Anyone researched Cyberknife as a treatment with curative intent, but encountered resistance by your local Oncologist or your local PCT? Well I have!
Seems like a post-code lottery to get this treatment - the closer you live to London where the 3 NHS Hospitals have the equipment - Royal Marsden, Mount Vernon and St Barts - the more chance you have of receiving it. At the moment only 28 of 150 PCT’S are funding it. How ridiculous is this and what are we doing about it? Please lobby your MP and support the campaign being mounted by Tessa Munt MP and a few others.
We in Britain are lagging far behind in the use of advanced Radiotherapy
Just to bump this up. I have just been diagnoised with sec lung cancer. No mention of this treatment for me annd I live a resonable distance to make Mount Vernon a viable option. Good luck everyone xxxx
It’s very hard to get the pct to fund this treatment i failed u have to live in the right area and even when u do they still try to get out of it so terrible when it’s out there they shld try it on us ladies Laura
Lexxie303 Even if you are remote from London, if considered suitable by a Cyberknife expert, this treatment only takes 3 -5 45 minute sessions. Please research it as your local Oncologist may not have any experience of the benefits.
One of the bcc members lemongrove is an expert on this treatment and the barriers experienced to getting it - she may be able to advise you. There is an online petition in progress which many of us have signed. The link is on here somewhere as i signed it.
Weebrian1, Good to discover there’s another Cyberknife fan on here.
As far as I know there is only four of us on the forum that have had Cyberknife. My was paid for by a charity (due to the postcode lottery you talk about), another member had private insurance and the other two managed to get their PCT’s to fund it.
Since having Cyberknife in October 2010, I have been campaigning to get all PCT’s to fund it, and have quite a large petition now. I have also been involved in setting up a charity which recently received charitable status from the Charity Commission (we are having our launch in the House of Commons on the 5th May).
Like you say, Tessa Munt MP has been campaigning on the issue, and it would be great if all BCC forum members who are interested, would register their support with her.
I’m in the middle of cooking a roast dinner for a couple of friends, but I will come back to this later tomorrow.
Weebrian1, may I ask what your situation is, and what resistance you have encountered from your Oncologist/PCT ? I might be able to make a few suggestions.
Generally speaking though, it’s important to recognise that Cyberknife does not equal cure for stage 4 Breast cancer. It’s true that it can be used at a curative dose on metastases that are smaller than 3.5 cm, and it can also be used on areas that would be unthinkable with conventional radiotherapy, or even IMRT, but Cyberknife cannot destroy cancer cells floating round in the bloodstream (so recurrence is always possible). The other thing that’s important to recognise is that the term “treatment with curative intent”, does not equal cure in the conventional sense, but is more about long term survival - in any case this approach is only suitable for people with very limited spread (those who come within the category of oligometastatic).
The theory of oligometastatic disease was first proposed by the Anderson Cancer Centre in the US (which is part of the University of Texas), after they reviewed the medical records of thousands of patients treated there over the previous twenty years, and discovered that patients who seemed to survive the longest, were those who had limited spread to start with, and had been treated aggressively (this treatment involved radiotherapy, surgery, and chemotherapy - which was sometimes supported by stem cell transfusion). As such the theory is more readily accepted in the US, and amongst doctors in the UK who have worked in the US.
I agree that it’s sad that this approach is not routinely offered to patients who might benefit, and it is also sad that Cyberknife stereotactic radiotherapy is frequently not offered to patients who might benefit. Cancer patients should be able to rely on doctors to provide the best treatment possible, and shouldn’t have to do their own research and battle to get the treatment they want. But the flip side of having a publicly funded health service which provides care for everyone (rather than just those who can afford it), is that cost is always an issue, and universal healthcare inevitably involves State bureaucracy, which is slow to respond to change.
At the end of the day, things will only change if we all jump up and down (preferably together), and demand it.
Lemongrove My situation is that I have secondary oligometastic in two sites. After Chemo one of the sites disappeared, however on a recent PET scan is again showing up as a"hot spot". I have attended privately at the London Clinic and had Cyberknife to the site in my abdomen as my local Trust in Belfast refused funding stating it “was not the treatment plan as recommended by the MDT”, which was “Chemotherapy for palliative care only” and “there was no clinical based evidence for Stereotactic Body Therapy”.
My solicitors attempted to seek a Judicial Review of this decision in Belfast High Court last Monday 5th March 2012, but were not granred Leave to Appeal on the grounds that the Judge could not interfere with the medical advice with “the team of experts”.
I now need and have been recommended Cyberknife to the other site by the Cyberknife experts, but do not have the ability to fund privately. My only chance of life seems to be ebbing away with this decision.
