Bit jittery this week as I go in for my op next Tuesday to try to remove the tumour from the artery. I have found out that this cancer responds to something called a proton blaster, or proton therapy. Guess where, the good old USA. Why have we not got at least 1 machine here? It is very successful. Another method, which I have not been told about by my consultant is Gamma Knife, again successful. There is one in Sheffield. Is this the post code lottery we are told about? We should be lobbying our MP's right now for one. Without sites like this I do not know what I would have done as very little is known about this tumour. Has anyone had this treatment here?
Chris C
FormerMember
Good luck for next Tuesday... Will be thinking of you all the way from little New Zealand. xxxx
Hi Christine - firstly, I hope all goes well with your operation. Reading your previous blogs, I do so agree on that some medics can be so blase when delivering bad news. My partner, John, was told in January by an ENT specialist, and I quote "You have cancer but we don't know the primary source". We could have told HIM that as we already suspected that John had cancer so we went home, no further forward with the diagnosis and worried sick.
John went downhill very quickly after that and was taken to hospital as he started to have seizures. We were told in February by a wonderful consultant from Addenbrooke's that John has a very aggressive nasal tumour with mets to brain, lymph nodes and bones in lower back. The brain tumour is inoperable and the initial prognosis was poor. I mentioned Proton Therapy to the consultant as it has been a successful treatment abroad, however I was told that this is only used on very small tumours and patients are normally sent abroad for treatment.I did not get the impression that this happens very often. I do not know why this is as I understand that there is treatment centre in Cheshire somewhere, however I have found out that the treatment cost is very high and therefore is not widely available, if at all. I also asked the consultant about another treatment for brain tumours being used in the US and he did not seem to know much about it - no plans to bring it to the UK anytime soon then!
I think that this is disgraceful, why should cancer sufferers be denied this, and other treatments readily available abroad, which could save more lives, purely because NHS money is not, or so it appears, being utilised correctly. Too many Chiefs, not enough Indians - don't get me started. I have long suspected that the postcode lottery is indeed a factor in determining treatment availability, and only PCT's with plenty of cash would recommend expensive treatments. Lobbying MP's is a brilliant idea, maybe something to discuss downline? Money paid out for some of their more outrageous expenses claims could surely be put to better use. I do so feel for you, I hope your op is successful.
Fortunately for John, he can have chemo and radiotherapy and is responding well at the moment. If these do not work, however, there does not, currently, seem to be an alternative treatment available in the UK. John's cancer is apparently very rare and generally found in older people (which is why the ENT specialist did not suspect that it was present), and particularly those who work with wood. John is a carpenter/joiner, don't think the chemicals they use help much either. The fact that it is rare, and, as with you, not much is known about it, does not really help, does it? Knowing that other treatments could help, or at least be tried, but are not available, is little comfort either. All I can say is stay strong and positive and I hope that you can kick your cancer to the kerb. As for your GP, find another one!!
I have been busy digging as know no one here seems to know much. Firstly I have found, some tumours that do not repsond to chemo or radiotherpy respond to Gamma knife. This is more pin pointed, there is a NHS one in Sheffield. I know someone who was lucky enough to have private med cover, he had a cs like me in his head and had gamma knife in The Wellington hospital, St John's Wood. That was 1 year ago. Why do OUR specialists not know about such things??? Also the Proton blaster has been used a lot in USA with good results. There are others though nearer to home, there is one in Sweeden, Germany & Paris. Go onto the net and put in Proton blaster I think the hospital was something like Madam Curier, a friend of mine found it. I think the hospital you might mean is The Christie hospital in Manchester. Apparently NICE have not approved the proton yet, well if they did there homework and bothered to research the cases in USA I think they would be very suprised how good it has proven to be. But that might mean having to buy one right? I am certaintly going to persue this further.
Do you have the name of his tumour. Go onto Cancerbuddies site it is full of fab info. Thats where I started. As for my GP I want to face him and say "you know what? you know nothing"
Hi Christine - thank you for your reply and for tip about Cancerbuddies. Will check it out.
Just wanted to say GOOD LUCK for tomorrow, will be thinking of you. Will look out for your blog after your op!! Stay strong and positive lol Angelus xxxx.
