Thanks for the update, deb, and hoping whatever happens you will continue with successful treatment. So lucky that your spine problem was a disc! We often forget that our bodies are vulnerable to all the more ‘normal’ problems too! Yes, I’m on cape now and find it very tolerable. Now just hoping it works. I will have a scan before long and like you will suffer scanxiety. Fingers crossed for us both. I hoped my post would ‘bump up’ the ablation thread and catch your eye.........it worked! All the best for now,
I saw my oncologist a few weeks ago as I was having severe pain in cervical spine ( turns out I had a bulging disc and not cancer related) I queried the referral to the Liver specialist and he said he hadn’t heard back yet. I’ve got tomorrow off work so might do a bit if digging around to see what’s going on.
Apart from the disc problem ( now resolved) I’ve been basking in the loveliness of that period between scans. Next CT scan is 3rd week of May then scanxiety starts up again. The one good thing about this wretched disease is that it teaches you to “ Live in the moment” and appreciate the days when you feel ok and are able to be “ normal” for a while.
I hope you are ok Mo, I think you are on Xeloda now? I hope it’s tolerable for you and working it’s magic.
thanks for getting in touch xxx
Debs.........mermaid.........just hoping all is well with you, whether you had rfa or not. Thinking of you,
A short reply from me.
Thank you mo for your praises. I only try to pass on what I have learnt and how it has helped me, something unfortunately that all of us secondary ladies need to do.
I agree that RFA is the best way forward but if any lesion is too big (more than 2.5-3cm?) this may not be possible. Therefore Debs, arm yourself to the hilt! It’s so important that you get your own message across to you team. As I have always thought this life we have is not a dress rehearsal therefore we have to do it right (even if we didn’t have the burden of SBC hanging over us!)
Thank you Jacksy,
I will certainly be pushing for the RFA,
will keep everyone posted.
hope you feel better soon
Thank you so much for your thoughtful reply and the added groundwork you have done for me on the QE.
I’m so pleased you are feeling better and I hope that Cape works well for you, it certainly seems to in a lot of cases.
I will keep you up to date
Hi lovely ladies,
Just wanted to say that in my opinion itis worth pushing for radio-frequency ablation. It's very non-invasive and low risk, especially compared to resection. The biggest hurdle is getting over the general anaesthetic (and getting accepted of course!). I think I had it done 3 times, at UCLH, when I had only one liver met. (It was located close to a big vesel so they knew they hadn't killed it all with a good margin, hence why it grew back)
We have to remember that our oncs are medical oncologists, so they specialise in medications such as chemo. They have to make an extra effort to keep up to date with new procedures such as ablation, radio, surgery etc. I'm fortunate in that my onc will consider options I bring to him, so he had no hesitation in referring me once he had found out more about it and knew I met the referral criteria.
All the best everyone. I'm enjoying an unexpected lack of nausea today after chemo yesterday. I've got a heavy cold so I don't know if it's because of the other meds I've been taking or because I cant smell anything! Would love to know - it's a mystery
Debs/Mermaid..........As usual do listen to Nicky. She has lots of experience and interprets everything so well. She has loads of experience and puts it all so well.
My advice is to certainly push for the liver ablation. You say that your onc has made contact with QE in Birmingham. You may have to chase a bit to find out what is happening. Perhaps you could contact the relevant QE department.........people on the phone are often very helpful!..........and find out if you have been referred and what might be happening. Or ask your onc's sec to find out which dept he referred you to, and which radiologist. Some secs are very helpful. My onc is based at the Churchill, and he knew that it is done there, so he referred me there. At that point, last july, I appeared fully stable with bone mets that hadn't moved for 3 and a half years. The only movement had been one liver spot. My onc said that you qualify if you have liver mets moving, but you are stable elsewhere. QE Birmingham should know that. It also makes a difference where the liver spot is..........it can't be done if too close to the heart or the aorta or anything vulnerable, but QE would look at scans.
