Cyberknife and lung mets

Hi all I was turned down today for cyberknife on my mets at the moe no explanation as to why, they are hoping to get me a answer by tues I’m under the understanding it’s to do with funding , I know there are a few of us on here who have been turned down i am just intreasted to know if you know the reason why or are they saying just not a option ck is v good on lung mets so we need to try fight this decision thanks for y help Laura

Laura I have sent you a pm. Try and get the Marsden to give a written explanation, and come back to me.

Hi Laura,

My consultant referred from Sutton Marsden to the Fulham Road London branch where I saw the consultant. She sent me for a full spine MRI scan but was very slow getting back to me or my consultant after that. He was a bit surprised and chased it up for me. It seems they are not going ahead with the cyberknife treatment at this moment in time as my tumour is stable and the treatment would carry quite a risk as there was hardly any margin to the nerve canal. It seems they are prepared to reconsider should the tumour become active again. That all sounds a bit scary to me. Obviously there is quite a risk but the risk would be worse if the tumour did go on the move again even without CK. There has never been any question of finance being a problem.

Dawn
xx

Dawn, with respect, the funding of Cyberknife treatment is very much an issue, and both the Royal Marsden and Mount Vernon have gone on record in the national press to say so (three out of four patients are being refused funding for Cyberknife).
The situation is that the Marsden and Mount Vernon have what is known as a Tertiary Contract with the South East Coast Specialised Commissioning Group (SECSCG). What this means is that the SECSCG pay the Marsden and Mount Vernon to provide services that are not available (such as Cyberknife), within the area covered by SECSCG For more information about this please look at the following link. secscg.nhs.uk/home/tertiary-contracts/

Unfortunately, as of the 17th December 2010, the SECSCG concluded that there is no evidence to justify the additional cost of stereotactic radiotherapy (such as Cyberknife), and as such that it should only be funded in very limited situations. Even then, the type of stereotactic radiotherapy they will fund is Gamma-knife, not Cyberknife.
I have read one of your other posts, when you seemed to say that the Marsden has it’s own Trust, and therefore doesn’t need to apply for funding. That is an easy mistake to make, because the title Royal Marsden Foundation NHS Trust would seem to suggest that - but sadly when it comes to non-standard treatments like Cyberknife that is not the case.

Lemongrove with respect!! (why the sarcasm) I don’t think I have disagreed with it being an issue. I think the postcode lottery that raises its ugly head far too often in this country is absolutely appalling and those who find the energy to challenge this I have teh greatest respect for BUT I can only speak of my own personal experience which is what I was doing in my post above. Also with reference to the RMH having it’s own trust my reference to this was in fact a question I was asking and I quote… “Also I think the Marsden is its own PCT (does that make sense?) Would that mean they didn’t need to seek the o.k. elsewhere?” I have no idea how hospitals run their funding etc.

You must be putting a huge amount of your time into gathering all this information and using it to help others, but please don’t attack those of us who only find time to process information in dealing with our own particular area of this disease.

Dawn

Dawn I wasn’t being sarcastic (sorry if you interpreted it that way),
I just wanted to clarify the situation in a respectful way (which is why I said with respect).
Its’ just when you said there has never been any suggestion that finance is a problem, I was a little concerned that others may be led to believe there is no problem, when there is actually a very serious problem. Without knowing your situation, I would guess the reason that finance has not been mentioned as a problem, is because the Marsden did not get around to applying for it.
You’re a lovely lady, and a great support to me and many others, so I would never dream of being rude to you.

Hi all,

I too was unable to have cyberknife treatment. I am under the Marsden in Sutton too, my tumour is in my lung but unfortunately it was decided the tumour is too near the heart to treat it with cyberknife. Since then 2 more tiny ones have appeared in same lung. At the moment all is stable and they are quite pleased with me. Laura I do hope you get an explanation as to why you cant have ck. I was extremely annoyed to see that NICE have said that Faslodex can no longer be prescribed for BC Mets, I am on Letrozole and understood that when it no longer works Faslodex would be next down the line, they will not be stopping it for women already taking the drug, it really is getting quite frightening all these cutbacks etc. Dawn do hope you are not in too much pain at the moment and Laura I hope you get some answers soon.

Best wishes to you all
Marina xx

Thanks ladies I’ve gtg wed so we will know then I shall go forearmed to start my fight if need to thanks Lesley for all y help I’ll be in touch as soon as I know tc all Laura