Diagnosed primary breast cancer in April 2007. Metastases to both lungs discovered March 2010. Resection to left lung in April 2010. I have had Taxotere and I am now on Zoladex and Arimidex.
I know there are a few different threads on the site regarding Cyberknife but I have a question for those who have queried it with their oncologist and those who have actually had treatment. When I told a friend who lives in America that I had been diagnosed with secondaries to the lungs he was the first person to mention Cyberknife to me. He spoke to someone out in Baltimore and they said if we could send them my scans they could see if I was suitable. I mentioned this to my onc who told me that it would be a waste of time because the cancer would most probably be in other areas of my body and even if I had Cyberknife the cancer would appear elsewhere. Needless to say I didn’t get copies of my scans to send to America. I am now aware of the areas in the UK where Cyberknife is available.
Has anyone else been told it would be a waste of time?
I had Cyberknife for bone mets just a couple weeks ago at the Harley Street Clinic. I met the criteria for treatment because I had just two tumours - I had a previous spinal tumour that was successful treated with high dose conventional rads 10 months ago.
At Harley Street treatment has to be approved by the MDT committee, but I’m afraid I don’t know what their specific guidelines for accepting patients are - I only know that my radiologist thought, after a bit of persuasion from me, that I was a good candidate and she would make a case for me. I think you can contact their information office directly and have a chat with them about it - they are a business after all.
I would encourage you to push for this - it is amazing technology, but would also say that if you have more than a couple mets, and an onc that is not supportive, you have an uphill battle to convince them to go to battle on your behalf. So you will need to do your homework. Having said that, I know they do treat patients with lung mets, so not everybody agrees it is a waste of time.
Also, are you an NHS or private patient? If NHS, you will need to find out if your PCT funds Cyberknife - the ones that do were listed on a recent thread here, but I don’t have that information myself - only that my local PCT doesn’t fund it.
Firstly, let me introduce myself. I have had Cyberknife for skull metastases, and am now campaigning to ensure that PCT’s fund treatment. I’m campaigning because we have a situation where three NHS hospitals in the South East have spent over £ 9 million to purchase Cyberknife (Mount Vernon, Barts, and The Royal Marsden), but not a single cancer patient in Sussex, Surrey or Kent can use it, because the South East Coast Specialised Commissioning Group (who consider funding applications on behalf of PCT’s in Sussex, Surrey and Kent), refuse to fund it.
With regard to your question, your Oncologist seems to be saying that because metastatic cancer is systemic, there is no point using localised treatment because there will be cancer cells elsewhere. While it’s true that the disease has to be fought systemically, most modern Oncologists combine systemic and localised treatments - and your case is a perfect example of why they take this approach. Because in a case where someone has lung mets, the immediate threat is the lung mets rather than cancer cells in the blood, or tumours that might be forming elsewhere. By having Cyberknife, the lung mets could possibly be held at bay, and doctors could save the chemo for another battle.
Anyway, you may like to ask your Oncologist why it is, that three NHS Hospitals have recently bought Cyberknife if there is no point to it. You could also mention the following comment by a leading Harley Street Oncologist, and Cyberknife expert. He said “most advances in cancer treatment are small steps forward, but occasionally there is a giant leap. The CyberKnife® System is a robotic radiosurgery machine that is revolutionising the way cancers are treated”.
Frankly, if it were me, I would be looking for another Oncologist, but it’s not my place to tell you what to do. If your would like a list of PCT’s that fund Cyberknife pm me. In the meantime please sign my petition at the link below. gopetition.com/petition/42313.html
Hi Carolyn
I sympathise, your oncologist seems to have the same view as mine. My mets aren’t in the lungs, I have 2 spots on my liver and quite a few bone mets. My oncologist implied that it was spread around the body anyway so zapping a couple of mets wasn’t worth it! I have gone with the hormones up to now, but as at the last scan my bone mets had stabilized, I might mention cyberknife for the liver mets again, next time I see my oncologist. (it is an issue for me as my hospital Clatterbridge is one with a cyberknife type machine.
I can see that he might be thinking that cyberknife isn’t going to cure me, but if my liver mets were prevented from growing any further, surely this would affect my long term survival positively? Similarly treating your lung mets has to be a good thing.
Nicky that is exactly my view. Also, they need to give you something for your liver, and why not Cyberknife? Also, I would tend to separate the bone mets from the liver as treatment issues - the bone mets can be managed quite successfully by other means, but the liver needs more urgent attention. I know it’s a long shot, but if I were you I would still keep pushing it - although I do appreciate it’s emotionally very hard to do.
Nicky and Caroline
I’ve had the same response from a doctor at my hospital last week (see my thread on Cyperknife or Tomotherapy) - and have now asked to see my consultant. I’d researched that my hospital had a new Tomotherapy unit (like Clatterbridge) and I had thought it might be supportive in my treatment (I have liver mets along with bone mets) but had also researched Cyberknife and knew that had the synchronisity with breathing that could be advantageous. Well, I was told “I’m not going to patronise you…” but I felt it - both treatments were regarded as inappropriate for me, no recognition given to the differences between the two and comment that a private clinic would do the treatment but it was not worth it. So felt very concerned about lack of consideration of these treatments since I’m so aware of comments/experinces of Lemongroves and Flinty and the extensive use of stereostatic radiography in the USA for 10 years and that it is also widely used already in France etc.
