sorry to hear you have a family crisis to deal with. Most of our emotional resources are spent on keeping ourselves well and so it’s particularly hard when something else hits the fan too.
thinking of you
Glad to hear the biopsy wasn’t too painful mo, and good luck with the injections etc Debs. I don’t have mammograms either, as mo has said any changes will be seen on the CT.
I may not be on for a while as I’m dealing with a family crisis right now but will be trying to read as and when I can.
Thanks for your response, debs. Yes, one more box ticked, and hopefully moving on to the rfa. You mentioned your mammogram. I was offered one last year..........they pop up automatically with no reference to individual circumstances, just age. I rang the mammogram team and they were reluctant to advise me so I cancelled it until seeing my onc. It could be rescheduled. He said that now that I am stage 4 it wasn’t relevent any more. Any change in my remaining breast would show up in ct scans, and my treatments are whole body now. So I didn’t rebook. I think you should just mention it to your new onc........who sounds excellent by the way........a fresh start such a good attitude........and he willl advise what he wants. At the same time having a mammogram won’t do any harm but as you said I also just felt I could do without any unnecessary tests these days! All that poking, prodding and pushing!
take care debs, and keep us updated on your new onc and any changes or adjustments. We learn by sharing with each other, and personally I like to know what is happening to those I ‘meet’ here on the threads. I think you should feel confidence in this new onc. A fresh start, which you needed.
Well done Mo another box ticked. So pleased it went well and sounded similar to mine in that he said it was easy to get at and not deep.
I haven’t any results yet but started my Faslodex injections last week. My new Onc at new hospital wants another set of scans so we can start off fresh and see how Faslodex works over next 3 months. Have had the MRI and got CT scan Friday.
I’ve also got mammogram today, do you still have these? I was wondering as I’m already stage IV is it even relevant? I’m starting to feel like “ leave me alone now” I’ve had so much prodding n poking the last 3 months, all necessary but will be glad to just settle into my new meds routine and lay off scans/ biopsy’s for a few months.
Just to update that I have survived my biopsy, although I do feel I have been kicked in the tummy! But not bad...........have not taken any painkillers............and my worry about bleeding was unfounded. Small scar has healed up fine, and no evidence of internal problems at all. I have taken it easy........very!........which may have helped. The radiologist who did it was very nice and fortunately a consultant.........it was on his badge! Not a trainee! He said it was very accessible indeed..........easy to get at and not near anything. That’s just luck. He said in his opinion it is a secondary..........i have thought so because of how it shrank post chemo, then grew again. Suspicious. But he was very keen on the rfa............has excellent outcomes. So.......roll on rfa! I suppose it will be a few weeks before I get a result.
anyway, I have survived intact, so thought I would just post the fact in case anyone else coming here has a liver biopsy on the cards. I was given a canula......just in case, for fluids, or whatever. Not needed. Also no food for 8 hours, but again just in case sedation was used. It wasn’t.
Hope everyone is well today. It’s raining down here, but really quite mild. Autumn gently arriving. Take care, everyone, especially Nicky, debs, jacksy..........everyone.
A quickie. All the best, debs, for your results. After reading both Nicky’s post and mine you can see how confusing liver results can be! But at the same time it is good to know that. Forewarned is forearmed! You will be able to discuss the results with real experiences behind you. Certainly the liver can have a different status, and the normal liver can be sprinkled with little cysts, haemangiomas, etc. My Churchill meeting apparently had liver surgeons there too........adding their experience of liver conditions and appearance.
nicky.........you have travelled a long and complex road! But the liver has been that problem. So diverse. Well, breast cancer isn’t all that straightforward generally. I had dots at the sec dx which US radiographers said we’re probably cysts, and they haven’t changed. Just the one spot. My question now would be if it isn’t a sec then why did it shrink with docetaxel? But of course docetaxel damages lots of cells of course, hence losing hair, etc. In a way I am hoping mine is confirmed as a sec which would be simple. Straight to rfa, with further in the future if needed, or resection. Certainty.
