Cyberknife NHS and 'normal' radiotherapy

[scotab]

Hi there,

I was wondering if anyone had any experience with Cyberknife on the NHS?

My Mum was diagnosed with pancreatic cancer in May 2011 and after chemo she was told that she was lucky enough to be able to have cyberknife treatment with the NHS. After many long journeys for scans etc etc she finally got her gold markers inserted. She was a week away from the actual event, (which by now was Jan 2012!!) her local oncologist was telling her that she might not have to visit her again and the people in the cyberknife hospital were telling her it was her only hope (she was very worried about it due to claustrophobia) and that she was really lucky. Enter the doctor in charge (who okayed it all at the start) to say that actually they can no longer do it!!!

It's almost like a diagnosis all over again. The only options now are 'normal' radiotherapy which will only control the cancer. The doctors seemed to close ranks and any reasons given for their change of mind very unclear. The tumor being too close to an artery - well that was always the case and they knew that. Too close to the duodenum - they knew that too. The markers have moved - cyberknife depends on these markers to work - surely they have got that part of a £££ system sorted?

Anyway, apart from a rant, I just wanted to know if anyone had had this happen or anything similar? Either privately or NHS? I am trying not to think that the NHS is only peforming 'easy' cyberknife treatments to make their figures look good-?! It is a new treatment centre and I know other hospitals are losing funding for this machine. There are also many many people campaigning and raising money for this treatment privately - are they being turned down at the last minute?!

My Mum really could have done without all the travelling, worry and poking and prodding, not to mention gold markers put in her for no reason. This has also delayed conventional radiotherapy and she is getting more and more pain now. Now she is worried that they will tell her she is too late for conventional radiotherapy (she's having kidney function test next week). She has not had any chemo now since November 2011.

Anybody have any experiences to share?

Thanks very much...

[rachelqt]

Hi Scotab,

I dont have any experiences with cyberknife but it is something that I have been reading up on and very interested in. Im very sorry to hear that you all had your hopes dashed, your mum was offered a potential lifeline only to be taken away. How frustrating for you all. My Dad was diganosed with inoperable PC (sept 2011) due to tumor wrapped around the vein. Cyberknife is something that seems to offer a little glimmer of hope against this horrible disease. I did not even think that it was an option for the NHS to offer it, as far as i was concerned it was private and expensive treatment.

There was a real life story on this website about about someone who received this treatment, it appears not to be on here anymore but you can see the story on Pancreatic Cancer Charity Uk Website. It might be worth reading, sorry I cant be of any help on this subject!

Hope your mum gets sorted soon with her treatment, she seem to be putting up a good fight!

Takecare...Rachel

[PCUK Nurse Jeni]

Hi Scotab,

Sorry to hear about your experiences with the Cyberknife treatment. Cyberknife is a much safer treatment than conventional r/t, as it is a lot more accurate. So, I am surprised with the reasons (too near vessels, duodenum etc...) However, it is a very powerful treatment, so that may be one of the reasons.

It would not be the case that they would only be doing "easy" treatments. Cyberknife is available to treat many cancer types, but not if there is any evidence of disease having spread outside the organ. It might be good to find out exactly why they could not do this, as it seems a real let down to your mum to be so near, and yet so far.

Rachel - Cyberknife is available in the UK on the NHS. There are at least 2 centres where this is offered. The criteria is quite strict in what can be treated, but it has been used to treat pancreatic cancer.

Kr,

Jeni.