I found I had to chase not my onc but the consultant radiologist who was going to do it! It was all very slow. I got to know his sec, Sam, quite well in the end! Once I phoned to establish what was happening.........she knew nothing........but.........actually she might have seen a piece of paper with my name on on his desk the day before! Off she went to find it. Even establishing that he had accepted me took 2 months. My spot wasn't typical apparently, so he wanted a biopsy which took weeks to decide, then weeks to arrange. None of this will be the same for you of course, but I mention it because we all have to be prepared to chase in case we are forgotton. Try to get in touch with QE and find out names. It will be done by a consultant radiologist. I have googled and found the QE leaflet: https://www.uhb.nhs.uk/Downloads/pdf/PiLiverAblation.pdf is the link.........I just googled 'liver ablation Queen Elizabeth Birminghan', and at the bottom it mentions Dr Mehrzad and Dr Karkhanis. Perhaps you could contact their secretary, Claudette! It gives her number. She could be very helpful.
I do agree with you that the RFA is worth doing. You put it well to say that losing the liver tumours would reduce the overall burden. Your onc should be prepared to help you to have whatever is available these days, and your stable bone mets should allow you to qualify. I was accepted with stable bone mets so it must be ok with NICE. And you are right not to waste too much time. You may have to have an mri to confirm things, unless you have had one recently.
The actual ablation is very doable, and even though I am moving on to cape I have lost 2 significant tumours which is good to know! Apparently I now have spots which showed up in the January scans.
I hope it all goes well for you. I don't understand your onc's hesitation. I am in a similar boat to you healthwise as I wouldn't know i had cancer. I feel fine. But I know it won't stay like that unless I do something, hence the capecitabine! My homework now is going through the cape threads! Dear Nicky posts there with her usual reliable and valuable advice and support. I expect to start next week.
I'm just rambling now, Debs! Do keep us up to date about what is happening. We all need to benefit from anything on offer out there to help keep us as well as poss. i feel fine again now........normal........after my a&e episode..........but I am sure cape will make a difference to that, although you never know with chemo. Everyone is different so I have my fingers crossed. Sorry if I have rambled a bit. It's getting late! Take care, and let us know what is happening,
Its hard enough fighting this disease without having to fight the NHS funding and standing up to Oncologists as well, so exhausting. My gut feeling is to push but I think the brick wall is going to be thick. We will see.
As I said in my brief PM reply I’m away at the moment but will try to answer or add my experiences.
I also have (multiple) bone mets and thought a few years ago that a liver resection would be out of the question. However it was spoken about a couple of years ago and prior to that so had RFA. However on both occasions my liver mets had got too big for RFA (there are parameters that are set as a safety measure I should think) and also at one point I had too many liver mets, with one big one, which necessitated chemo. This chemo brought them back under control, and made most of them ‘disappear’. That’s when the liver resection was spoken about again. I think I’m very lucky that my local hospital has a brilliant liver (and abdominal) cancer specialist and team and I think this had something to do with my being able to have it done. I feel they like to keep their hand in so to speak and I was obviously a good candidate! It’s possible they don’t have too many of this type of operation to do so they are keeping in practice? Bone mets weren’t even mentioned although they did know I have had them for 11 years now and for the last 6 they have been stable. However I agree with mo that probably funding could be an issue.
As to trying to get your onc to consider this I know what it’s like. A second opinion I had at The Marsden last year, prior to my op taking place, also said that it wouldn’t make any difference to my outcome however funnily enough when his letter came back to my local oncologist he actually said it was worth doing ‘if I could find someone to do it’! My own oncologist said that the size of the biggest lesion, which was about 6.5 cm, would mean it would not be able to be got rid of by chemo or hormone treatments alone, surgery was probably the only option. I think the fact she was coming up to retirement made her throw caution to the winds and agree to everything as previously she had been rather reluctant to suggest anything that wasn’t straight forward.
I also was aware of the window of opportunity knowing I was in good health overall and more likely to make a good recovery. It’s worth noting that on Faslodex you don’t need to stop your systemic treatment whereas you do if you are on chemo, even Cape. Your immune system needs to be in good shape and knowing about the recovery and regeneration afterwards means you can’t have chemo after for a good few weeks which would interrupt your treatment.