Lemongrove. The resistance that I encountered from my local Oncologist, whom I later discover is a Medical Oncologist was that when I consulted privately with Dr Gaya in London he virtually ignored all the correspondence and recommendations sent to him by Dr Gaya. When Dr Gaya recommended that I have a PET scan after 3 and 6 sessions of Chemo, he ignored that and left me in a position that I had to have this done privately, albeit that I provided him with the Reports and the discs of the PET scans.
After having Cyberknife end of Nov 2011 I asked to have my Oncological management in Belfast taken over by a Clinical Oncologist, who has taken a different attitude in as far as she commissioned the PET scan in Belfast, as requested by Dr Gaya 12 weeks post treatment. Despite all of the above, the fact that 28 PCT’s are funding Cyberknife for patients considered suitable, provided they are included in Clinical trials, as per the advice of the NRIG Report, makes me wonder about my Human Rights under Article 2 of ECHR.
I meet with my new local Oncologist next week to discuss the PET scan and next steps. However I am not hopeful that she will now do an about turn, as she of course was probably a member of the original MDT of “experts”.
OK Weebrian1, this is what I would suggest:
(1) It is good you have changed your Oncologist, because the last was being obstructive, and the Courts rarley go against the opinion of a medical expert, as you discovered when you sought Judicial Review.Ultimately though, would it be possible to transfer to one of the London Hospitals (Charing Cross, The Royal Marsden, Mount Vernon, or Barts), as these would probably be more in tune with your wishes. I’m aware you are in Northern Ireland, and this may not be possible/practical, but could you acquire and address in London?
(2) If your new Oncologist and Dr Gaya believe that Cyberknife is appropriate, then they should make a fresh application for funding to your PCT. While your PCT can say they do not usually fund stereotactic radiotherapy (for whatever reason), my understanding is that they cannot lawfully apply a blanket ban, and are required to consider applications on a case by case basis. Having said that, you would be very wise to ask for the assistance of the Pamela Northcott Foundation (see link below). The Pamela Northccott Foundation is a charity that have helped numerous cancer patients to challenge PCT’s when they have been refused funding for various drugs and treatment. There is no charge for what they do, and the QC who works with them does so on a pro-bono basis.
pamelanorthcottfund.org.uk/
(3) If your PCT refuse funding after a fresh application, you could approach the Victoria Foundation (see link below). The Victoria Foundation are a charity that sometimes help fund treatments when there is no other alternative. They would require evidence that the treatment is medically necessary; that you have made attempts to get funding; and been refused, and that you do not have the means to pay for it yourself.
(4) The recommendations of the NRIG report are not binding on either the Government or PCT’s (so I’m not sure about the Human Rights angle, but you would need to consult a lawyer about that). However, the Government have responded by saying that NICE can now assess
Cyberknife (they were prevented from doing so previously), and have agreed to set a national tariff for stereotacctic radiotherapy by 2014, which should ease the funding situation.
Hope this information helps you, and let me know how it goes.
Lemongrove. Thank you for suggestion of the Pamela Northcott Foundation, whom I have now contacted. I see they have a lesding barrister, Peter Telford QC who will assist. Very helpful.
I already got a contribution from the Victoria Foundation for my first Cyberknife and am embarrassed to go back again.
Brian
I follow this thread with interest, I have a lesion on T9 where my onc thinks it’s probably not a met, but not 100% sure. It’s only 5mm but if it is a met she called it an isolated met, as it is the only one acc to CT and bone scan. Would that not be a case for cyberknife for example?
I wish you lots and lots of success Brian.
Christine
Weebrian1, Kate Spall is the person you need to speak to at the Pamela Northcott Foundation (she founded the charity), and if she thinks it is appropriate she will involve Peter Telford QC.
If you have already been funded by thye Victoria Foundation, I don’t know if they would agree to do so again - but there is no harm in enquiring. It’s a shame that you can’t find accomodation in London (if only temporarily), because you could then get a referral to the Royal Marsden, where they have cyberknife and a charity that sometimes funds those who cannot get funding from their own PCT.
3network3, the only way to find out if Cyberknife would be suitable for you, would be to speak to a radio-oncologist, who specialises in stereotactic radiotherapy. The average Oncologist is more familiar with pharmaceuticals, so you would probably need to speak to someone at either the Royal Marsden, Mount Vernon, Barts - or in the private sector at The London Clinic or Harley street Cyberknife Centre. Cyberknife might be suitable, but then so could conventional rads, or IMRT, providing they are able to deliver it at a curative dose.
Hi all,
Just a quick reminder that the naming of professionals is against BCC’s Community Guidelines, and would ask that you all bear this in mind when posting. We are aware that a professional has been named earlier in this thread but unfortunately it was not picked up, so on this occasion we are leaving it.
Many thanks for your co-operation on this.
Kind regards,
Jo, Facilitator
Sorry BCC, oversight on my part.