first or whatever.
But when you need to find out about something that might be nasty, you want to do that finding out ASAP. So room for a bit of positive spin, I suppose, at least?
Very best to her for tomorrow.
thanks i suppose i know its best was nice just having her back for a little while. fingers crossedBut when you need to find out about something that might be nasty, you want to do that finding out ASAP. So room for a bit of positive spin, I suppose, at least?
Very best to her for tomorrow.
Not sure if this is good reply or not, but might be worth taking a quick download/read of a book by Henry Marsh called 'Do No Harm'
He's a brain surgeon and he's gave short snippets about the different types of tumours. Each story is only 3 or 4 pages long so easy to get through a few and he talks about some good questions to ask the surgeon and what to expect etc.
I wish your mum all the best
He's a brain surgeon and he's gave short snippets about the different types of tumours. Each story is only 3 or 4 pages long so easy to get through a few and he talks about some good questions to ask the surgeon and what to expect etc.
I wish your mum all the best
ikarl said:
Not sure if this is good reply or not, but might be worth taking a quick download/read of a book by Henry Marsh called 'Do No Harm'
He's a brain surgeon and he's gave short snippets about the different types of tumours. Each story is only 3 or 4 pages long so easy to get through a few and he talks about some good questions to ask the surgeon and what to expect etc.
I wish your mum all the best
thanks will doHe's a brain surgeon and he's gave short snippets about the different types of tumours. Each story is only 3 or 4 pages long so easy to get through a few and he talks about some good questions to ask the surgeon and what to expect etc.
I wish your mum all the best
I'd hold off reading anything until you know what you're dealing with, that's a very good book but best read after the event, and don't start Googling things. As others have said every case is different so much of what others have been through won't apply, so best wait and see what's what and seeing what does.
I was diagnosed with a brain tumour a few years back and have written an account of what I went through, around the same time E38Ross was also diagnosed with a brain tumour and wrote about his experience on here, so there are people around who have been through it on here and are willing to share their stories and help in any way, as will others. But as I say, best to wait until you know what you're dealing with first.
I hope everything goes well today and in the future.
I was diagnosed with a brain tumour a few years back and have written an account of what I went through, around the same time E38Ross was also diagnosed with a brain tumour and wrote about his experience on here, so there are people around who have been through it on here and are willing to share their stories and help in any way, as will others. But as I say, best to wait until you know what you're dealing with first.
I hope everything goes well today and in the future.
When my mother was diagnosed with cancer I struggled.
What I learned. The NHS is very very good - when it comes to the important things they are really good.
Google ? just dont. its not the answer. There is so much information out there and if you are looking for answers its so easy to 'guide' the answers towards what you are looking for. Also there is so much bumf out there as it is unregulated. You going to believe google and doubt answers being provided by consultants ?
getting a private room, very good idea as when going through chemo it is very demanding on the body and picking up some form of illness isnt what you really want. Also go with the patient, if they dont want visitors then dont let folks visit. chemo is grueling indeed and most wont want to have to see visitors when they are at their lowest ebb. keep an eye on yourself and ensure that you dont run yourself down. my mother was through in ayrshire and I was in edinburgh not to far but when your doing it several times a week and working aswell as family duties you get low and pick up all sorts of illnesses. not what you want when visiting someone who is already very ill.
Be realist, take in what you are being told, Cancer is a terrible disease, it gets in and destroys people. be there for those in the family and work together as thats the only way that you will fight this.
I lost my mother to cancer, and my father had cancer a few years later and they were able to resolve that through chemo and an operation.
Hope that it all works out for you and that the results come back clear.
What I learned. The NHS is very very good - when it comes to the important things they are really good.
Google ? just dont. its not the answer. There is so much information out there and if you are looking for answers its so easy to 'guide' the answers towards what you are looking for. Also there is so much bumf out there as it is unregulated. You going to believe google and doubt answers being provided by consultants ?
getting a private room, very good idea as when going through chemo it is very demanding on the body and picking up some form of illness isnt what you really want. Also go with the patient, if they dont want visitors then dont let folks visit. chemo is grueling indeed and most wont want to have to see visitors when they are at their lowest ebb. keep an eye on yourself and ensure that you dont run yourself down. my mother was through in ayrshire and I was in edinburgh not to far but when your doing it several times a week and working aswell as family duties you get low and pick up all sorts of illnesses. not what you want when visiting someone who is already very ill.
Be realist, take in what you are being told, Cancer is a terrible disease, it gets in and destroys people. be there for those in the family and work together as thats the only way that you will fight this.
I lost my mother to cancer, and my father had cancer a few years later and they were able to resolve that through chemo and an operation.
Hope that it all works out for you and that the results come back clear.
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