I hope this makes sense and do ask anything else that you think I can help with, I’ll get back to you as soon as I can.
Mermaid........Debs..........just to say i have just read your post and will write back in more detail later, or perhaps tomorrow. I have had my little grandaughter to stay, and mummy, so have been busy. This evening I am winding down after they left earlier on. Also I would like to reread your post before launching in! But as you say we all do have to fight our own corners. I have learnt that myself. Also I have learnt that different hospitals have different protocols and different funding arrangements. It is probably also true that treatment options and decisions differ between oncs, and even between their MDTs. I find that my onc can say something quite new after a gap between appts.........I have decided that he changes his mind and advice after MDT meetings! I am sure the MDT principle is a good one, but it can also muddy the waters. there can be variation of opinion, perhaps even depending on who is at the meeting. Human, all too human.
Anyway, I will reread your post and then throw in my penn'orth! I am on a learning curve of my own of course. i wish I had know much more a long time ago. I was 13 years from my primary before my secondary appeared. I thought it was all over! ignorance is bliss, but also it meant I was unprepared. Then i had three and a half years of stable on letrozole which again I thought would last forever. More to learn. Ablation seemed a simple idea, but in fact my stability was superficial.
You use the word 'radiation' with, I think, reference to RFA. Remember that RFA is based on radio frequency..........Radio Frequency Ablation...........like the radio waves in the radio, rather than radiation/radiotherapy. Also in the end my mets were microwaved, which was unexpected for me, but used more and more now.
Better have some supper. I am still trying to regain my lost 5 kgms. About 3 to go! So eating is what i should be doing all day! Normally I am just a 3 meals a day person and eating between meals makes me lose appetite. Also with the kidney stent in I should be drinking more. off to the kitchen tap!
Take care everyone who might be reading this thread!
Can I please have your opinions on treatment for bone and liver mets.
saw my oncologist last week and after 3 months on Faslodex all is stable. Just a quick recap I have numerous bone mets found over 4 years ago which was 16 years after primary. Was stable on Exemestane till Oct last year when a liver met popped up. This is 1.1cm according to CT scan.
I asked about Cyberknife to the liver met. Oncologist sent a letter to QE Bham but was rejected as I already have bone mets. I have now asked about RFA and he said it might be the same answer as before. Because I already have bone mets they won’t do liver. I argued that I’m pretty sure they would if I was a private patient he said the NHS has strict criteria so I’m guessing it’s all down to funding. I know the ladies on the US forum are getting zapped pretty much when they want. He said RFA might be possible BUT as I’m in good health generally and I’m currently stable then leave well alone. I argued that “ isn’t it better to radiate it before the horse bolts and Ive got a 5cm liver met or even multiple liver mets”? He thinks not but has reluctantly agreed to send a letter to a liver specialist at QE Bham.
Girls I’m exhausted with it all, I’m so scared to miss “ a window of opportunity”. My oncologist actually said “ radiating the liver met is not going to extend your life” I argued that with bone mets alone I can carry on for a long time but liver involvement surely shortens the odds. He said the whole body has to be treated systematically when there is more than one location of mets. I argued again that it would reduce the tumour burden on my whole body. We went back and forth but he is sending a letter, I’m not hopeful.
My close friends say I need to take a step back and enjoy my stable period. Maybe they are right as I’m sending myself a bit crazy, slept for 12 hours last night.
What do you think?
One more point about me being scared to “ take my eye off the ball” when Exemestane stopped working my previous oncologist was going to put me on chemo as they didn’t fund Faslodex. Through my own research and sheer determination I found a hospital that funded it and was willing to take me on. So I realise we have to look after ourselves in this nightmare.
Ok that’s me done.
I will really value everything you say or suggest.
I hope you are all really enjoying this lovely very mild weather, my love to you all xxx
Oh Mo you have been through the mill, I’m so very sorry this has happened to you on top of everything else. We were all so worried about you but can now understand why we hadn’t heard anything. Thankfully it sounds as though you are feeling much better now.
Im off to work now but will message on here when I have a bit more time about my chat with my oncologist re RFA etc. Good news on my CT scan that I’m stable after 3 months on Faslodex.