Like you, Nicky, I think the more we share the more we all learn and are armed to understand and discuss our position. I like to know what’s what! Oh, and my her2 was the result of the FISH test at the Churchill. My onc nearly put me on h&p 4years ago because of it. But a subsequent MDT meeting decided that as I was stable and well, to delay it. That proved correct, and in the end it didn’t affect this liver spot. This breast cancer is not as uniform as presented to us. And as you experienced, it can be ‘rogue’. My onc does point out occasionally that there is still so much we don’t know.
well, this was supposed to be a quickie! Take care anyone here reading. Our rambling posts are due to the awkward livers we all have! Non cancerous livers can be a problem too! Enjoy our Indian summer.........a perfect day ahead down here in bucks.
I wait with anticipation the biopsy results of mine. My bone biopsy scored maximum 8 for ER but negative for PR and HER. My primary in 1999 I was just told ER positive. Goodness knows what this little ugger will come back as! Will let you know.
Its interesting you have mentioned HER2+ regarding a skin met and I hadnt realised that you had changed treatment types. I’ll add my story here, mainly for anyone else who searches and finds this thread as it is full of information about liver mets and treatments for them.
My primary was in 2003, strongly ER and PR+, HER2 wasn’t even being tested then! Local recurrence and bone mets 2008 same ER and PR but tested for HER2 which was negative (they also then tested the previous tissue sample from 2003 and found it HER2-). Move on to 2013 when liver mets were dx and I asked for a biopsy as I knew receptor status could change. This came back as triple positive, which was a surprise to me and my oncologist, so after the Capecitabine I was on stopped being effective I then had docetaxel, H and P, plus a hormone (letrozole). All was stable for about 14-18 months when the largest liver met started to increase in size (everything else was stable or still shrinking in the case of the smaller liver mets, I had about 5 at the time). I asked for another biopsy and was going to start a trial at The Marsden. The biopsy results, which were sent off to an external lab, took forever this time in which time The Marsden also tested the sample in their own lab. We got 2 different results, from the same sample! All very confusing to say the least and during which time my liver met was still growing. I was still hoping to go on a trial based on the Marsden ruling me as HER2- but as my liver met was even bigger by now we eventually decided I should start Eribulin which was shown to work (whereas the trial may not have done). I responded well to Eribulin (8 cycles) which shrunk all liver mets to the extent that only one, the largest showed up on a CT. I started then on exemestane but after 3 cycles a CT scan showed that the liver met had grown again, I then was offered fulvestrant but at the same time a liver resection. The liver resection was done pretty quickly after the consultation and a biopsy done on the main one removed (2 other much smaller ones which only showed up on an MRI were also removed). At my post op consultation I was told that the liver met had in fact come back as triple negative! This explained why it had only shrunk during chemo but grown whenever I was on a hormone treatment, but was a complete curve ball!
Ive only added this full version of my treatments etc just to show how the whole receptor status can be confusing and how BC can change, which obviously alters which treatments are effective or not. I also learnt that HER2 status is not a definitive answer. We all have HER2 receptors but it is the ‘over expression’ of these which determines if we are HER2 + or -. An initial score which is done by ink being taken up by the surface receptors on the tissue sample will indicate a 0,1,2 or 3 score. A 0 is a definite -, a 3 is a definite + but the 1 or 2 should be investigated with a further test which is at DNA level. This is the one that takes longer to get a result for as there’s only a few labs in the country that do it. The score then is from 0 to (I think) 6 with a cut off point of (I think) 2 or 2.5 meaning anything higher than 2/2.5 is deemed + and anything lower is -. When we double checked my HER2 score I was 2.67 so therefore very weakly HER2+ and unlikely to have benefitted from all the HER2 treatments I had had in the past and it would have been the chemo or hormone elements that would have kept me stable. As to how they got that result from my liver biopsies in the first place I don’t know, I just think the whole lesion was a real mishmash which is why I’m glad they have removed it. I always called it my rogue lesion as it didn’t react as all my other mets sites did and I was right, it was rogue. Btw it was always this lesion that was biopsied as it was the largest and easiest to access.
