We Talk Brain Tumours

Charlie, thanks for the message mate, appreciate it.

Really sorry to hear about your missus' diagnosis, sounds like things are going well and you're all staying positive which is the main thing I suppose. You probably feel as if you're not being much help at times but believe me, just having people around you doing normal every day things truly is a massive help .... how long has it been since diagnosis now if you don't mind me asking?

I know what you mean about the gradings, in many ways I'm one of the lucky ones with a grade 2 (if you can call it that?) and it's encouraging to hear your story of a grade 3 .... the consultant has confirmed it's slow growing and fairly small so it's not of any immediate risk to me, apart from the seizures which are not quite under control.

I'm with Barts at the moment, have just got back from the GP and asked for a referral to the National Hospital for Neurology and Neurosurgery for a second opinion. The consultants fear is that if operated on I could lose some movement down my left hand side, he said that only a partial resection would be possible and that the amount he could remove would probably not be worthwhile. He didn't give me a percentage as to what could be removed even when asked, the question was glossed over which is the main reason for me wanting a second opinion, nothing like ignoring a question to dent somebody's confidence.

The 'wait and see' option, while I'm not totally against it, I'm not 100% happy with it either (if that makes sense). Obviously if they'd rather not run the risk of losing movement while I'm still active and on my feet then fair enough and if I'm told this by a second consultant I'll go with it. Recently I've read a lot of stories of people seeking second opinions to find that a supposedly 'inoperable' tumour was actually removed by another surgeon just down the road. I'm no Neurosurgeon, far from it, but I've seen the scans, the tumour is on the surface so in my mind is easily accessible.

I think in many ways I would prefer to be told the same thing "treat early with the most aggressive treatment available" and I'd be more than open to that idea. I'm only 31 (feel and act about 21), 6' tall, 14 stone, play loads of sport and am physically fit, I'm sure I would be a perfect candidate for radiotherapy and all they can hit me with to be honest.

It's just so confusing, you read and hear so many differing treatment plans and it's strange that all consultants don't work to the same protocol.

Anyway, not giving up yet and carrying on as normal, other than the not driving bit which is becoming a pain now and I'll be sure to post on here with any updates.

Hi Martin where abouts is your tumour located ?  Did the drs say why it is inoperable Julie xx

Hey Martin_P

Our neurosurgeon told us that all brain tumours are operable, but it is the level of risk that must be assessed and the potential consequences of interfering with good tissue which may cause the damage afterwards.  I know with MrSG's AA3, it has lots of 'tentacles' which made de-bulking it 100% impossible.  They managed to remove between 50-70% which left somewhere in the region of 30-50% remaining.

Are you hopeful that a 2nd opinion may suggest surgery? - its such a tough call and we hope that these professionals know what they are doing when they make their recommendations, but a 2nd opinion is always worth pursuing if you think it may help

x  

Julie, it's in my right parietal lobe, I'm just not sure if he's looking at it as more of an option when the tumour is actually carrying more threat? Things aren't being explained properly to me, I've done enough research to know the medical jargon related to tumours now so understand exactly what I'm being told when I'm being told.

I'm just interested in seeking a second opinion to see firstly how two consultants compare and also the level of information and feedback I'm going to get on my questions ..... obviously surgery is the preferred and most successful route as far as I can tell, if it carries serious risks then I'll re-evaluate and probably go along with the 'wait and see' option for the time being.

I think it's a very personal choice when it comes to an illness of this kind, if you haven't got 100% faith in your consultant it's going to have a mental affect I'm sure so I'd just like to explore the options early on and settle on a course of action from there. The consultant hasn't actually said what he'll do when the tumour does start posing me problems - as mentioned previously he's briefly mention radiotherapy but only when pushed.

I also like the idea of the medical trials being offered at NHNN potentially being future options but as this is all new to me I'll obviously reseach whatever I can.

Julie, I hope the operation for Mr. goes well on the 8th, that's the day after my 32nd birthday, I'll be thinking of him and sending positive thoughts his way. Also hope Mr SG is keeping as well as can be and that the family are all coping okay.

I'd be very wary of websites and doctors online with claims of cancer cures.  Even though someone can create a website and reearch/testimonals that look inviting, it's just words when there's nothing concrete to back it up.

To my way of thinking, the NHS have the best cancer care available in the country and anything outside of that is potentially not good enough or unsafe, or is a snake oil merchant just wanting to separate you from your money.

Personally, I trust my oncologist to give Ali the best care available.

I'm sorry if I sound harsh, but I'm just being pragmatic.

Lessons for the day

1)  Never underestimate the power of glide sheets to dump a patient onto the floor in the most undignified way possible.

2) A badly anchored transfer board offers a patient a certain one way trip to the ground.

3) Never underestimate the ability of patients to use sarcasm in the most undignified positions.

4) When going to the oncologist clinic, always be aware of where the nearest snack bar is, especially with a patient on a raised Dex dose.