I need to pick yours and Nickys brains about liver mets.
speak later and you rest dear Mo xxx
I’ve just read your post again. Yes, absolutely go for the capecitabine. At first I thought your onc sounds a bit lazy, really, not doing the referral to urology for you and making you do it yourself, but I guess if he had no paperwork he probably thought your GP would have had a letter about your hospital admission so would know what to put on the referral. Really hope you get some answers from them, and hoping the change to Cape is hassle free.
Well done for taking care of your self and building yourself up with walks and good nutrition. I bit of fresh air and getting moving does so much for your mood too, especially now spring is starting to peep through. Hope you’ve got some time planned with your granddaughter in the near future - so precious
Thanks for giving us your update - well what a mill you’ve been through! It sounds awful, and as is so often the case, compounded by delays and teams not communicating with each other. I’m shocked at your onc, it seems ridiculous to offer you no treatment as an option! Especially as nobody has yet established what, if anything, is going on in your kidney. If kidney function tests etc are all clear is it possible you simply have one slightly large kidney? They haven’t informed you what, if anything, they found when they inserted the stent and I wonder if anyone has bothered to compare the size of your kidney with previous scans.
Dear Mo, you must be feeling so rudderless. Is it time to either take your bolshiest friend/relative to an appointment with your onc, and demand a review if all the information, and a clear (preferably written) report of the findings and the plan of action, or else go elsewhere for a second opinion? Now is not the time to be polite and submissive. Easy to say, I know, when it’s someone else. When you’re in the thick of it, you feel so vulnerable and can lose your confidence.
I don’t know what else to say. I can’t see your post now that I’m typing this, so I’m sorry if I’ve got any facts wrong. But know that we all feel frustrated and angry on your behalf. Please keep us informed of what happens next.
Wow mo, that is a difficult ‘story’ to tell and no wonder you had said on the other thread that you were summoning up the energy to write about your experience. I can’t imagine what you have gone through and had to deal with. I think we all, in the back of our minds, know that at some point we will have ‘that conversation’ with our oncologists but not when as far as we know there are more treatment options and we feel as well as we do. A huge shock when you weren’t expecting it.
I do hope you regain the weight you unfortunately lost, it sounds like you need it when you have always weighed in at such a low weight overall. And of course I’m hoping that Cape will work and knock back all those little uggers.
Thank you also for your kind words about my help on here. I try to give back as I have found such great advice and support over the 11 years I’ve been on here, some things that have changed my view on my particular BC as well as knowledge to fight my own cause with my oncologists.
Good luck to you mo, do keep us updated on whatever thread you’re on next and feel freee to PM me if you want - that’s if it works! I’ve not tried it on this new forum format yet!
Hugs to all other liver ladies, how are you all doing?
Well, I have at last summoned up the energy to share some info about my recent experiences. In fact I have felt quite normal again this last week, despite not regaining all my weight yet. My general collapse was due almost entirely to my stay in a local a&e dept........one week. I was discharged on Christmas evening at 6pm.
Firstly I should address Mermaid/Debs..........don't be put off by my experience. If you are offered liver ablation, take it. It can be extremely successful. But it is hard to qualify in the first place. I initially qualified and had 2 tumours removed plus one extra 'spot'. It was done under general anaesthetic, took perhaps an hour, and I stayed in the Churchill overnight. Dr Anderson looked at a ct scan the next morning. There was one more spot to do but that has now been cancelled by my onc because of new progression seen on a PET scan. You have to be 100% stable.
