Hi Tonim ...... I have read your story on another thread and understand the turmoil you are now in and how 'mind blowing' it is. I cant add anything to what others have said regarding that but can let you know about some of the treatments I have had. I have secondary tumours in my liver and brain. In 2014 I had Nanoknife treatment to the liver - I am not sure if that is the same as RFA - it uses electrical impulses between several probes and doesnt damage 'structures'. My tumours are on main veins and deemed as inoperable because some procedures damage the veins as welll as the tumours - Nanoknife doesnt. It requires a general anasthetic but the recovery time was very quick and the procedure worked well. I now have a further two tumours growing and if all goes well with my CT scan next week, I will probably have further Nanoknife treatment.
This year I had Cyberknife treatment to my brain - it is a targeted radiotherapy which destroys the tumour but nothing around it.
I dont believe that these are available on the NHS but I am not sure of that. Luckily I have insurance at this moment in time.
If after your research you want to know more about either of these procedures, ie who to talk to and how to find out if they are suitable for your diagnosis - please let me know and I can get the info to you by email (if you want to talk one-to-one) or here on the forum. However I think the forum rules state that you cant give precise details of doctors/hospitals etc and they have stopped their private messaging system so we may have to go 'round the houses' a bit to get in contact.
Stay positive honey - according to 'averages' I should have been gone years ago but here I am still and just saw my lovely daughter married yesterday! Max x
I see you have already received a very warm welcome on our forum and I hope others who have had RFA ablation will comment here soon and share their experience of it with you.
In the meantime, we have a useful information page on Radiofrequency ablation and if you ever wanted to ask our nurses any question on cancer, you can reach them on 0808 800 4040 (it's a free number), Monday to Friday 9am to 5pm. Don't hesitate, they're very friendly.
You have come to the right place for support and friendship.
The last time I checked, Nanoknife (irreversible electroporation) still hadn't been NICE approved for general use*, so wasn't generally available on the NHS but Cyberknife (Stereo tactic radio surgery) is approved and is definitely available on the NHS - subject to clinical appropriateness etc. My wife received Cyberknife treatment at the Clatterbridge for a non-cancer condition treated by the Walton Centre in Liverpool which shares resources with Clatterbridge.
Thanks for that Dave. NICE have now approved RFA for cancer and it is available at several hospitals around the country. I wanted to hear if anybody had actually had it. But thanks.
Thanks for that Max56. I am seeing a consultant private tomorrow just to answer various questions and various routes to take, as I've lost faith in the oncologist I saw last week and I am thinking about asking to be referred elsewhere. Thank you and good luck with you and congratulations on your daughters wedding. I hope you all had a fantandtic day.
Thanks Tonim. You are entitled to ask for a 2nd NHS opinion and your GP will be happy to refer you for one. There are several treatment options available that sadly we are not made aware of and a private consultant will definitely be the best person to ask about these because they are not thinking of budget/cost issues. I have found that most oncologists and radiographers within the NHS are unaware of new treatments - I guess because they only practice NICE approved procedures. One such radiographer was amazed that I was able to have a safe treatment on my liver (nanoknife) as he had never heard of it. I had literally jumped off his operating table a few months before because he told me I only had a 50/50% chance of surviving the microwave ablation he was about to perform on me.
Never be worried to push yourself forward and ask lots of questions with the docs - I was, but I certainly am not anymore - its our lives that we are fighting for now and I am sure they would be the same if they were in our position. Best of luck with everything - keep in touch x
