ITN are running a news item tonight about how the government are still dragging their feet over the cyberknife funding issue, and how this is costing an estimated 3000 lives per year (see link below). The news item interviews a cancer patient trying to get Cyberknife, and discusses the funding issue with a doctor at The Royal Marsden.
The government promised that the the National Radiotherapy Implementation Groupreport would form the basis of NICE approval, but after the report recommended funding within a clinical trial setting, NICE had talks with the Department of Health, and decided to back peddle. NICE now say that the NRIG findings were only ever intended to establish if stereotactic radiotherapy was an appropriate area for NICE to evaluate. They have also said that individual manufacturers will now have to nominate their product to NICE for evaluation (and this will involve literally evaluating every nut annd bolt.
Those of us who are setting up UKCK, are delighted that this issue is gaining more and more attention, because stereotactic technology can prolong life, and treat tumours that were previously inaccesible /untreatable.
If you can, please write to your MP, to ask when the funding issue will be sorted out. You may not need this technology today, but if you have been touched by cancer, you will be aware that things can change rapidly, and you might need it in the future.
itv.com/news/cyberknife-money-risk34029/
Saw the item on the news, I am hoping to be considered for Cyberknife as I have only one small lung met left after chemo,just need to convince my onc !
At least it’s being discussed on national TV , hope it gets more coverage.
Jean.
Tillybob, the problem is that even when Oncologists decide that cyberknife, or other forms of stereotactic radiotherapy are appropriate, they then have problems getting PCT’s to pay for the treatment. As it stands, only 28 PCT’s out of 150 fund it, because NICE are constantly delaying evaluation.
If this is to change, Cancer patients will need to start jumping up and down.
Hi there Lemongrove
I am the beginning of this journey. Had op forlobular cancer, am triple neg. Have had 1st FEC 2 more FEC then 3 T. All followed by radiotherapy.
Listened to the cyberknife issue but felt tired so it possibly didn’t all sink in.
Can you explain to me the difference in radiotherapy and cyberknife and what type of cancer would benefit.
I agree we all need to start “jumping up and down”
Love Val xx
Tillybob I’ve 2 small lung mets I’m hoping to be allowed it also but I’m unsure how long after chemo they allow it or even if I’m allowed to go for it I’ve gtg on the 7 th sept so will mention it then hope we can try pursued them to give us a try gd luck Laura
Lemon grove, I am very happy to write to my MP but not really knowing/understanding the ins and outs yet do you or anyone else have a standard letter I could copy please?
Just caught the end of the news item - hurrah for national recognition of the problem with the MP (I think from Wells) pointing out how limited access is in this country compared to USA and rest of Europe and the dire financial backing for treatment. Am still waiting for reply to my last letter to MP on the subject a couple of weeks ago - maybe she will have seen the news and learnt something from it…
Is it possible to e mail your MP about this issue?
Hello Poodlepatch, sounds like you’ve been through the treatment mill, and hope you are beginning to recover now.
With regard to the difference between Cyberknife and conventional radiotherapy:
First of all conventional radiotherapy: Conventional radiotherapy is generally given from a set position, and involves delivering radiation in two or three wide angled beams. Because conventional radiotherapy is delivered in a wide beam it is not very good for small tumours, due to the risk of overlapping onto healthy tissue, and is usually reserved for large areas (such as MX sites). Consequently if conventional rads are used on small tumours, it is usually only at a low gray (palliative dose). The problem then is, that if tumours are treated at a palliative dose, they can return, and generally speaking conventional radiotherapy is not used on the same area twice (unless the fist session took place many years ago). Treatment usually involves short sessions over a fairly long period.
Cyberknife on the other hand involves hundreds of narrow beams of radiation delivered from numerous directions on a moving robotic arm. As the patient is being treated the machine takes thousands of images, which are fed back to the computer driving the robot, so that the machine can make miniscule adjustments to compensate for any movement. Sometimes a seed is also implanted into the tumour being treated as an additional guide, to ensure even greater precision (particularly with visceral organs).So Cyberknife is incredibly precise. Additionally, each of the individual beams fired is on it’s own too weak to damage heathy tissue, it is only when all the beams collide in the centre of a tumour that their effect is multiplied many times over. Once they leave the tumour the beams continue on their individual paths, so that there is no exit damage.
All in all this means that damage to healthy tissue is virtually non-existant, and this enables Cyberknife to be used at a curative dose. Even if a tumour then grows in the same area, Cyberknife can treat the same area again.
The other plus is that Cyberknife is given over a much shorter period (usually 3 - 5 sessions), although each session is much longer (usually around 2-3 hours).
Cyberknife is not a cure for cancer, but it can destroy tumours, and so delay progression. Yes Cyberknife treatment is more expensive than conventional radiotherapy, but several NHS Hospitals now have it (so costs will steadily reduce), and also it can save money in the long term, by delaying the point when patients become dependent on chemotherapy (which is the really expensive treatment).
Hope this information helps people to understand why this issue is so important.
I just googled my MP and found her e mail address. I have sent her my thoughts on the matter. It’s easy so I would encourage all to do it x
Think we should all email our MP’s over this I saw the issue & thought of you lemongrove, its terrible how far behind we are with this & how even being ill we have to fight like hell its so wrong
Mekala
I emailed my MP and that was fine - she just also needed confirmation of my address to make sure I was in her constituency so make sure you include that in your email.