So I’m continuing to push on this issue with my hospital as this intial response was like a “closed door” that feels inappropriate.
Tomotherapy is different and since it’s just been installed in my hospital (not yet commissioned and staff not trained yet) I am wondering if it’s a case of not wanting to raise my expectations as they are probably going to use it for cases with more of a curative outcome but that does not feel right to me in terms of “choice” so I’m organising to see my consultant and will request a second opinion of Mount Vernon Hospital that has experience of treating secondary breast cancer patients using Cyberknife and I feel they will therefore have the most recent experience/research on this issue.
Do keep in touch - we clearly have similar issues to face with our medical teams…
Fran
Yes, I had the same response from my Onc. No point in zapping my existing mets as there would be other cancer cells elsewhere just waiting to start up again. But I think the same as all of you and I asked and got a referral to Harley Street last year AND I offered to pay. I was turned down though as they said I had too many mets and they were too small - scattered around my lungs like stars but only a couple of mets in my liver. The chemo had produced significant reduction but the cancer was still there and I wanted it finished off!
Now, however, I have a new met on the surface of my liver and the two in the middle seem to be just scars now so I am going to ask again about having the liver one zapped. I can probably keep on the right side of things with my bone mets, and maybe the lungs, but the liver is of much more concern to me too.
I will keep trying and I will definitely sign the petition. I am determined to keep going until they have a cure for this - it can’t be much longer???
Thanks for sharing your experiece Susie - the clinic’s response clearly shows a professional approach is taken; yet another misrepresentation by my “patronising” doctor who said they’s treat “anything”… We do seem to be on the cusp of a change in cancer treatments with these stereostatic radiography machines and it seems there’s a resistance from our oncs to move on to a wider range of treatment options. I was quoted that it was not “cost effecive” (by this same doctor) so am on the hunt for research that shows it does impact on life expectancy to share with my Onc - I’ve got the Harley St doctor’s research into mets and Cyberknife but am wondering if there’s any from USA or Europe that could help me??
Good luck Susie with trying to get your next treatment since I understand your concern over the liver mets - best wishes
Fran
Hi I just want to list a couple of points, as I thought it might help those struggling with intransigent Oncologists.
While it’s true that metastatic cancer is systemic, and that even with stereotactic radiotherapy, mets can, and undoubtedly will appear elsewhere, treatment must focus on the situation as it is, and not what might be. If a patient has visceral mets, these pose a risk that have to be dealt with pronto. Obviously, we all know that metastatic cancer is systemic, but this does not mean that systemic treatment is the only appropriate treatment. Localised treatments, such as Cyberknife and TomoTherapy Stereotactic Radiotherapy, can be used to destroy secondary tumours, thereby saving chemo for a later date (and by holding chemo in reserve, money is saved in the long term, patients are less likely to become chemo-depleted, and cancer cells less likely to become chemo- resistant).
I can’t tell others what to do, but if it was me, I would ask, to be referred elsewhere to see if stereotactic radiotherapy was an option. For those with health insurance there is the Cyberknife Centre, or The London Clinic. while for NHS patients there is Mount Vernon. For those interested in TomoTherapy (and SusieV I think this might apply to you), there is Addenbrookes. I would strongly recommend that peeps put any request in writing. This puts things on a formal footing, and introduces pester power.
Hope this helps others.
Hi ladies
just a quick query really… Can cybeknife be used on an area previously treated with rads? I had extensive rads to mets on son + chest wall but have since developed more lumps in scarline. I’m currently on carboplatin which is working really well (lymph nodes at superclav all reduced by about 70% after 1st 3 cycles). Organs are clear but I’m triple neg + options are limited so would like to get rid of mets in scarline as those lumps seem to be shrinking more slowly. Clatterbridge hospital is nearby which someone has said has cybeknife + we have private healthcare via my husbands work.
Thanks in advance
tina x
Hi Tina
My understanding is that Cyberknife is just another type of radiotherapy; it got NICE approval on these grounds but it is associated with other more sophisticated equipment to guide the beams so can be stronger in doses. So it probably can be used after other radiotherapy - it can certainly be used more than once itself.
Clatterbridge has Tomotherapy, I think, which is a bit different from Cyberknife ( although they are now one company since the beginning of March…) you can search for both names you will find the company info on them - Cyberknife is linked to breathing movement whereas Tomotherapy isn’t, for instance.
Hope this helps a bit - and good luck with decisions on treatments.
Fran
I was told it can be used after conventional rads, but it wasn’t in the sense of a formal assessment. I had high dose conventional rads on a spinal tumour last year, and knew I couldn’t repeat it, so asked my onc what options I would have if the tumour reappeared - I asked if Cyberknife was an option and she said yes, and on that basis I went ahead with the rads.
The way Cyberknife works is that the rads beams are very narrow and are targeted from many different directions - in the case of my shoulder, from 165 different angles as the robot arm constantly moves around you. The rads beams only intersect at the tumour, so only the tumour and a tiny surrounding margin of about 1mm get the full dose, and the dosage drop off is very steep as you go away from the tumour. This is why it can be used in areas that have already had rads.
The rads are guided to tiny gold seeds that are inserted to create a field around the tumour, and then your movements are constantly monitored by X-ray/scan as you are treated, to ensure only the targeted area is hit. It’s amazing technology.