Hi everyone,
I was dx with liver mets a few weeks ago, now on FEC chemo. I was told I might qualify fore RFA sometime in the future if the liver responds.
Never had an op in my life before, so a bit scared of the thought of going into theatre etc… But, at the same time, I’m quite excited about the prospect of the possibility of being NED in liver.
Only just started FEC, so the RFA in still quite far ahead. But would like to gather as much info as possible from you ladies who have gone through this and my medical team. Just list a few questions for now, but may add a few more later:
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Do you have to wait after chemo for RFA to start? If so, how long? I’ve read somewhere MRI scan on liver is need before RFA to confirm size, location etc. Is this correct?
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How long does the op last? I suppose it depends on the size and how many. I’ve read the possibility of keyhole surgery, I suppose this is a factor as well.
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How long does it take to recover?
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I’ve read the chance of re-occurrence (think this means liver mets re-occurrence) is quite small if successful. Was your successful/effective?
If you know anything important I need to know that I’ve not mentioned, please feel free to tell me.
Thanks ladies & have a lovely bank holiday weekend
xx
Hi m1yu - I don’t know anything about the procedure but just Googled it and came up with an article on a US site which might help with some of your questions:-
radiologyinfo.org/en/info.cfm?pg=rfa
Ann x
Hi M1yu
I’m sorry that I don’t know anything about RFA, so can’t help you there, on the general operation front though - I’ve had a few! It does sound an exciting posibility that this operation can produce NED. So here’s hoping that you qualify for it!
The NHS have quite a lot of stick from various sources, yet they have my heartfelt appreciation and admiration for everytime I have had an operation. It is understandable that you should feel apprehensive, you will have somebody with you as you go to theatre and if you request it will be given a pre-med to relax you. Recovery time from key-hole surgery is so quick and in some cases relatively painless.
I send you my very best wishes Good Luck with the FEC and I really hope that this procedure or any other options have the desired effect of keeping this cruel disesase at bay for as long as possible,
Take care Nicky xx
Hi m1yu, I know 3 ladies that had RFA. I (think) it can depend on the numbers of mets in your liver but I may be getting mixed up with a liver resection, have you also looked at the possibility of a resection? a small link here,
(‘‘What is liver resection and why is it done?
Liver resection is the surgical removal of a portion of the liver. This operation is usually done to remove various types of liver tumors that are located in the resected portion of the liver. The goal of liver resection is to completely remove the tumor and the appropriate surrounding liver tissue without leaving any tumor behind.’’ )
A friend had a resection and the liver grows back to it’s normal size very quickly. My RFA friends did have recurrences but after a long, long period of NED and please don’t be put off by this as the bigger picture may be far more accurate and if I’m ever diagnosed with liver mets in the future I will most definitely go for RFA or re-section if I’m able to. Good Luck and Lots of Love, Belinda…xx
Hi m1yu
I’ve not had RFA although I was considered for it. Jacksy (who posts on the liver secs thread) has had RFA though and I’m sure would be happy to answer your queries about length of op etc. May be best to pm her as she has obviously missed this thread.
I wasn’t considered suitable because one of my tumours is too close to the portal vein so it wouldn’t have been safe. They seem to be doing it more and more these days and are more willing to tackle several tumours and even repeat the RFA if need be.
I also had an attempted liver resection. Unfortunately once they opened me up they discovered clusters of tiny tumours which were too small to show up on the MRI scan (if I remember rightly the surgeon told me there was about a 12% chance of that happening). So all they could do was sew me back up again - though they did take my gall bladder out as had a gall stone! Despite it clearly being quite a traumatic episode for me, I have no regrets about giving it a go as I still think it was the best chance for me to have much longer time - the surgeon had one lady (one of the first he operated on) who was still going strong after 10years. And several others doing well after several years and no chemo etc. It is still quite a controversial treatment though!
Hope you are able to have the RFA.
Kay x
Ann - thanks for looking it up for me. It’s quite an interesting article and have answered most of my questions. I think I need to “personalize” it to myself with the help of my onc.
Nicky - thanks for info about NHS. But I’ve with private, so that’s supposed to be even better?!
Belinda - thanks for comparison between RFA and re-section. From I’ve read, re-section seems to be a “bigger” op than RFA? I’d certainly go for an “easier” one the 1st time round! My onc didn’t mention re-section at all. Maybe that’s another question for him at the next appt.
Kay - I’ve sent Jacksy a PM and hoping for some exciting stories to come back.
