Like some of you I’ve been excited by the possibility that Cyberknife or Tomotherapy could be useful in helping to manage my liver mets and I’ve done alot of research on the web into both. I also got very excited when I found out a few weeks ago that my local hospital has just had a Tomotherapy unit installed in its new Radiotherapy Unit (still not commissioned or staff trained though…) Was shot down yesterday by a young doctor when I raised this issue of these treatments as part of my decision about whether to go onto a research trial for new chemo as the Taxotere is not working - he’s said they’d not use Tomotherapy for liver mets as it’s not cost effective (can’t put enough !!! to convey my response) and he also thinks Cyberknife is not effective either although private clinics would take my money if I went to them.
So now looking for more info and trusting you wonderful ladies might be able to help - think I need a second opinion on these issues by an Onc at a NHS hospital with Cyberknife so do any of you know an Onc I could ask to be referred to - could you PM me, please. Thanks to anyone who can share info either by the forum or PM on these technologies and responses you’ve had etc - think we need lots of mutual support if we want to get access having had my ideas completely “shot down” by someone who said he didn’t want to patrionise me (I felt very patronised).
Fran
Hi Fran
Sorry don’t know of an onc. I just wanted to say that I am in a similar position to you. I asked if I could have surgery or cyberknife when first diagnosed with liver mets, I was told that it would be pointless because the cancer is in a few places and isn’t stable.(not his actual words but what he implied) my last scan showed all the bone mets appear to be stabilising but liver ones still not, so I too wish they could just zap them. It must be possible, it must be cost! Where are you being treated? I’m Clatterbridge.
Nicola Xx
I have sent you a pm.
Thanks Nicky and Lemongrove - its good to link with you as doctor was so adamant these were not appropriate for liver mets - or “cost effective” as he also said - so I think that’s the the real issue since Nottingham has only just got its Tomotherapy and it’s not even up and running yet so they’ll want to go with using in on less problematical cases than ones like mine with 4 liver lesions to try to guarantee success… I know my mets are not stable (2 are stable since Dec but other two are not…) - but feel that zapping them will give chemo more of a chance to work on others as they develop so I know it’s not a cure and I guess that’s why they are not to interested… but he also thought paying for it privately was not a good use of money - but I feel it could help especially if chemo is not working too well (just had to stop Tax as it was not working and will now try Xeloda). Feel under time pressure as I know it’s best to zap lesions whilst they are small(over 3cm is not so effective…) and mine are growing… some interesting success stories too from the USA about liver mets on the web that I just can’t ignore… It must be very frustrating for you Nicky when you also know Clatterbridge has the facilities… I’m going to ask for a second opinion from another hospital. Do let me know how you get on.
Fran
xxx
Hi Fran
I’m in the middle of Cyberknife treatment at the Harley street Clinic. If you are considering paying for treatment, you can contact them directly and discuss it with them - you don’t need a referral to talk to them. But even if you are paying, it still has to be approved by their MDT. I don’t know what their criteria are for liver mets, but I think you are right about tumours needing to be under 3cm.
Good luck,
finty xx
Fran, three things:
(1) I don’t know if I’'ve done this already, but I’m going to send you a list of the PCT’s that have funded Cyberknife. If your PCT is amongst them, you will at least have precedence on your side.
(2) The other thing to consider in deliberations with your medical team, is that while Cyberknife is expensive in the private sector (£22,000 on average), the cost is nowhere near that in NHS hospitals. I know for a fact (as I made an application for info under the Freedom of Information Act) , that the amount Mount Vernon charge PCT’s for a course of Cyberknife treatment is approximately £7,500. So you could mention that when they say the treatment is not cost effective.
(3) As I mentioned in my pm, I would ask them, in writing, to refer you to Mount Vernon, for an assessment as to whether Cyberknife would be suitable for you. I think it’s important to put it in writing, for the reasons I mentioned in my pm. Also, don’t forget, that you can always ask your GP to refer you to Mount Vernon. You are fully entitled to seek a second opinion.
Good luck, and keep us informed.
Flinty and Lemongrove
Thanks so much for sharing your knowledge and experience - it’s so useful to be armed with facts that I can put to medics who are still working out how effective these technologies can be and who are so wrapped up in cost effectiveness issues. Flinty it’s good to know you’ve accessed the Harley St Clinic facility and info about MV is very useful too Lemongrove. I plan to talk this over with my consultant asap (it was a doctor who was so negative) and then progress things from there based on his response - will let you know how things go.
Your support is really helpful and encouraging - otherwise I’d feel very “out on a limb” with this! The doctor said he did not want to patronise me over this issue and my ideas - just saying that made me feel patrionised and galvinised to explore things further!
best wishes
Fran
Could anybody give me some information about Cyberknife and Lung mets?
My onc said its expensive and not appropriate for me, she said my mets are tiny and there are several (on scan we saw about 8 ),We would be willing to pay whatever it costs if it works !Reading some of others posts on this subject it seems many Onc’s dismiss this treatment but I am not willing to give up just on her say so.Any advice would be welcome.
Jean
Hi Jean
Cyberknife has certainly been used successfully for lung mets - the problem is getting around what seems to be a consensus that it is only approved for three or less mets. I don’t know whether this is clinically based or cost based, probably a bit of both. It is indeed expensive, to have the treatment privately I was quoted £22k per met.
If your onc is not supportive, what alternatives have you been offered? I’m wondering if a course of chemo could reduce the number of mets to a number that would be suitable for Cyberknife?
finty xx
Hi Finty,
wow that’s a lot of money !!I am having aggressive tax chemo and herceptin next week , perhaps your right I can see how that works and see if the number of mets can be reduced and take it from there, but thanks for your input I really appreciate it,
Where I would be with out people like you I dare n’t think !