I had the ablation done on 13th Dec 2018 and according to the consultant radiologist who did it it all went fine! He was very happy. I was happy too, because he was. I was sent home the next day, and was doing ok but by day 5 the pain in my right side was excruciating and I was worried about infection. To be fair Dr Anderson did say that the main side effect was pain, but the reality is worrying. I contacted him via a nurse and was told to go to a&e, just in case. My nearest a&e.......Wexham Park Hospital.......is not in my Trust, but the ambulance wouldn't take me to Stoke Mandeville as it would be almost one hour away. This is due to a&e closure locally. I arrived and eventually was given an ultrasound scan which showed the liver ablation was fine, but she noticed that my left kidney was enlarged compared to my right. This caused all the ensuing problems. I was given a bed.........after midnight and all day in a&e.......where I saw a urologist the next day. In fact I saw several urologists, none of whom were sure what to do or why. I realise now that I should have been sent home to recover from the ablation before any decision was made. I had no symptoms…...no UTIs, no pain, no blood in urine…….. which seemed to annoy them! I had come because of the ablation pain. Also my kidney function tests/bloods were fine and always have been. This enlarged kidney had never been raised before.
The decision was made that the kidney was blocked for some reason..........metastatic cancer?.........but they weren't sure what to do. When was my last scan? I had had a CT in August, an mri in september, and another CT 5 days before the ablation, and a CT the day after. They were puzzled. They finally decided to put a stent in my ureter to allow urine to flow. They thought there might be cancer in the surrounding lymph nodes blocking the flow. But booking the op proved impossible for them. Again I feel i should have been sent home with a definite booking in the near future within my own Trust. However they put me on 'nil by mouth' from midnight to 4 pm for 3 consecutive days on the off chance they might be able to do it. This suited their booking arrangments, but meanwhile I was quietly starving, especially as my body was under pressure from the ablation. I was in the ‘flu’ phase. The liver has to work hard to heal.
Ablation..........I was given a booklet which stated that pain could be a problem and to visit a&e if the pain was more than could be controlled by paracetamol. Also it clearly stated that a few days post ablation you can suffer from flu symptoms, with some people suffering 'ablation syndrome'. Certainly by the time I arrived in a&e my temperature was going up and down. This was not noted by the urologists, but was noted by the nurses. Basically I was in the flu phase, but was being starved at the same time, while my liver was trying to repair. I should have been sent home and referred to my urologists in my own Trust. This hospital in a different Trust had ZERO access to anything about my history, or any previous scans etc. And they sent nothing to my onc about my treatment there. But i wasn't feeling well enough to argue. I was going rapidly downhill with so little to eat. In the end they did the op.......another general anaesthetic.........on the afternoon of the 3rd day nil by mouth. I looked fine and recovered well, but eating was becoming difficult, and I wasn't improving. But I could walk around so they assumed I was fine. I now have a stent which causes no trouble but they left it with me to tell my onc and have appropriate scans.
It took me quite a while to recover once home where you have to do everything. My daughter-in-law came to stay after Christmas to support me in my initial recovery………..I was in bed almost all the time……….she was amazing……...despite having to leave little Anna (7) at home in Bournville. Daddy had to pitch in there. I lost 5kgms.
I saw my onc 3 weeks later who wanted a PET scan, and an mri, which eventually showed that I have spots in a few lymph nodes and more in my liver. I think they only showed up in the PET scan. For this reason he won't consider me having the ablation of the last liver spot. Also it means I must change my treatment.
Initially he gave me 3 options.......epirubicin, capecitabine, or.......wait for it.......nothing. With sad eyes in my direction. I'm afraid that the last option being offered was a bit of a shock. i didn't think I had reached that point. I felt I had to justify why I might choose a chemo going forward. I mumbled about my little grandaughter, and wish i hadn't, as it was a bit emotional. I really felt that I had unexpectedly finished all my options so soon. A shock. By this time I had fully recovered and am still asymptomatic. I wouldn't know I had cancer. I had found docetaxel quite hard in 2017......big D.......he pointed this out as if it meant not worth trying another. But nobody finds docetaxel easy, and I had perjeta at the same time which is also hard on big D and some people stop perjeta because of it. In fact for the last 9 months I had no ses with H&P at all. But it didn’t work for me.
My friend who was taking notes suggested I take 3 weeks to regroup.........to regain that 5kgm. 3kgm to go. He agreed. But my onc is always rather depressing, and has hit me hard this time. The suggestion to give up now as an option was hard to take. But I am determined to give cape a go. Why shouldn't it work for me? I want to be gramma for as long as poss. As Nicky has found out with careful research epirubicin is rather obscure given on its own.
