After studying the discussion forums and the internet etc including feedback to my own discussion topics I have started to research Radiofrequency ablation in more detail.
It appears to me (my personal opinion!) that this treatment does not appear to be readily available to all patients and may only be performed by a few NHS hospitals - is this what others have found?
Therefore please can I ask for a list of hospitals that are known to carry out this procedure when the circumstances are right for it. A named specialist (s) would also be appreciated.
I had RFA back in 2006 at the Chelsea & Westminster in London. I was referred to Dr J McCall by my consultant. Not sure how you would go about referring yourself but feel that I should point out there is a set criteria and this proceedure is not a cure. Although my original tumour was treated successfully 16 months later I have multiple new tumours in my liver. Don’t want to dash your hopes but just felt you should know. This was stated to me at the time and obviously there are microscopic cells that can kick off at any time. I am glad I had RFA and maybe will be able to have it again in the future when I am stable again. I had a single tumour in an accessible location and my disease was stable. I think there is a certain number of tumours that they will treat and also the tumour has to be under a certain size…can’t remember exact details 3-4 cms rings a bell !!!
This is just my experience and as you know everyone reacts differently to things but hope this helps you a bit.
I’m aware this is not a cure, it’s one of a number of possible treatments that may or may not be applicable or appropriate, at this time asking the questions makes me feel a bit better as I feel that I’m doing something for my wife. At this stage I just want as much info as possible to ensure I’ve asked our oncology team as much as possible. Re RFA I do get the impression that it’s not a treatment favoured by our local NHS hospital and I wonder whether that’s by choice or because they don’t have the experience or facilities hence I’d like to discuss with a team that wouldn’t automatically discount it. I think the thing that sounds interesting about RFA is that if applicable you appear to be removing the visible tumour whereas other treatments appear to be more hit and miss and involve a period of time.
I just wanted to add that you are welcome to call our helpline or use the ‘Ask the Nurse’ email service for further information about RFA, the number to call is 0808 800 6000 and it’s open Mon-Fri 9am-5pm and Sat 9am-2pm. The ATN service is accessible via the ‘Support for you’ tab at the top of this page.
Hi Nigel
I have gained the impression (no hard facts) that there is a political (small p) aspect to this debate between the Oncologists who favour the chemical treatment of chemo and the ‘slash and burn’ merchants (as certain Oncologists see them) who attempt to surgically remove tumours. This may account for some of the opposition your perceive - you could just come out with it and ask whether your trust has any prejudice against FRA, you will lose nothing by asking.
I would be interest to hear how you get on.
Blondie
I have just updated my other thread. Following a post radiotherapy meeting today I requested a further meeting with the senior consultant at which I will raise RFA and I will actually raise “Slash and burn” v “chemical/hormonal” treatments and whether oncologists favour the latter and, if they do, why.
Hopefully this will be set up in next couple of weeks (If they do as promised).
I too had RFA last july, I had 1 tumour with easy access and one near my diaphram also noted on my scan where a few cysts. Like jetty I had my surgery at the Chelsea and westminster under the care Dr McCole, I was reffered from the Royal marsden which is the hospital I attened and they work closely together. I have also had an opinion from the royal london hospital through DR Battercharia and was willing to pay for it privately, but in the mean time the RM starting offering it to BC patients and as they worked as a team decided to go with them…3 months later my liver was in remission they only zapped 1 tumour and if this was succesfull then they would go for the more difficult one near my diaphram, a recent scan has shown that the zapped leison is still dead but the few that where noted as cysts have grown to around 1cm, Iknew this was never a cure for me, but was hoping to keep on top of the liver mets by zapping them as and when they appeared, My oncolgyst has decided that he will cive me some chemo and then zap any remaining ones - the criteria for the prcedure is less than 5 solid tumours under 5cm and the location is an importand factor too, something you will have to check with DR.
Please feel free to ask any more questions
best of luck
Amber
We are going to ask our consultant to give permission for a second opinion (failing that our Doctor!).
We want to approach a team that is willing to carry out (if suitable) Liver resection and/or RFA. We have access to private cover if required but to date have been advise to remain with NHS (It does seem strange that the NHS recommends this as surely it would be a good idea to conserve funds in the NHS and have the NHS and private work together!).
Do you know if Dr McCole also does liver resection?
Reading the above and other threads suggests that Liver resections and/or RFA are on offer at the following Hospitals or via the following consultants.
Hospital Consultant/Specialist
Chelsea & Westminster Dr McCole
Guildford ?
? Dr Battercharia
I Have also come across a document that suggests that the John Radcliffe Hospital and Churchill Hospital, both in Oxford, carry out Liver resections and RFA - Has anyone had any experience of these hospitals. I think the consultants/specialists are Mr Soonawalla and Prof Friend.
Please could someone fill in the ? for me + advise of any other hospitals/consultants I should consider approaching for a second opinion.
I’ve also read about Dr Alice Gillams of University College, London - Does she carry out operations?
