I have read a lot about this machine, there are not many in the country, it’s mainly used on people with Brain tumours as it’s a very narrow beam. A marvellous machine. Unlike radiotherapy which uses a broad beam and can affect organs in the body, maybe not straight away, it could take months or even years, still better than no treatment.
I asked about this therapy, but was not included in my stampede trial at the time.
If you search NHS proton beam there is quite a bit of info. Looks like two NHS cancer centres for PB and as Joes has said is used for certain difficult cancers incl brain
You should be fine with EB but if you really want PB go private as there are centres if u are prepared to pay
I've just finished a course of proton beam on my larynx, first couple of weeks fine, and as it had been explained to me each day it would pump more in for a shorter period of time which they did , the difference is they can pump it in and it goes no further if that was the case I would of had top of spine problems, everybody is extremely confident and made to make u feel at ease, got to wait another 2ish weeks , even though my beam therapy has finished I was told it will be working for a couple of more weeks, so it's touch wood for me if they had lasered I could of lost my voice completely, smart bit of kit it drops the beam (proton beam)right were its needed, just need to recover now. I ain't gonna lie this take the stuffing out of u, peace love and good wishes to you all.
I expect to start Proton treatment in London before Christmas.. It is not cheap, but for me is completely to be preferred to the Photon treatment on offer on NHS. In part my choice is made because of the clear benefits of the alternative on offer, but also, in part because of the patent ineptitude and secrecy of the NHS system within which the medics have to work. My earlier posts may provide an indication of my thinking, and everyone of us should make choices based on their levels of engagement in the processes on offer. I can give more information if wanted.
I can remember your extensive research into this Crippo2 and the 'debates' you have had with the medical profession. All the best for your treatment at the end of the year and please keep us informed on your progress.
I thought I would check out where we can access proton therapy in Greece and the one and only hospital is the one which is treating hubby and has an excellent reputation as being one of the top hospitals in Europe with 760+ doctors. Reassuring and yes, they do have experience with using it for prostate cancer.
This raises a very good point Ulf. Most trials assess either overall survival or time to recurrence when evaluating how effective a treatment is whereas what many want to know is how normal a life will I have once my treatment is over, especially for those on a curative pathway. Crippo has done extensive research to ensure that he has the best treatment for him but I think he is in the minority in the UK in investigating the machines and experience of the radiographers or surgeons which can have an impact on the final outcome. Questions and challenges to find out the information are not encouraged. The UK has some of the best centres of excellence when it comes to cancer treatment but it can be a postcode lottery if you have access to them on the NHS. We are our best advocates but many are discouraged when we ask questions and don't get reasoned answers and the attitude from the experts is that the doctor knows best.
To make what they offer fit what you need, you will need to ensure that the treatment they can offer includes all the body parts believed to be infected as well as those which experience indicates may be.(In my case locally advanced with a possibility of pelvic node involvement requires more treatment (and possibly mechanical) sophistication)
Investigate, particularly their history (ask for details of patients previously treated - or get them to ask those patients to contact you - so you get a better understanding of their skillset) and, I know I keep banging on about this, get hold of the Bob Marckini book and learn much of the principles he espouses (you do not have to retread his path),so you can get all your ducks in a row and then make your choices.
It takes time and effort, but in my case it really seems to be worth it.