As I said I have only added all this info so anyone can read it, I’m happy to share my knowledge and experience and hope it helps someone else along the way.
well what a crazy ride you have been on with the ( or not) liver met! There doesn’t seem much consistency with the scans. I haven’t had an MRI on mine but the CT said one spot up to 1.76 cm and possibly 2 other faint ones. Ultrasound showed spot was 1.2 cm and said couldn’t see any others but could be cysts as I do have a lot of them on my liver. So I guess I will just have to wait and see.
my bone mets were found Dec 14 and I went straight onto Exemestane which kept me stable 3 and half years.
MRI this year showed progression in spine ( I have bone mets everywhere, spine ribs femur scull). Am starting Faslodex this Wed so I suppose it’s my first Liver met treatment. Will have another list of questions for Onc whenever I see him.
Debs.........it will be interesting to see what 'they' say about your biopsy. Mine is being done to establish whether the liver spot actually is a secondary after all. i say 'after all' because the spot was seen on a ct scan last year, Aug 2017. I was sent for an mri and was told it was definitely a secondary, after 3 and a half stable years of bone mets on letrozole. i had had a small local skin met at the start which led to my sec dx, and it was biopsied. One of two was HER2+ve, so onc said it was now time to try herceptin. That meant docetaxel of course, and perjeta. i am still on h&p. First scan the spot looked smaller, but the second scan in July showed it was growing again. onc now said i was eligible for radiofrequency ablation! he was very cheerful about this. I was referred to the churchill in Oxford, who asked me to have an mri. But their response was different.......they questioned whether it was a secondary after all! onc rather subdued. The Churchill eventually had a meeting and decided that i must have a biopsy to confirm before being considered for ablation.
So........it is rather silly. If it is a met then I will have ablation, which is very similar to the biopsy. if not, then I don't know really. Onc so far has kept me on h&p, even though it didn't seem to be working, mainly because he says if he takes me off it I can never go on it again! i live and learn. i think liver lesions are in fact rather hard to determine. Mine is, at the last scans, 2.5cms on the ct, and 1cm on the mri. Onc says you can't compare them.
So indeed it will be interesting to see what your biopsy shows. it may raise more questions! but certainly if it is HER2+ve then you will have the option of h&p, which i find very easy. How long have you had the bone mets? there might be the option of ablation in your future. You have to have had at least one failed treatment for the liver first. i suppose you could mention it to your onc.
Sorry that was rather long winded! we are all quite different, but it is very useful to compare. That's how we learn. Take care for now. Update us on your biopsy if you have time.
My biopsy was to check if it’s ER positive like my bone mets or if there is HER positivity. Of course I’m still hoping they will say it’s benign but highly unlikely. What’s the reason for your biopsy? Forgive me if you have already told us, I sometimes get confused as to who’s having what done and when 😩
Well done, Nicky! You are on your way with faslodex. And you seem to be fine with fulvestrant ........unintrusive as you put it. All good! I agree with you about onc appointments..........my onc is always smiling and ready to chat, asking how I feel, etc. I am not feeling too well until i know the results of my latest scan! You are right that I think they can't put themselves in our shoes. He is a very nice young man, but I would prefer to leave chatting until the end. And thank you for sharing your biopsy experience..........I have my fingers crossed, but will be glad when it is all over. I'm growing into a bit of a weed!
Thank you as well, Debs, for sharing your experience too. Like me you seem to like to know everything about what's going on. hopefully whoever is doing mine will be happy to explain it all. I never make much of ultrasound pictures.........looks like snow on an old tv screen! But I'm glad it all went so well and you have given me confidence. I have also been told I will stay for at least 4 hours. And I have to have someone with me overnight! A good friend has agreed to stay but I hate having to ask. i prefer to be independent. Ho hum. The M&S choc cheesecake sounds delicious.........I will buy one for me and my friend to share when we get home! I don't know why you had your biopsy, but I hope the results are fine. Keep us updated.
Thanks to you too, Jacksy, for your good wishes. You were also kept for 4 hours you say, but in a way at least it means you were watched with obs etc. I anticiapte being BORED! I would normally never stay in one place for so long.
All the best to everyone, and well done Nicky! All's well that ends well.