Jean x
I’ve only just been diagnosed with lung mets, 2/3 spots up to 12mm in size. I asked my Onc about cyberknife but he said no, I need systemic treatment and I’ve just started Xeloda. I’m hoping this works, but I’m really interested in the potential of cyberknife and whether or not it might be an option for me.
My Onc has now left and I’ve not yet been allocated a new one. Do you think it might be worth speaking to my GP now about a possible referral to see if I’m a suitable case? How do I find out if my PCT have funded this in the past, I’m in the North East but I’d happily travel to Timbuktoo if need be.
I wonder if there’s any reason why I can’t do the 2 things in tandem? Right now, I’m as fit as a fiddle, no symptoms, the spots were just noticed on a routine CT scan.
Sorry for all the questions… My brain is still whirring from the diagnosis and I find I’m struggling to get across what I mean.
Wendy
x
Hi Wendy
I know it’s different, but I had tomo therapy at the Freeman they have one of the five machines in the country. I don’t know whether it’s as useful as cyberknife. But it’s right on your doorstep. I had it for primary bc on the nhs. You know where I am if you have any questions.
Debxx
Deb, I did think of you your treatment as I’ve been reading about this. I’ll to do a some more research on the Tomotherapy and lung mets I think. Thank you.
Wendy
x
Wendy - as far as I am aware there is no restriction on contacting the Cyberknife unit at the Harley Street Clinic and just discussing general principles of using Cyberknife with them.
Jean - you’re very welcome. I hope the Tax and Herceptin does the job for you.
finty xx
If it’s just liver metastases, then ask your doctor about SIRT or Selective Internal Radiation Therapy. It delivers radiation through tiny beads into the artery of your liver and delivers a high dose to tumor and a smaller dose to normal liver.
As you know I starting this thread and am delighted with the info I’m gathering and that seems useful to others - so many thanks to you all. Just some info I’ve found out in my searches - on 7 March the Cyberknife company (Accuray) acquired Tomotherapy so my thinking is that this might reduce competitiveness and make the machines more expensive (not good when NHS is just starting to purchase both) but in the long term might bring about even better treatments with their merged research expertise. Since Cyberknife has been used in the USA since 2001 there’s a lot of evidence on the web about it and personal testimony from patients about its use for different types of metastices.
At the moment I’m waiting to start a drugs trial using a combination of two chemos - hoping these help the tumours hold as Taxotere didn’t - but am pursuing the Cyberknife idea and going to GP for referral for second opinion tomorrow well armed with evidence and confidence from this site. So am hopeful on two fronts Jean and hope your treatments help too.
best wishes
Fran
Good luck with your GP tomorrow Fran - I have found going armed with evidence has paid off big time. I only have my own experience to go on, but I get the impression my oncs fight just a little bit harder (in my case with the insurance company) for patients that are well informed and take a proactive approach.
finty xx
Good luck for tomorrow Fran, let us know how you get on. I’ll be cheering you on!
Wendy
x
Just want to reply to tillybob and wubbly.
Tillybob, the figure quoted by finty is what you would pay in the private sector. However, Cyberknife is now available in the NHS, and you could ask for a referral to Mount Vernon NHS Hospital. The Royal Marsden, Barts, St. James and Derrsiford Hospital have also purchased Cyberknife, and will hopefully start accepting patients by the end of the year . The problem is though, that even if Mount Vernon accept you for treatment, your PCT will have to agree to fund treatment - and currently only 28 PCT’s fund cyberknife (which is why I am campaigning on this issue - see link to petition below).
gopetition.com/petition/42313.html
Also tillybob ,with regard to charges in the private sector, my understanding is that you would only pay £22,000 per metastases if the mets were widely dispersed (because this would involve additional treatment). If all the mets are in the same area (e.g, three in the liver), my understanding is that you would only pay £22,000 (but obviously, please check this). I think the main issue for you is the number of mets, and for this reason I would suggest that maybe you could investigate a different form of stereotactic radiotherapy called TomoTherapy (which Midge referred to above), because it can treat more mets at a time than Cyberknife (and also larger mets). Although TomoTherapy doesn’t track tumours like Cyberknife, and therefore isn’t quite as accurate, it’s still MRI guided, super accurate, and can be delivered at a curative dose. In fact Accuray (who make Cyberknife), have just bought TomoTherapy in March 2011, and this has sent Accuray’s share prices rocketing (because they now corner the market in stereotactic radiotherapy).
Wubbly, like you, I don’t understand either why your Oncologist has said that Cyberknife would not be suitable, and wants to restrict your treatment to chemotherapy. My Oncologist takes the view that metastatic cancer needs to be treated on two fronts (systemically, with chemo etc, and locally with various types of radiotherapy etc, to stop the progression of metastases). Also one of the leading experts in Cyberknife at Harley Street, wrote a press article in which he said Cyberknife is most effective when given in conjunction with Chemotherapy. So maybe it’s time to get a second opinion?
Anyway, with regard to the PCT’s that have funded cyberknife, If you pm me, I will send you a list.
But even if your PCT is not on the list, it doesn’t mean they wont fund it, it could be they just haven’t been asked yet - so don’t give up.
Please sign the petition ladies/gents at link below:
gopetition.com/petition/42313.html
The information on the petition page says “Twenty eight PCT’s around the Country do fund Cyberknife, but not one of these is in Surrey”… but the Sutton Royal Marsden Hospital is in Surrey. Lemongrove, please can you clarify?