My onc left me to arrange an appt with a urologist via my GP. This was a bumpy road…...so hard to pin a GP down, even with an appt……….which she unilaterally cancelled........?..........I had to make a fuss……….but I now can’t understand why my onc didn’t do that. It was done quickly online in the end. I see the urologist at my usual hospital in my own Trust on Monday. Hopefully he will throw some light on what if anything is wrong with my L kidney, and when to have the stent removed. My onc said the kidney doesn’t seem to be working, according to the scans, so the stent can’t be helping. He had no explanation.
I am sorry to rant on. But as I have said my complications arose from the episode in a&e. Perhaps it was as well to discover the otherwise unseen spots on lymph nodes and in my liver. i’ll never know. But my weight loss and becoming poorly was not without reason. I am sure I would have been fine otherwise, recovering from the ablation alone. I was so positive about the ablation……...so lucky to qualify……...but now am rather negative.
But I am feeling much better, going for walks, and eating as much as poss to recover weight. I have always found it hard to put weight on, all my life, but it has never really mattered. I have been extremely fit and well at a steady 7 stone! I am targeting 45 kgms. This morning I was 42.4. Getting there.
All the best with all the brave ladies out there! We have been given a difficult hand, and it never gets easier. I was stable for 13 years from primary, then a stable secondary for 3 and a half years on letrozole. I am 5 years on now and will join the cape ladies soon, whatever my onc thinks! They have a very supportive and informative thread. Nicky, you are a great contributor there too! I respect all your advice. You watch over us all! Our guardian angel! Thank you so much. You should know that we all appreciate it.
Take care everyone, especially debs, Nicky, Jacksy, Linda, Bon, feelthefear, Anne, everyone who comes here. All good wishes were carefully noted and make such a difference. I think we can all feel very alone. I certainly do. Sorry about rambling on, but it does me good to have a rant!!
live just realised you had your liver resection ages ago....I was thinking it was in December, so scrub the irrelevant comments about recovery! Chemo brain today.....
I’m still chuffed about your scan results though 😁
Nicky, that’s great news! I’m so glad for you. Hope you can see small increments of recovery in your activity, energy levels etc but don’t rush it, your body’s been through a lot.
Hi to everyone else and hoping you’re all in a good place today. It’s beautiful sunshine and blue skies here in Hertfordshire so I’m feeling sunny, despite having Kadcyla yesterday.
Soooo happy for you Nicky, really made my day.
great to hear Faslodex working I’m waiting to have my first scan since being on this treatment so it gives me hope it might be working for me too.
Well, eventually the day arrived for me to get my CT results and, hooray, all things are stable. There are no visible mets in the liver and just a small lymph node (elsewhere) that has increased by a millimetre or 2. I had to wait nearly a month for my results as the scan was just before Christmas and my oncology appointment was put back 2 weeks (probably to allow the scan to be fully reported, the actual scan is always uploaded immediately). I was happy to wait, ignorance can be bliss sometimes, but did want to know obviously to know if I'd be changing treatments. Glad to say I'm continuing on fulvesteant and all the post-op recovery has been well worth it as my liver is still NED (even if the crafty little uggers are hiding and too small to be seen yet!)
Good luck with all of you having surgery or other procedures such as RFA. Would love to know how you are all doing.
Thanks for the update and great news that the ablation is now taking place. I know what you mean about delays in getting more scans done to determine what is needed and then running out of time to get a procedure done. I wish you a quick and speedy recovery - at least you are only in overnight and I'm sure won't be in too much discomfort after the procedure.
Holding your hand and sending you strength. Would love an update once it's over and done with.
ps Echoing mo's thoughts and sending Seasons Greetings to all xx
Good luck on Thursday Mo
Your long wait is over which must be good.Take all the support that your friends offer.
Good luck for Thursday, really pleased you are finally getting the RFA. I’m sure all will be fine and please let us know how it went as soon as you are able.
first of all dear Nicky, I hope you and your family have coped with your recent loss. I lost my mum and dad just a few years ago and I do understand. Still miss them every day. There is so much to do when one feels least like doing it.