Had my biopsy Wednesday all went ok and I didn’t feel any pain. Was kept in for 4 hours and the lesion is 12mm and not deep. Start Faslodex next Wednesday hoping for a good run on it.
Hi Nicky, that’s great news 👍🏼😁🍰 so glad to hear it’s working. Yes I know what you mean about them not telling you the scan results first. That’s happened a few times and frankly I can’t think about anything else until I have that information.
Thats good that you used to see your scans. Mine seem to be stored elsewhere, and they only get the report. I have been shown them once or twice and found it quite reassuring in a way, that what I’m imagining is what’s there, and that they haven’t got the wrong person and are treating me for something I don’t really have! The first time I went through chemo I was very aware I was going through it all just on trust, on their say-so!
when I had my 2nd biopsy I was kept in for hours afterwards, and I was on a trolley in the doctor’s office as there were no beds! You do get sick of them taking obs every five minutes.
Deb all the best for yours, hope it goes smoothly.
i had a CT scan today so I’m waiting a couple of weeks for my results. There was a tiny amount of progression in my peritoneum last time so we will see what’s happening. I’ve been on Kadcyla for two and a half years.
have a good weekend eveyone
I have indeed had my results and it’s good news, faslodex is keeping everything stable, hooray. I can now sleep better as it still gets to me even though I’m used to all these scans and results. I have a new oncologist who I saw yesterday and he started by asking me how I was etc etc, did I have any one pai and all that. I had to say to him ‘I’ve had a scan by the way’ to which he said, ‘Oh, yes, that’s all good’ . Honestly they do not seem to understand that the only thing we need to know at that point is the results, whether they are good or bad, I can answer the other questions afterwards! I’m assuming from what he said there are. Olesions showing in the liver, or elsewhere, but my previous onc used to show me thescan pictures as well as let me read the report so it was all a bit odd yesterday but I’ll know next time to ask as I’m obviously not just going to be shown.
Anyway, I continue with fulvestrant which is good as it is a very unintrusive treatment - in fact I’ve just come back from having the injections along with my Denosumab and port flush - so a full complement of needles today.
Hooe you are no too worried about the biopsy mo maybe they are keeping you in because of the time of the procedure and the fact you are on your own? Each time I have been able to go home after an hour, or 2, of hospital rest and observation.
Good luck ladies, as you say, we are in it together and it helps so much to share our knowledge and experiences.
I too was very nervous about the biopsy but my experience of it was as good as could be expected with no pain at all. Once in the little operation room the nurse talked me through it and took blood pressure temperature and prepared everything chatting to me the whole time. The lovely doctor came in and explained it all again. Me being me I asked him to show me on the screen when he found it which he did. I didn’t feel the numbing injection and he told me I would hear a click sound when he did it and might experience a little sensation run across my tummy. That literally took seconds and it was over I could have kissed him. He said bullseye I got it. He asked if I wanted to see the biopsy in it’s little jar which I did We then talked about treatments etc. He said we are in a time of so many new medications and that I should remain hopeful.
Back on the ward I had to lie flat for 4 hours they took my temperature and blood pressure constantly. I was allowed home after 4 hours. I too live alone but they never asked me. Mo I didn’t even need painkillers and went to work the next day.
Well I thought I would give you the whole experience and hopefully ease your worries. Of course we are all different and maybe it depends where the little Uggers are in the liver but I pray you have the same experience as me. My friend drove me home and treated me to M&S choc cheesecake which I devoured instantly lol.
Good luck dear Mo and let us know how you get on
Nicky and debs..........your posts are very interesting so thank you for sharing. I agree with you, Nicky, that we become experts in our fields! Sometimes I wish I knew a lot less!
I was particularly interested to hear about your experiences with your biopsies, Nicky. Mine is now booked for the 12th and, unusually for me, I am rather nervous! But what can we do? I have been told I must have someone to stay with me overnight and I am lucky to have a good friend who has happily agreed to do it. There must be people who cannot find anyone. I assume they would keep them in the hospital although that was definitely not on offer to me when I said I live alone and might not be able to find anyone. At that point I didn’t know if friends would even be away on a booked holiday or have other commitments. Anyway dear maureen will be there for me.
if you have time and inclination, Nicky, do let us know your scan result. We are always interested, and indeed sympathetic of course. You have travelled a long journey already, but you are well armed and prepared for your next move!