Any other names/hospitals would be much appreciated
Surgeon in Guildford offering liver resection and RFA is Prof Karanjia. Has several linked websites which you may find of interest - trust I can post the link (www.liver.co.uk) - and he works from the Royal Surrey County Hospital in Guildford. Be warned - there are statistics in the website. I know some people prefer to avoid these.
You can contact DR Battercharia by going through to the main switchboard at the Royal London hospital and ask to be put through to he’s secretary, usually he will call you back himself, he and his team are very very helpful. He is only available for private consaltaions and surgery. When I saw him over 2 years ago he had never performed RFA on a BC patient he mainly delt with Bowl Cancer.
I have only ever spoken to one lady on this forum ages ago who had had a full liver resection as part of a trial 5 years previous - she never had any mets anywhere else when the performed the op and at that time it proved to be sucessfull. I also want to let you know that I put a friend in contact with DR Battercharia who performed a full liver resection on her ( she was tripple neggitive and has ran out of other options) the operation was succesful for around 6 months and then the cancer came back so aggressive that it took het life within weeks - I am honestley telling you this because, as you can imagin I felt terribley guilty for a long time) DR B couldn’t perform the operation at this time as he had broken his arm and his wife had aslo just been diagnosed with BC - the 1st think he done was get her out of the UK to have her treatment somewhere else in europe as he didn’t trust the UK health system!
As for your medical team advising to do everythng NHS I can understand for some reasons why they recomend this…I was going to have my surgery privately with a Dr that is at Harley street and also at the Royal Marsden (MR Gui) he advised if I had all the money in the world ( i have no private health care) he would recommend this to be done at the hospital where they have a specialist team to look after you AFTERWARDS. The theatres are designed especally to meet your needs and most importantly they have an intensive care unit (just incase) Harley street has a surgical theatre that is probaly state of the art and your have a lovely room after but they dont have a specialist team on hand - and if there where complications you would end up in a National health hospital anyway. I decidede to have my lumpectomy still with MR Gui but as a NHS patient at the Royal Marsden - that is how I actually ended up becoming a patient of thiers! also the wait to have surgery was actually longer to have it done privately than it was NHS. I am so very very lucky to be at that hospital, Prof Smith is my onc and I am lucky that I see him at most appointments.
Prof smith has always been very against me having a full liver resection too - he said it is very invasive and actually would have no part in me having it.
DR McCole is a specailist in ONLY RFA he is a radiologyst (not a radiotherapyst) and has nothing to do with surgery - I belive he is only available on the NHS too. you would need a refferal from your hospital.
Sorry a lot to take in - if you think I have missed anything please feel free to ask any more questions!
All the very best Nigel - for you and your wife
His 1st option was back to India - as he is indian there is a huge centre in Bombay, but as that was far from all of thier family, I think he opted for somewhere in either Sweden of Switzerland ???
Also Nigel…a bit more info on Dr Battercharia - he was the 1st surgeon to perform this method (RFA) in the UK
And also One of the Drs at the Marsden from the geneics team (who is Australian) advised me that KYLIE had the same primary treatment like the rest of us, I beleive that having private health care when it comes to BC doesn’t relly benifit you in anyway…it may help get you the chemo drug Avastine but thats the only benifit I have heard, there is also a law that states that if you have private treatment it has to be be all or nothing, meaning you can decide to have one treatment NHS and then another private, I read somthing about this the otherday.
That’s right Amber, a lady campaigning to get Avastin (she posts on this board, I believe - sorry for taking your name in vain!) was told that if she paid for Avastin, she would have to pay for all her treatment privately. It is all about the NHS and a two-tiered system or not.
Just want to add something here- there is no law that says your treatment privately is all or nothing- I have been treated privately and had hormonal treatment from NHS - zoladex etc, what has happened is there is now a nastly little trick to ration very expensive cancer drugs in some part of the countries - eg you can’t offer to pay for something that the NHS offers.
Would agree that private treatment is no better or worse, things can be quicker - if you need a scan you will get an appointment a bit quicker and a result a bit quicker, thats really about it…there are a few other bits and pieces like seeing the same person …
Yes Jenny
I read it in the news paper that once she had the avastine privately she would have to fund the rest of her treatment too…sorry Cathy not quite sure what you mean - maybe its just chemo as hormone treatment can be prescribed by GP ?? when I had surgery for my lumpectomy the wait list was longer than NHS!!!
Private v NHS I wanted Avastin and was prepared topay for it but the NHS Ploicy prevents this. If I payed for the Avastin then I would become a private patient and would have to pay for ALL my treatment, about £15.000-£20.000 per month. NHS does not allow co-payment. The irony is I can pay for a top up ie a scan and still be an NHS patient. Stupir or what!!
mIlls
I had zoladex injections £500 a shot on the NHS when I was a private patient as my insurance didnt cover it…and like mills says there are plenty examples of NHS patients getting scans etc as a top up…so what has happened with Avastin is a just a trick really because the two systems do work together already. In my mind there is no difference between going private for an operation or chosing to have avastin privately…surely there is a court case here as they are inhibiting your ability to make free choices. has anyone ever discussed tthis with a lawyer?