I am posting today just to say that my ablation op has finally arrived and I go to the Churchill in Oxford on Thursday. It has been a long journey to get here.........my onc referred me back in July!........but there we go. The mri that oxford asked for in August ran out of time but they decided not to have another in the end because so much time had already slipped past. I had a ct on Saturday instead and met the radiographers who will be there on Thursday. I am nervous........but have no choice, so will go forward with hope. The radiologist said I have 4 spots he is targeting. I think 2 may be small and uncertain but he said he wants to make the most of the opportunity. I will have to stay overnight......ugh......because of the general anaesthetic, then home alone, although I have good friends.
Anyway I thought I Would update in case anyone in the threads is looking for liver info. Ablation certainly sounds a good way forward although as we know there are awkward restrictions. I think I am lucky that I have been able to wait so long.........my liver mets seem to have behaved, with at least no reduced liver function, and I still feel fine. It is not done at every hospital so that means radiologists are under pressure I suppose. My plan is to come back here to report about my experience and recovery!
take care everybody, and Seasons Greetings!
Keyhole surgery, that’s good! Your recovery time will be so much quicker than mine and also the scar won’t be as big! It must also mean that your liver lesion isn’t too big so they are able to access it all without opening you up so to speak. Yes, do update us all, shared knowledge is a really good thing especially when it’s first hand rather than reading about it in some medical pamphlet as many of the less mainstream treatments don’t get so much information written about them.
Hi to all other liver mets ladies, hope you are doing well. I’m still a bit overwhelmed by the paperwork associated with my Dads recent death (mainly due to it happening whilst he was abroad on holiday) so am not on here as much as I usually am. I hope that can change quite soon and I can get back to some normality - whatever that might be!
Thank you Nicky that's really helpful. I have just heard they will do laperscopic surgery within 4 weeks. I'm so relieved not to need chemo. I'll keep you posted xxx
Hi Anne, I’ll try to help!
My largest liver met was in the right lobe and therefore very accessible. It had been biopsied on 2 separate occasions so I knew they could get to it! I had 2 smaller mets show up on a pre op MRI (they were too small to show up on a CT) and these were all removed in the op.
I had to go into hospital the night before to be ready for the following morning, I was first on the list. The op it self I think only took an hour or so, maybe a bit longer. I came around in ICU and stayed there overnight before being sent up to the post surgical ward. You are fitted with lots of tubes to deliver pain killers, some of which allow you to dispense extra pain relief and also drains to get rid of fluids. I was able to eat once I’d come round sufficiently and in general you stay in ICU to make sure there are no complications. On the post surgical ward I was also kept under close observation, right by the nurses station. Gradually tubes were removed and pain relief reduced. I was encouraged get out of bed and sit in the chair on that 2nd day and you have to do deep breathing excercises to protect against pneumonia. That day, or the next (I can’t remember which) my catheter was removed which was a nuisance as I now had to walk to the loo! Luckily the 2 bed ward had an en suite. I was discharged from hospital on day 5 which was a bit of a shock as I suddenly had to rely on tablet pain relief. That was the worst bit, going home and managing on pretty low level pain relief. I’m sure I could have got something stronger but wasn’t prescribed it (unfortunately). You are encouraged to walk and not just sit around, either in hospital or after discharge at home. My stitches were removed about a week or so after the op, leaving a very long scar which healed well. I wasn’t able to drive until 4 weeks after the op, although that is down to your insurance company rather than a directive from the consultant. I think that’s about it but ask any other questions and I’ll try to answer although I’m not on the forum so much at the moment due to a family bereavement which is taking up a lot of my time at present. My op was done at the North Hants Hosptial in Basingstoke where there is an excellent surgeon, look on their website for more info as it is a centre of excellence for abdominal cancer surgery so I knew I was in the best hands.
