Hi everyone,
Some of you already know that 9 weeks ago I asked my onc for referral for RFA for my remaining liver met. He said he would do this. Today he told me that he has drawn a blank (I don’t think he has investigated much as the only evidence I could find on my file was an e-mail that he sent in April).
He asked if I knew of anyone else having this treatment for liver mets, I told him that I had heard of people having this treatment. He asked if I could obtain the details of the hospitals and Drs who were undertaking these assessments.
We are not allowed to mention Drs names on here. Would folks please PM with details.
Links to research re liver mets and RFA would also be greatly appreciated.
My PCT is one that has funded cyberknife.
To be quite honest I am feeling a bit fed up with the way this has been handled. I now feel that obstacles are being put in my way. When I told my OH what had been said he used used a very bad word.
Thanks everyone.
Alex D
Hi Alex
I feel like adding to what your husband said, with an equally bad word! Sorry I can’t help with the RFA referral experience. I was waiting to hear how you get on! I mentioned it last year when I was first diagnosed with liver mets and was told that as the cancer wasn’t stable elsewhere, it wouldn’t be appropriate. I was hoping that when (please!!!) my next CT Scan showed stability, I could use experiences of others to push it. Your oncologist sounded as if he was going to go with it, so I can understand how frustrated yo must feel. I can’t remember names of anybody on here who has actually had liver met removal by whatever means on the NHS, however there are many people on the US site who have, but I guess this is irrelevant to oncs over here.
Hopefully somebody will come forward with a name/hospital. I too would be very interested. Good Luck and let’s hope we can generate a list of hospitals/onc willing to remove liver mets, as we all know that doctors often follow where others have been successful, but don’t like to stick their neck out themselves!
Hope you get the information you need and the resultant action!
Nicola x
I feel so sorry for you having to do this research yourself - having BC is bad enough without this extra pressure. I always used to assume that the medical practitioners would know best but this is obviously not always true.
I do know that there are some very knowledgable ladies on this site (unfortunately I am not one of them) so hopefuly they will be along soon to help you.
Good luck and best wishes, Lynn x
Hi, I haven’t had this treatment but I think somebody mentioned having had it in the ‘what treatment is available where’ thread which is further down in this section.
Best wishes
Tournesol
Hi Alex,
Here’s the link to the forum ‘what treatment is available and where’
breastcancercare.org.uk/forum/stage-4-what-treatment-is-available,-and-where–t30858.html
Jo, Facilitator
Alex, University College Hospital is the leading Hospital for RFA (RFA uses heat to destroy a tumour). You could also ask to be referred for Cyberknife sterotactic radiotherapy at Mount Vernon Hospital or TomoTherapy at Addenbrooks (Stereotactic radiotherapy is very precise radiotherapy that can be used at a curative dose).
NICE say that RFA is not as successful as surgery,so you may like to consider Cyberknife (because that has been shown to produce equal results to surgery).
PS the link given by jo doesn’t seem to work. Is it just me?
Hi Lemongrove - link from Jo does seem to work for me so not sure what is happening…
Fran
Thanks Francis, have just tried link again and it worked. Silly me, computing is not my strength. Funnily enough the link is to a thread I started, so maybe my brain is packing up. Anyway someone called Candide posted about her experience of RFA at University College Hospital, so maybe if you pm her Alex, she can give you more info?.
Hi everyone,
Thank you very much for your kind and helpful responses. I have the information that I need and will contact the Dr myself. The people on this site are just wonderful, I could not have resolved this situation without your encouragement and support.
I will let you know what happens next.
Thanks again.
Alex
Hi
I had RFA at London Bridge by a Consultant who practices at Kings College Hospital and is very experienced. Guys and St Thomas also offer RFA liver. I had RFA to one larger lesion and two dots. For me has unfortunately returned but was told in up to 65 % if single metastatic site does not and can retreat anyway
Hope helpful
Hope 15
joanna
Hi
I had RFA last year to my liver and lungs.
Lungs sucessful, but liver lesions returned after 7 months as letrozole hormone drug failed.
Great treatment tho, and didnt hurt that much! 
I had it at UCH in london after researchin it myself and makin my oncologist write to them for a referral!
Good luck with getting the treatment - anythin is worth a go to extend our lives for as long as poss
Zippy, hope you don’t mind me making a suggestion, but have you looked into Cyberknife or TomoTherapy for your liver lesions? Research suggests stereotactic radiotherapy is very successful in treating visceral metastases.
Hi I’ve been doing research on liver met treatments as I have 4 (2 stable for a while 2 still progressing…) and and although hoping current chemo works am preparing for needed more treatment. I contacted by email a private clinic in London about Cyberknife treatments in case access to NHS is denied (my PCT had not funded any yet…) and they advised that 3 tumours was the max number they would treat (presumably because of amount of radiation) and they needed to be 3cm or less.
My Onc said she was prepared to refer me for RFA at the QMC, Nottingham but thought the surgeon had only done this on patients with colon cancer in the past so am not sure about reputation/experience there for breast cancer which makes me wonder if the Onc would have agreed to push for this if needed.
Hope this info helps - and good luck with pushing for treatments. I get CT scan results on Wednesday and am wondering what I’ll need to plan for as I’ve been told they are “mixed”; but much less discomfort around the liver so am hoping those mets are getting smaller and that maybe it’s my bones that need attention now… So am finding this thread useful…
Frances, if you have more than 3 tumours you could investigate TomoTherapy. TomoTherapy can be used stereotactically, and although it does not track a tumour like Cyberknife, it is MRI guided, so very precise, and can be used at a very high (curative) dose.