I assume you have had your liver biopsy, debs, and I hope it all went well! We are both in the same boat. I haven't been on the thread for a few days so missed wishing you well. Hopefully the worry for me will be the worst part! All the best too for your faslodex. I have read it is quite a manageable treatment on these threads, but sometimes with a sore bottom for a bit! Havent had it myself of course, so not an expert in that area. But you have nicky. She's amazing.
Love to all,
lol ok will put on my best M&S and not wear my big Bridget Jones comfort pants.
I will also be having my Denosumab at the same time so seems a really easy plan and I hope we both get a long run on it. Good luck with your scan results let us know how you get on. I will report back after Liver Biopsy.
The sore butt is the main one! I’d read, from this forum, about how it can sting etc especially if given too quickly. Sometimes it does sting, sometimes it doesn’t, sometimes the nurses give it really (too?) quickly, other times it’s given slowly so I haven’t noticed any particular link. I would say the day after the area where it has been given feels inflamed and a bit itchy but this passes. It’s given in the top outer quadrant of the buttock so you should be feeling discomfort from sitting. I’ve not had any additional side effects, my menopause was a good few years ago when it was surgically brought on so I don’t get any of the hot flushes, aches and pains associated with hormonal treatments. I’m hoping that is is continuing to work, I’ve been on it 6 months or so and due a scan result this week, as I’ve found it very unintrusive and has given me a lot more freedom away from the hospital. I go every 4 weeks for this injection and my Denosumab, no oncology appointments as the injections have been prescribed up front after each previous scan, just a quick half an hour whilst they fit me in for this. Oh, and the final tip is to wear your best knickers ha ha, it’s rather odd standing there whilst they administer the injections with either your trousers pulled down half way or your skirt hoiked up!
Im also on Faslodex so please ask away if you have any questions about that. Not all hospitals fund it (its currently not available through NICE) but luckily mine started funding it about a month before I was due for a treatment change. I’m very glad they did as it is so nice not to be on one form of chemo or another, which had been the case for the previous few years.
With regards the biopsy I have had 2 different experiences. The first was a bit painful as the local anaesthetic hadn’t quite gone far enough, the second time it had so I was completely numb in the area, I guess it depends on how deep the lesion is that they will biopsy. There is a sensation of it being done but shouldn’t really hurt, I was unlucky the 1st time. It is usually ultrasound guided so the local anaesthetic is given an allowed to work for a few minutes before they do the biopsy. Afterwards you have to lie flat for at least an hour to ensure there’s no bleeding etc from the area. In my case I didn’t have stitches and I don’t think in general they would given them as the entry is a small puncture wound. After another hour or so on the ward I went home, it didn’t drive for a day or 2. You only need something like paracetamol afterwards if you have any residual pain.
Im not sure if what I’ve written helps or not but I hope it gives you an idea of the procedure. You should of course be able to ask the radiologist (or whoever does the biopsy) if you have any questions.
Hi Nicky and Mo,
I saw my new oncologist at the other hospital and he is starting me on Faslodex as I had a good response to Exemestane (3 1/2 years) all hospitals nearer to me don’t fund Faslodex so that’s one reason I wanted to xfer here. My liver biopsy is this Wednesday and I’m getting quite worried about the procedure. Do they numb the area? How long does it take to get a sample once the needle is in? Is it very painful (I know people have different pain thresholds) I remember the biopsy on my breast lump 20 years ago was painful.
oh dear we have to go through so much
Thanks for asking about my scan. I had it a couple of weeks ago but had a holiday booked (precisely so I could enjoy it without thinking about the results!) so I haven’t got my results yet, I should get them next week as I’m now back and I’m obviously hopeful that my current treatment plan will continue.