Thanks ladies. Hope it will actually happen for me after all the excitement. x
Hi M1yu
I had 3 lots of RFA treatment to my liver last year to treat a total of 10 mets (on initial diagnosis). I’ve since had no recurrances and am now 4 months down the line after my last RFA treatment in December and as far as i know am still NED in my liver (I also have bone mets in my left hip and arm). I’ve added in some answers to your questions below though please do ask if you want to know anything else.
- Do you have to wait after chemo for RFA to start? If so, how long? I’ve read somewhere MRI scan on liver is need before RFA to confirm size, location etc. Is this correct?
I finished 6 cycles of Taxotere on 9th January 2009 and had my first RFA treatment on 20th April 2009 so not long at all! I had a midway scan during chemo then another scan after the last cycle both of which showed shrinkage and no spread in other areas. My RFA was done at University College Hospital in London which as i understand it is where the treatment has been pioneered in the UK. My oncologist referred me to Professor Lees at UCH and at my first consult i had a CT scan of my chest abdomen and pelvis and went up to see prof Lees about 1 hour later who did an ultrasound on my liver and told me there and then that I was eligible for RFA. This was late March so only 3-4 weeks between first consult and first treatment.
- How long does the op last? I suppose it depends on the size and how many. I’ve read the possibility of keyhole surgery, I suppose this is a factor as well.
Like you say, it depends on how many lesions need to be treated. For my first RFA they treated 6 lesions which took a while. I think i went into theatre at about 2pm and woke up in recovery around 6pm. Its the scanning and working out correct positioning to effectively treat the lesions that takes time, I think the actual RFA itself doesnt take long at all. The treatment is all performed with a big needle so you dont get the risks associated with regular surgery. I had large plasters on my torso after treatment which i was able to remove after 48 hours.
- How long does it take to recover?
I took a week off work all three times and was a bit tender but basically ok by day 7. In the few days after the first treatment my liver was very swollen so i couldnt breathe deeply and found it difficult to sleep from the discomfort and pain. I had thought that i didnt want to take too many pain killers at that point but actually this is the best way to deal with it. After the second treatment i took co-codamol like clockwork every four hours for the first three days and found it much more do-able (though have to admit that all three times i was very teary as it felt like a big step back to be feeling so rubbish again after chemo had finished - i felt like i was never going to get better). After three days I gradually scaled back the painkillers and stop taking them completely a week or so later and felt on a huge high that the little nasties had been blitzed.
- I’ve read the chance of re-occurrence (think this means liver mets re-occurrence) is quite small if successful. Was your successful/effective?
Im 15 months post-chemo and four months NED in my liver. It seems to be working! My mets were all quite small (the biggest measured 1cm I think). Im also ER and PR + so am on zoladex injections and arimidex. Follow up scans are done every 3-4 months so my next one is late June/early July.
Hope this is useful,I’d also recommend the following website as a good source of info: rfablation.co.uk
Heather.xxx
Hi Heather,
Wow, very detailed info! Thanks a lot for taking the time to reply. It sounds amazing that it has worked for you so well.
I also have bone mets (5 places) and ER+ and PR+ too! And Zoladex + Arimidex were my treatment plan to replace Tamoxifen when it failed, but that was before the liver mets was confirmed, so that plan never happened. Maybe that’ll be my treatment plan, too after RFA (if it actually happens and succeeds)??? (What a small world!!!)
Do keep in touch Heather and let us know how you get on. Would really like to follow your success.
Take care xxx
Hi everyone,
Thanks for your contribution to the topic. I saw my onc on Wed and asked him about the related questions. For the benefit of others who are interested in the subject, I’ll related some of the answers.
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In my case though, things are a bit complicated. There’s now a BIGGER questions mark about whether RFA will actually go ahead 
The main worries are: a) the location - near top edge of liver and b) my breast flared up very quickly (4 months) after my first lots of chemo (6 months of paclitaxel). The main concern is that I’ll have a repeat when FEC is stopped for RFA to go ahead. So, I might need radio to breast before RFA can be go ahead (if it can) to minimize the risk of a repeat. Also, the planned 6 x FEC may need to increase to 8 because the 1st one only showed slight effectiveness (better than nothing but not as much as my onc wanted.)
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Because my 2 lumps are kind of joint together and 1 in each lobe, will need to be zapped twice, one from each lobe. And Heather, my onc mentioned the “big needle” as well.
