Had Cyberknife in October 2010, for three skull mets. Went for NM bone scan today, and the radiologist said he couldn’t see anything on the scan at all. I’m in shock. The Cyberknife Doctor said that there would always be evidence of where the mets had been, so I can’t believe they would have disappeared completely. I’m now worried, that they might be holding something back. I’m seeing my Oncologist in April, but it just seems to good to be true.
This is amazing news - you seem so set of hearing bad news that to hear such good news does not seem real to you! I think I can understand your tentativeness. Hope the news sinks in - and this is wonderful news about the effectiveness of the Cyberknife treatment that you’ve so kindly shared with all of us on forums.
best wishes
Fran
brilliant news for you good luck with your Onc appt in April I am sure he will confirm and then you can really celebrate x
Hi Lemongrove have been following your Cyber knife thread( I had rads at Mt V)well no wonder you are in disbelief/shock. It is wonderful that the Cyberknife did the job but can really understand your relicance to believe. Hope all is well really well for you.Jackie xx
I am so excited for you, Lemongrove, how fabulous, will this make them change their minds about the effectiveness of this treatment? I’m hoping so
Lavender
xx
Fantastic news Lemongrove - going for a scan and getting good news for once! I’ve just had two of my Cyberknife treatments - last one on Monday. It’s such amazing technology, I hope it’s soon available to everybody.
Lavender Lassie - I don’t think there’s any doubt about the clinical effectiveness of Cyberknife, it’s more a funding issue and getting oncs to change their approach to treating patients with early mets - understanding that treating aggressively has the potential to achieve long term survival. When I was first dx’d in 2009 I had to convince my radiologist that it was worth treating bone mets with a curative dose - she was quite reluctant. But I insisted and had high dose conventional rads to the spine. I’ve now had cyberknife to two mets that were missed at dx - again curative doses. When I saw the same rads onc last week, she was very excited about the change in philosophy - I’m not sure if she has other patients that she is treating this way, or whether it’s just me - but the important thing is she is now open to this new approach, and implied it was gaining acceptance in the wider bc community.
Lemongrove has done fantastic work with her Cyberknife campaign - and I know there are quite a few people here that are now aware of it that weren’t before.
fintyxx
With regard to what Finty mentioned above, I totally agree - it’s the funding issue. I’m a member of my local NHS Cancer Network Partnership group (who help shape cancer services in this area), and they carried out a survey of Oncologists. The survey showed that three out of four Oncologists in this area would not refer a patient for treatment (even if they knew it would be beneficial for a patient), if they believed the treatment would not be funded (for fear of raising false expectations, and upsetting the patient).
This is why it’s so important for us all to challenge this funding issue.
I agree Lemongrove - I’ve been told by doctor that it’s not cost-effective; but how can they know this when it’s not been used before? My parallel is that I had a shoulder replacement due to bone mets in upper arm and I feel sure that removing that tumour has allowed the body to cope better with treatments for bones mets as a result - my thinking is that removing other tumours will help other treatments such as chemo work more effectively. I’m no scientist but this line of thinking seems worth exploring when faced with negative comments about the value of Cyberknife for many in the secondary bc medical world especially when they will be having to compete for access to the facilities along with all other oncologists. Really glad you are working on challenging ideas
Fran
hello Lemongrove
really pleased with your good news.Seems as though good news throws us and we don’t know how to take it!
Lucinda x
Finty, I believe it is effective but thought that the committee that decide what treatments to use in the south east of England had cast doubt on its effectiveness, not just cost effectiveness.
Thrilled that Lemongrove not only got the treatment but has had such a good response, that cannot but give pause for thought re their decision making.
Hi Lavender Lassie,
I am involved in a campaign to challenge the ban that has been imposed by the South East Coast Specialised Commissioning Group on funding Cyberknife treatment here in the South East of England. Consequently, I thought it might just help if I were to clarify the issue you refer to, as I am a little concerned that some people might draw the wrong conclusion, and think that Cyberknife has been proven clinically ineffective.
You are right to say that the South East Coast Specialised Commissioning Group have refused to fund Cyberknife treatment, by casting doubt on it’s clinical effectiveness. What they actually say is that there is no evidence that Cyberknife is any more effective than conventional radiotherapy, but costs more. However, there are a couple of important points that need to be remembered about this (and I suspect you know these).
Firstly, I know (because I made an enquiry under the Freedom of Information Act), that the SECSCG have never conducted their own review about the clinical effectiveness of Cyberknife. In fact their decision to refuse to fund treatment is based on an outdated Canadian Public Health Review from 2003 - the report is outdated because Canada officially approved Cyberknife in 2006.
Secondly, while it’s true that Cyberknife costs more than conventional radiotherapy, the SECSCG have no evidence whatsoever to say that Cyberknife is no more clinically effective than conventional radiotherapy - because the Canadian Public Health report did not compare Cyberknife to conventional radiotherapy. What it considered was whether Cyberknife had any clinical advantage over another form of stereotactic radiotherapy called Gamma-knife, that would justify the additional cost. While the report concluded that Cyberknife did not have enough benefit to justify the additional cost, it has to be remembered that Gamma-knife is only used for inter-cranial tumours. So for someone with, for example, a visceral tumour the comparison would be irrelevant, as Gamma-knife would not be unsuitable anyway.
The final point is that comparing Cyberknife with conventional radiotherapy is pointless anyway, because patients are only referred for Cyberknife when conventional radiotherapy is not an option/suitable.
Hope this clarifies the issue.
Just bumping
Thank you for posting that excellent summary of the situation, Lemongrove.
My apologies for having referred to it so simplistically, I did not mean to mislead.
Bumping up for Olives.