I understand from both your and Debs posts about the frustration all of the investigative procedures cause. Time drags on when you’re waiting for these to be organised meanwhile, as the patient, you get worried about what is going on inside your body whilst the powers that Be make their decisions. I have ‘been there, done that’ on several occasions. I hope for both of you the biopsy gives you, and your team, the information they need to work out what happens next, sometimes it doesn’t give definitive results - as you mentioned, mo.
The procedure can be uncomfortable (I’ve had 2 over the years) so I hope that for both of you it doesn’t cause any problems. As to seeding etc I hadn’t heard of that but I don’t think that happened with me, no new mets sprung up after either biopsy, or none that would have come from the lesion that was biopsied as that turned out to be a totally different make up of BC cells than the rest of my liver mets.
I agree on the Alice down the rabbit hole scenario! When people say to me that I know a lot about SBC, or more specifically ‘my’ SBC, I say I had to learn about it. I’d rather not be the ‘expert’ that I have become but I owe it to myself and my family to make sure I’m giving myself the best possible survival time.
Good luck to you both
Debs, Just to wish you luck with both your new onc on the 26 th and your biopsy on the 3rd. Oncs are so variable......like our families we can’t choose them! Although you have taken a step in that direction and really you can’t go wrong. You will have a new view on your situation. It will be interesting and almost certainly can’t be worse. Let us know how it goes.
my onc is quite young and very pleasant and inclusive, but he seems to have little say in my ablation or with that team since he referred me. We both await their decisions! I feel I will have to have the biopsy........or withdraw from being considered for ablation. They didn’t give me a choice. I would prefer to ablate it whatever it is! The procedures are very similar and my onc did say he would prefer going straight for ablation. But it seems he has no input with the radiological team who will do it.
We we have fallen down into alice’s Wonderland where everything is crazy and I won’t get used to that. The need to confirm my liver met after a year of treatment was totally unexpected. I had assumed an mri was diagnostic because they based my treatment on it.
Dont apologise about having a rant! It’s exactly what we need, and part of the purpose of these threads. Having a rant a rant helps us to clarify our thoughts and our understanding of where we are in a sympathetic and knowledgeable environment. So rant away!
as you might have noticed it is rather deep in the night. I am often having a cup of tea in the wee hours these days. This iPad is new but comes into its own at 3am! My friend lent me hers during my chemo and I became a convert. Take care debs, and all the best with the new onc and hopefully a whole new attitude,
Hello Mo, such a dilemma and I didn’t realise about the fact a “met” could be “not a met” when it is in fact “a met with normal cells taken” also what is seeding?
I think this whole stage 4 malarkey is designed to send us all doolally!
I have been trying to get my liver biopsy arranged, I gave the dates that I would be unable to have it done. I was away on holiday for a week which Ive looked forward to all year so unavailable then. So obviously the appointment came through for that week!!! I am seeing my new oncologist at a new hospital 26th Sep so that dates out. When did the appointment come for? Yes the 26th Sep..... is it me????
So I now have the biopsy booked for wed 3rd Oct. The CT scan showed one small spot then the same scan came out of the MDT meeting stating 3 spots!!
I think I’m having the biopsy to see if the hormone status has changed, my oncologist said it’s definately mets...can she be so sure without further imaging/biopsy? Her glass is always empty with not a drop left I’m hoping my new Onc at least has a sense of being able to keep m going. I’m a glass very full person but this is really testing me.
Thanks for letting me rant Mo and I hope you decide what to do for the best “ to biopsy or not to biopsy”
Hello! Hope this finds everyone well. I am just updating, as I said I would. Did I say that my onc reported some weeks ago that the radiologist at the churchill was actually uncertain that my liver spot was in fact a met! Could be something benign, after all the chemo, herceptin, perjeta, etc, over the last year. i wasn't expecting that. This meant that I was then waiting to see if they wanted to confirm that with a PET scan........radioactive!......or a biopsy, or go ahead whatever it is, or do nothing. There was an upcoming meeting of radiologist + liver surgeons but I was told the radiologist didn't turn up to the first meeting, so no conclusion.......everyone turned up to the 3rd meeting, every fortnight, last Friday. My onc phoned to say the decision is to have a biopsy to confirm what it is. The odd thing is that this is only 100% if they find it IS a met. If the biopsy says no, that is not in fact 100%. Just very likely benign. Strange really, so that i am now wondering what to hope for. Perhaps it might be best to hope it is cancer......after all that is what i have thought for the last year!.......... which will be a 100% certain result, with ablation next. If they say it isn't, that is not 100%.........there are normal cells mixed into such tumours.........it all depends on what is taken in the biopsy........if they say it is benign, then no ablation, which may prove wrong in the longer term.