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My onc said over night stay, but one of his patients who has had it had 2 weeks off work.
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My onc didn’t mentioned this, but said that if it comes back, the procedure can be easily repeated, unlike the resection. My onc’s exact words: “You wouldn’t like parts of your liver being chopped away frequently, would you???” - have to laugh at the simple way he puts it!!!
It seems that not many women can qualify the strict requirements for this procedure. Now, it seems that mine is also not as certain as before. Before, my onc was using the word “possibly”, now he says if it actually happens, it’s a “bonus”. Well, hope FEC will work wonders and shrink the lumps in my liver and RFA will go ahead.
Will revisit this thread nearer to the time. In the meantime, if anyone has any experiences and knowledge, please keep on posting.
Thanks xx
Hi M1yu,
I have now found the post i wrote soon after my RFA last year - I will copy it here in its entirety. It’s a bit rambly, but I’m sure you’ll enjoy reading about whether i had any toast or not, etc!!
"Hi all,
Sorry it’s taken me so long to report back on my treatment (2 weeks ago!)
Well I was referred in November, seen in December, and booked for the beginning of March. I went to University College Hosp, London. They decided I’d need a general anaesthetic (sometimes it’s only a local). I went in, hung about a bit, answered lots of questions (they had NO notes of my medical history, so that took a while). I was in a sort of admissions room - not a proper ward. Then the anaesthetist came and asked when I had stopped taking my Warfarin - I said I hadn’t! In fact I’d specifically asked if I should. Then she told me they’d lost my blood test for the warfarin levels, and would not be able to proceed without them, so it might be cancelled. Then she mentioned that the surgeon hadn’t turned up either!! Eventually all was sorted out and I went in and was put to sleep. The whole thing took a couple of hours, but I think most of that time is spent faffing about with the MRI scanner, having the needles inserted into the exact spot. I can just imagine going in and out of the ‘polo mint’ every few minutes as they keep repositioning it!
I woke up and was taken to a lovely ward, where i snoozed a bit and wasn’t allowed a cup of tea for 2 hours… but it was a good thing really, as I didn’t feel like eating or drinking much. I’d missed the evening meal so by the time I was ravenous, there were only sandwiches available (and I’m wheat intolerant). I could feel a pain in the very spot where i felt it during chemo and often after herceptin (presumably the tumour site), as well as lots of other odd aches and pains in my neck, abdomen and rib cage - I think from bruising, and from being moved around while unconscious. I won’t say i had a comfortable night that first night, but the nurses were absolutely wonderful and kept bringing ever stronger and more colourful pain killers! I wasn’t in agony - just painful enough to keep waking me up each time I dropped off.
The next morning I went for a repeat scan and the surgeon came and spoke to me and said it all looked very good - they take a margin of healthy tissue around the tumour, and he could see they had hit the right area. I will go back in 2-3 months for another scan.
I came home the day after surgery, with a smallish plaster at the bottom of my right ribs at the front. After a few days curiosity got the better of me and I peeled it off to see two needle holes, that was all! They are still just visible, but so are the cannula holes in my hand…
They gave me tons of paracetamol and codeine phosphate to take home, and that was just about adequate. For the next three days I had to take them all the time, and there were a few moments when I was very uncomfortable in my liver (but then I’m a complete wuss when it comes to pain). Then for the next few days after that the pain was more on and off, so i just took them when needed. It took me longer to get over the anaesthetic than the discomfort - not to mention all the weird dreams i kept having, from the anaesthetic!
So, all in all pretty manageable. The good thing is that they can repeat it if necessary, so long as you have less than 4 or 5 tumours. I would recommend it, as it’s wonderful to know I’m currently NED (no evidence of disease)."
Hope this is helpful. I seem to remember I went for a CT scan and ultrasound, and to talk it through at the 1st appt in December. They sent me an appt letter to have it done at the beginning of March.
I was going back every 3 months for the first year, now every 4 months for a scan. I seem to remember I was told to have about 5 days off work.
It sounds like your situation has got a bit more complicated - hope you are able to have RFA at some point
love jacquie
hi jacquie
thank you for such an informative post and you have really helped me this morning, its something i want to discuss with my onc, my tumours have shrunk with chemo but you have given me a boosy this morning, so glad you continue to do well
love galen xx
Hi Jaquie & Galen
Yes, I have read through the details of this treatment and have requested a referral to Uuniversity College Hospital in London. My mets have ‘signicantly reduced’ in my liver but they are still there so giving them a good zapping sounds like the next step for me. We shall see what they say.