Martin

Ali had a new type of real time scan treatment during her craniotomy three years ago. It was reported on the BBC website http://news.bbc.co.uk/1/hi/health/8118579.stm I think that this procedure helped to maximise the safe removal of the maximum ampount of the tumour. This was followed by six months of combined RT and chemo and six months follow up chemo which has resulted in "no recurrent materials" scan results. This doesn't mean no tumour, just nothing that is growing and this is probably as good an outcome as you can get. I understand that this type of surgery is very rare in the UK and so it may be worth asking about. There were risks with the surgery in Ali's case as you can see in the article but for us it has been worth it. She now runs, does keep fit and went skiing with the rest of the family earlier this year and is leading as close to a normal life as possible. I hope this helps.

Charlie 

Hi Martin

I have'nt posted here before , I'm so sorry that you have to be here its a scary whole new world is'nt it? I'm in another brain cancer group..diffuse pontine glioma...which is an inoperable and as yet incurable peadiatric tumour in the pons. My beautiful 6 year old daughter was diagnosed mid April...but reading some of your messages I just wanted to come in.

She's had her 6 weeks of RT at the Marsden..amazing place! and hopefully there will be a clinical trial starting there within the next 6 months so we just wait and hope and pray she can hang on...but she is well and leading pretty much a normal life which is the main thing. Actually the Molly Lane Fox unit at the NHNN you mentioned  was a little girl who died of pontine glioma just 7 months after diagnosis.

Given her prognosis you can't help but start on your own research, I think its easy with illness to end up on some crusade for cure...but in her case there really is'nt one. I can remember feeling to that maybe someone else would say something different but as time has progressed I've come to realise that perhaps consultants have an innate talent for giving you information at the right time. Ours has assured me that when the time is right we will go through anything and everything worldwide that may be worth a shot when all NHS options are exhausted.

In our desperate search for any cures I to came across the antineoplaston therapy at the Burzynski clinic in Houston...he appeared to have one patient who recovered from a pontine tumour and obviously patients who had recovered from other tumours to. I even contacted them and received the costings for an international patient to be included in the trial. Its not cheap and its HIS trial...not funded by any American Cancer Institute least of all underwritten by the FDA!!! Our consultant told us the bloke is a billionaire!! and the FDA invite him to meetings as a little joke..almost!!...there is a lot of conflicting advice on his treatment...my feeling from our consultant was definitely that he may have had a few lucky statistical exceptions! and thats all it is!

I believe myself that the cure for all cancers will be personalised medicine ...tissue samples with tumour vaccines made specifically for those tumours and immunology certainly appears to be heading that way. Have you checked out Dr Lentz at the Immunolgy Group in Germany..its referral only and removes all the TNF cell inhibitors so that to kick start an immune response for that moment that the cancer cells become visible...almost like a dialysis treatment...that to sounds interesting and maybe a viable option for my daughter anyway. I to am no cellular biologist but he certainly seemed to be well respected at the Marsden.

I know you were'nt just about to part with your hard earned cash or remortgage to go to Houston...but I just thought I'd give you the heads up on what we'd heard about him.

I wish you well it it sounds like you're doing really great

Amanda x

Amanda,

Oh yes, it is truly terrifying, when I was first told I just broke down (that was without the biopsy results and prognosis), I've never been ill in all my life, other than the odd cold and chicken pox when I was young, what a shock it was! I've come to terms with it now and getting used to the idea. I haven't stopped researching to increase my own understanding since coming off the steroids (when reality kicked in again), knowledge is power after all.

My heart goes out to you also, it's heartbreaking when you hear about children going through these things and it must be so difficult to remain positive - I can't begin to imagine where you get your strength from. I have a niece the same age as your daughter, it's not the same as your own child I know but I'd throw myself in front of a bus to protect her. I was reading the thread you were discussing your daughters tumour on last night actually, it truly is a wicked and indiscriminative illness.

Please try to remain positive Amanda, I know it's hard but children hate to be treated any differently, just try to keep a smile on her face - she sounds so brave and you must be so proud of her.

AAAAghhhhhh....steroids!!! the nasty Dex word!!! You must be a tad larger on the rugby pitch now ;)))...used to live there actually , Rugby I mean.I digress.

Thanks for the reply Martin...it was partly because you mentioned taking your mum to one of your appointments that made me want to come in...for what its worth I know how she feels, we're all someones baby,..you're just a bigger one!!!...and my only consolation is that  my little girl does'nt fear this, her perception is completely different.

 If your mum needs to talk you should get her on here to I never thought I'd need to spill my guts, especially to strangers but it does certainly help!...and you're right we'd all cop it in an instant for our kids... and that was another thing you mentioning about having kids..I was always one of those there was never going to be a right time hence I was 37!!...a young 37 tho ;))...but all I can tell you is that if I'd known the extreme joy they can bring I would have done it a lot sooner! I will always be grateful for the joy that Abbie has bought me and although someone in their great wisdom decided to give me a child with cancer...**** only knows why???? s'cuse my french! if it is only 7 years I will always be happy that I had those years rather than none at all...so if you feel its right don't wait x

People must tell you you're strong? the fact is we have no choice in the matter and it just becomes a different way of living, acceptance is such a huge ask so the fact that you've come to terms with it shows real character...and at least that way you have some peace with it, it takes way to much energy to be in constant denial and stay angry...or at least thats my thoughts.

Kids become the center of so many lives, the ..give your mum a hug from me she must be very proud of you to.

Amanda x