Hi to all other liver mets ladies, I have been reading but not had much time to log on, hope you are all doing well. Xx
I always read this thread as I like to know what is being offered for liver mets. I have had liver mets since 2014 - first lot of docetaxel got rid of them but they came back in late 2016. Unfortunately the largest one is in the most difficult place in the liver it could be (typical!) ie right under my diaphragm. I have been on kadcyla, eribulin & currently on paclitaxel since Oct 2016 & it just keeps increasing a couple of millimetres between scans. Originally I was told that ablation/resection was not an option & was actually on the table ready for a liver biopsy when they changed their minds & said it was too dangerous to do the biopsy. It all gets very frustrating!
All the best to everyone with their treatments. Hope to see you soon Nicky.
I have just been told that a liver met of around 2.5 cm has reappeared in my liver. The last time was 2 mets in 2015 which were ablated. The MRI shows a difficult position so RFA not an option this time. I've been given an outpatient appointment to see Professor Heaton head of liver at Kings on Monday. The nurse said on the phone that he will see if surgery is possible. I think the met is in the right side of my liver. I was looking on the forum for women who have had this treatment an d found you! I've got lots of questions that will obviously be answered Monday but in the meantime can you tell me more about the surgery/ hospital stay/ recovery time etc. Also what will happen if he decides he can't operate? I'm dreading the thought of another round of chemo.
thanks in advance
Well at least you are a step further to ablation. We seem like performing seals having to jump through hoops to get what we want. I didn’t realise you had to hav a failed treatment to get RFA just thought you had to be stable! I continue to learn.
Keep in touch and yes stay warm xxx
Thanks for letting us know, Debs, about your biopsy result. Mine too confirmed that the liver spot is a secondary. No surprises there really. My onc says if he refers anyone again for ablation he will book them an mri and a biopsy beforehand, to save time! It has been 3 months since his referral at the beginning of August. Anyway, your result seems to mean you will continue with faslodex which has the very nice advantage of being an easy treatment for you! Aching bones behind you! For me the result should now mean having the ablation, and I wait for a phonecall from the churchill team. They can't possibly want any more tests! Also my biopsy came back HER2-ve, so I will probably come off the herceptin, although he has put off that decision for now. Seems to have been a pointless year on it, plus docetaxel, but I needed to have one failed treatment to have the ablation, so not entirely wasted!
Love to Nicky while I'm here.........you might drop by to catch up. We are still thinking of you at this difficult time.
Love to everyone else! keep warm! The short days are a bit of a shock.
Just a quick update. My liver biopsy confirmed it is metastases and the receptor ER positive 8/8 and PR positive 8/8. This is interesting as my bone mets are Er positive 8/8 but PR negative proving that the receptors can change. So I am continuing on Faslodex which I am finding such an easy treatment and am hoping to respond well. Having come off Exemestane I didn’t realise how much that made my bones ache, I always presumed it was the bone mets aching.
Hope you are all doing ok
Thank you ladies for your kind thoughts. It is tough dealing with this on top of everything else we have to deal with having SBC. I am not getting much ‘me’ time as you can I again, which is how I normally re charge my batteries so I need to get that back in place soon or I will get very run down, and we all know how that doesn’t help us!
im so sorry to hear about your Dad. Such a difficult thing to have to deal with on top of everything else. Sending you hugs and hoping you find comfort in the love and closeness of your family
Nicky........like debs can I just send my sympathy to you and of course your mum. It was obviously a shock, but as you said it is important now for you to keep as well as possible to cope and help your mum through. We are thinking of you and you are in my prayers.
Many thanks Deb and mo. Sadly my family crisis has been my Dad dying unexpectedly so there is a lot to deal with including supporting my Mum. I will be making sure that I look after myself, as much as her, because I have to make sure I am not overdoing it and getting run down. This is something I did not envisage, as far as I was concerned I was going to be gone way before either of them passed away as my adult daughters astutely told me! So this definitely wasn’t in my game plan! Anyway, thanks again for the support, things are calming down a little bit now so I have a bit more time for things like the forum which I generally check each day and I can keep following and keeping in touch. Good luck with everything - results, treatments and new oncologists.
Nicky........like debs just sending sympathy for your family crisis. I do hope whatever it is will resolve happily in the end. But don’t forget to think of yourself in the midst of it. Take care for now,