Thanks for all the information.
Sue xx
Hi Jacquie,
Thanks for taking the time to look through your old posts and copy it on here. It’s not rambly at all, but very informative. Great to know you are doing well and may your upcoming scan continue to confirm that. It gives all of us so much hope and encouragement when we hear success stories like this.
Galen & Sue, hope you get some good news with your appt regarding the possibility of RFA.
Please keep us update, really would like to hear more success stories with this relatively new technique.
Take care xx
Glad my ramblings were helpful! Just ask if there’s anything else you want to know - not that I’ll remember, of course…
Good luck girls
Jx
This one could be merged into another thread too…?
Hi all
I’m really happy to see all of your positive news. I was dx with liver mets on 5th May as I went to A&E unable to breath properly. i do have some questions though that I hope you may be able to help with…
- I am now on steroids (to reduce swelling - they have worked), I can now breathe fine.
- I am also on Xelods 500 mg x 8 daily.
But thats it. Nothing else. They haven’t done a biopsy. I have cancer in my lymph nodes somewhere & a small amount in my peritoneum. Why have I not seen a liver surgeon? Why is mine incurable? Why am I only on table chemo? I feel like I’m getting palmed off.!!!
I want to treat this aggresively and live for my two children (9 & 6) - can anyone help???
Manda
Hi Manda, So sorry you’ve had to join us on here. I’m afraid I can’t really answer the questions tho. I was dx with liver and spine mets in Jan. I did have a biopsy on my liver tho and I’m on weekly treatments of Taxotere (18 in all and I’ve had 12) There are lots of ladies on Xeloda who find it very good. It’s incurable because it’s secondary. We’re all incurable unfortunately, but the ONC did say it’s treatable and there are lots of ladies on here who’ve had secondaries for years, so please don’t despair. You really need to see your oncologist and make him explain to you exactly why he/she is giving you this treatment. I know that they don’t like to do biopsies on the liver if they don’t need to as they are very uncomfortable to say the least. The only reason I had it was because it’s 18 years since I first had the bc and they couldn’t trace what kind of chemo I’d had at the time so for some reason they said they had to do the biopsy.
I do hope that you are feeling a bit better in yourself today and I’m sure if you get to speak to the ONC it will help. Take good care of yourself and keep posting. The lovely ladies on here are a godsend and can help with loads of advice and support.
Lots of love and hugs coming your way. Dianne x x x
Dear Manda,
I know you will soon get a lot of support from other members on here. Please remember you can also give our Helpline a call for information and support. They will be open at 9.00am. The number is 0808 800 6000.
Take care
Very best wishes
Janet
BCC Facilitator
Hi Manda,
So sorry you’ve joined us and it sounds like a really scary way to be dx with liver mets. Not being able to breath properly would definitely make me panic and that’s probably will make things worse.
I don’t have any swelling when dx in mid April, in fact, no symptoms at all! So, I wasn’t given any steroids. Also, because of that, I couldn’t believe it when I was told that my CT scan showed liver secondaries. I kept on asking my onc whether it would be something else. I wasn’t offered a liver biopsy either, he just told me that he can tell from the CT scan that they are definitely cancerous. No further questions were asked because I think the answers probably will be too technical for my already chemoed brain anyway!
From what I’ve read, Xeloda is a very good chemo. Even though it’s in tables form, it doesn’t mean it’s less effective. I’m currently on IV chemo, FEC, but was told if it were to fail, I’d be having Xeloda.
Manda, we all want this nasty illness to go away, you are not alone in this. I don’t have children, but I want to live for my parents. We all have something or somebody to live for. Take each day at a time and take it easy and look after yourself.
Any time you want to come back for more support, feel free to do so. There’s another thread call “anyone else with liver secondaries”. I found it very supportive and comforting.
Sending you lots of love and hugs and positive thoughts xx
Hi Manda
Sorry you have had to join us. I was dx with bc and liver mets at same time in July 07 and had 3 x FEC and 3 x taxotere. Then been on Herceptin since Dec 07 and am now on xeloda too - same dose as you 4000mg a day. I too have small children 6 and 3 and so want to stay around for them.
I didnt have a biopsy either and my onc says cant have resection. Although seriously gonna look into RFA after next scan if all still stable.
It is a horrid disease we are having to live with. Get your DLA sorted out if you havent.
Hope you are ok.
Love
Dawn
xx