I decided at my clinic appointment today I would press for a senior oncologist and bring up the subject of cyberknife and if I could benefit from this treatment for the para spinal mass I have on my lower spine. Thanks to Lemongrove, and all the info/links she has given us I felt reasonably well informed, and was staggered that the consultant! really knew very little about this. But he was concerned that there could be a problem with NHS funding (where have we heard that one before). Cutting long story short - he went off to make some enquiries and came back AMAZED to tell me that the hospital (Sutton Marsden) were having this machine as from 25th July and it was for NHS patients!!! My case has gone forward for a meeting tomorrow and I should hear within the week, and a specific MRI scan will be arranged. He has, of course, told me not to get my hopes up too much, but it does sound promising. I feel having lived with increasing pain for the past 3 years that I just don’t want to keep on increasing pain meds - and falling asleep so much. I think I have tried everything and none of it has worked and I really would like to live out what years I have left pain free!
Hi Dawn
I will keep my fingers crossed for you - I thinks its fantastic that you have taken control of things (I’m afraid I’m a bit of a nodding dog at the moment ie I just say yes to whatever they’re telling me. Your comments make me realise how important sites like this are,not only for support but knowledge)
Dawn,
Well done with bringing it up, sounds like the right approach for that particular tumour so hope you get the go ahead and it sorts the pain out, fingers crossed!
Love JUlie x
That’s great news, and shows what a bit of persistence can do.
Don’t know if you saw the Daily Express Article a couple of days ago, but the National Radiotherapy Implementation Group (a Government Advisory Group), have said that if stereotactic radiotherapy such as Cyberknife was more widely available it could save around 3,200 lives per year express.co.uk/posts/view/256450/CyberKnife-could-help-thousands-with-cancer
The NRIG have recommended that Commissioners fund stereotactic radiotherapy, and the report was meant to inform the NICE decision, but NICE are now having talks with the Department ofHealth, and the worry is that they might be trying to delay, or water the recommendations down… so watch this space.
I have realised I was updating this in the bone-mets thread! So to update here - I went ahead with a full spine MRI at Fulham Road Marsden back in July. Then all went quiet so I contacted my onc in Sutton - he was puzzled that there was nothing on their system other than it was a decision of ‘not now’. He wrote to them to ask for further explanation and I received a copy of their reply today.
It seems that they don’t consider it safe as things are to go ahead with cyberknife because “… discussed the fact that to give her a margin on the visible MRI detected disease, we would have difficulty with Cyberknife excluding the central neurological tissue in the canal, raising the possibility of radiation induced damage without necessarily any benefit”.
They also said that as I had already had 2 rads treatments to the area without any noticeable ilmprovement, a third treatment (cyberknife) should be reserved for evidence of progression in the area causing problems. I guess if I have progression there then they consider it will be worth taking the risk of damage to the central neurological tissue!
That all makes good sense to me, and the good news bit was that their MRI scan of the whole spine showed entirely stable disease. I just have to put up with the pain and take as much pain relief as I am happy with :(.
Dawn, it sounds good that you are stable! Also that Cyberknife may be an option in the future.
Can I urge everyone to google their local MP and then e mail them asking about Cyberknife and ask why it isn’t more widely available in the UK? I did a couple of weeks ago and my MP (She’s a Tory) wrote to me straight away to say that she would be raising it with the Health Minister! She is going to let me know what he says too!! Pressure like this will pay off if enough of us do it.