Went up to Charing Cross Hospital today, and my lovely Oncologist informed me that they are getting Cyberknife. This means we will shortly have four NHS Hospitals in London (Mount Vernon, The Marsden, Barts and Charing Cross), able to offer Cyberknife to NHS cancer patients. It is absolutely essential therefore, that we as cancer patients challenge the funding ban. It cannot be right that the NHS spend millions on acquiring Cyberknife, but cannot treat patients who need it, because only 28 PCT’s fund patients to use it.
I’m sorry if I’m irritating others by constantly going on about this, but if doctors think this technology is important enough that they are clamouring to buy it, why are we allowing faceless bureaucrats within PCT’s effectively veto usage ?.
Not irritating at all Lemongrove! I admire your drive to raise awareness of this issue, well done for the telegraph article, it read very well,
Do keep banging on and informing us - please! I’m seeing my Onc on Thursday about referral for second opinion on Cyberknife so it’s really good to have this up-to-date info about availability to share with him.
Fran
That is excellent news and do keep banging the drum - I hope the news from your onc was just as good. PM me if you have time.
finty x
Excellent news!
Thank you for your dedication. It’s not irritating at all.
Your belief, your passion really does put me to shame!
I’m so pleased for you.
Welshgirl x
Really good news. Thank you for campaigning and for raising awareness.
Lemongrove
Keep on going! We need Cyberknife to be accessible to all cancer patients who would benefit from it. I read in the ST article that only 26 NHS patients so far have had Cyberknife treatment. I wonder how this compares to the number of treated private patients?
You’re doing a wonderful job.
Nikki x
how do we find out if it is suitable for us?
Hi all!
You are not banging on about this issue, Lemongrove. It is very important that we cancer patients are able to access the latest technologies by means of the NHS and we need committed, passionate women like you to champion our cause.
all the best, Sarahx
Yes agree Sarah - also interesting editorial in The Times yesterday headed “Knowledge and Hope: cancer patients have more chance than ever to discoer the best treatments” focusing on how patients having more knowledge through our own research is important for getting good treatment with help of the clinicians. This forum certainly helps me great deal to manage things and to raise point with Onc. and I certainly appreciate Lemongrove sharing her experiences. My latest issue is trying to tackle a comment from my Onc on the phone that Cyberknife is “experimental” with implication that I should not consider it to much - what isn’t experimental in cancer treatments! Am gathering internet evidence to show it’s quite established now - USA have been using it for 10 years! It would be an interesting meeting later this week…
Fran
Kaz you raise a very good question - and who is suitable and who is getting treatment are not necessarily the same thing. At the moment Cyberknife centres will consider people with a small number of relatively small mets, particularly if they are not suitable for conventional treatment. I have just had treatment to two bone tumours in my shoulder and rib - my onc was able to make a good case for treatment to the approval committee because the shoulder tumour was very close to important nerves, so conventional rads would not have been possible.
Do you know how many lung mets you have? If it’s 5 or less I would definitely ask about Cyberknife. Some oncs are much more receptive to the idea than others, and it’s certainly easier if you are a private patient. Like Fran if you want to pursue this, you will need to go well informed and make your case.
finty x
thanks finty, not sure how many was just told several spots in my lungs, this is just 4 months after i finished chemo and rads ive reques=stedmy scans on cd so just waiting for them now 
kaz xxx
Kaz, even if you’ve had conventional radiotherapy on your lungs, you can still have Cyberknife, because unlike conventional rads, Cyberknife can be used on the same area several times (because it doesn’t damage healthy tissue). There has been quite a lot of research on the use of Cyberknife for lung metastases, and it has been shown to be very effective.
The other form of stereotactic radiotherapy you could investigate is TomoTherapy, as that can treat more tumours, and larger tumours. It’s not quite as accurate as Cyberknife, because it doesn’t track movement, but it’s still accurate - being MRI guided.
THANKS LEMONGROVE THATS VERY ENCOURAGING XXXXX
Hi Kaz
Tomotherapy seems to be available in several northern hospital like Cleveland and Newcastle and Nottingham is just having theirs commissioned - I think you are from “up north” aren’t you???
Good luck
Fran
With this great encouragement I went in strongly with list of issues ad file full of evidence if needed and OH fully briefed and on-side about Cyberknife etc. In the end I still did not see my own consultant (have not seen him since I was diagnosed last April and I was definitely meant to see him as part of going onto a research trial - OH thinks that anything about Cyberknife etc he puts onto other doctors to field…???) Anyay saw another consultant (who I have seen a few times before) and we had a genuine conversation - wonderful! She’s totally onside about looking at both systemic and localised treatments for my liver mets (4 in total and 2 are not holding…) although sounded notes of caution about max does of radiation and sensitivities of livers especially when being treated by chemo. Outcome is very encouraging with her respecting intiatives I want to take and suggesting other herself - so she’s referring me within my hospital to consider liver ablation (I get the feeling theyreally do like to think they’ve got the best treatments for me…), I’m starting on Xelonda now as I can’t be in limbo with no treatment for any longer (Arimidex and Taxotere have not worked for me…) and we are gong for a referral to Mount Vernon for their views and I am following up on the latest research I’ve done on Trilogy (a new stereostatic radiotherapy that in USA and I’ve also found it in a Swiss clinic) that works like Tomotherapy and Cyberknife but is able to use a lower radiation dose so that might suit my number of tumour. Just so encouraged to have the Onc discuss possibilities and a totally genuine way after the patronising approach I’ve had from other doctors. So have a number of ways forward - fingers crossed and thanks to those of you on the forum who have given me such encouragement to research and push with doctors to get some genuine dialogue about our treatments.
Fran (sorry about spelling mistakes - computer is crazy at the moment!)
Hi Fran and all!
Really pleased your team at the hospital are giving you plenty of options and taking your views and wishes seriously. I agree that this forum is invaluable in presenting to us alternatives, different points of view etc, so hopefully we can be better informed instead of being passive “victims” in the hands of experts. I have learnt so much since first coming on here last year.
All the best for your treatments,
Sarahxx
Thanks so much Sarah - the info is so important - plus the emotional support of others on this site who understand how challenging it is to be assertive when you feel so vulnerable. I was quaking before the meeting but luckily had my “acting” background in teaching to carry me through so kept pushing on with my agenda - but it’s not easy- think I’m still full of adrenalin!
Fran
Fran, Im just so pleased that it went so well. What I would suggest now (and again it’s just my view), is that you keep applying pressure. I would wait a couple of weeks and then ask if they had referred me to M Vernon yet. I would then be asking is there any news of the MV referral yet etc. Us British people hate being pushy, but as you have shown, persistence pays off.