Strange world. My onc preferred just going for the ablation whatever it is and I tend to agree now. But I have no say of course, nor my onc, except to simply say I don't want the biopsy, which would mean I can't go on to the ablation. Cornered.
I have also read that biopsy of the liver can cause seeding, which doesn't happen with ablation because the needle cauterises itself on exit with ablation. Onc says very rare........but if it happens to oneself it isn't rare.
anyway, thought I'd just update, and indicate the confused world we have fallen into. My onc said that of course nothing is ever certain in medicine. He's right, but then there are decisions to be made, and as patients we aren't always included in that.
So that's where I am and thought I'd share. it also helps me to think it through! i now await a letter to give me a date, and details of the proceedure. i'll get back when it is done, which may be a few weeks off.
hope anyone reading this is well. Have you had a ct scan lately Nicky? You did mention that a scan was in your future to check your liver mets. If you had it I hope the result was GOOD! Take care everyone!
Hello Nicky and jacksy and thanks for your support. As usual these situations seem not to be so unusual as I see neither of you has had a straightforward journey.........like me. I particularly noticed you, Nicky, saying that your liver had progressed too far as you waited for the meetings to make a decision on rfa. That was exactly what I said to my onc at my last appt. I said I was worried the spot would have grown beyond the restricted size during the waiting time. He looked over his shoulder at his screen and the latest mri.........’it’s still 1cm’ he said, smiling. My eyebrows lifted. Well then, it has shrunk? He looked again at the ct result........2.5cms. Hm. Well........you can’t compare them........ct & mri. Personally I thought you could, but didn’t say so. No point. The whole thing seems surprisingly vague at times. And of course slow, remembering they are dealing with often aggressive cancers. But if mine really is still 1cm then I might be lucky.
However nicky, you did get a fast response to have the resection! Good! Best wishes for your next scan. Let us know.
Jacksy...........I’m in there holding my nerve as you advised! It’s good advice. I have a garden to cut back, so throwing myself into that!
Anyway, thank you both again for your comments...........useful not just for me but for any readers who might pop in here with similar problems. Sharing always good. I will post again when/if I hear more.
I have a good friend recently diagnosed with liver mets.......4 spots..........she was hoping for rfa. But she is now on carboplatin. My hope is it will reduce her spots to put her in a position for rfa in the future. At the moment I think 4 spots are too many.
Take care. Lots of love.............mo ............x
How annoying mo, I don’t think these professionals understand how frustrating it is to be in a position of continually waiting for them to make a decision. I was in the same place a year or so ago when ablation/RFA was first mentioned to me. By the time they got around to getting all the scans done and results checked things had moved on too much so I ended up having chemo instead, I really hope this doesn’t happen to you. On a more positive note when the question was raised again earlier this year it was a much speedier process and I was on the operating table before I could blink (well, almost!), in fact my oncologist warned me that if I agreed to discuss surgery with the surgical team they would almost definitely agree to the op and get it done really quickly so I had to be absolutely sure I wanted it done. Luckily the chemo from the previous year had knocked back all the mets and the only one which was increasing at that point was the one they were removing, although they did a quick tidy up of 2 tiny ones at the same time. Just coming around to the next set of scans to check the current treatment is working and the liver mets arent back to partying.
Oh dear Mo, sorry to hear you’re still waiting for an answer! This was exactly my experience all those years ago. They’d say there’s a meeting on such & such a day and you will have a response after that, then the meeting would come and go and they wouldn’t have discussed my case, or some key person wasn’t there, or the meeting didn’t happen. Then it would be another week or fortnight till you got your hopes up again. I’m so sorry, the waiting is pants. Just try to hold your nerve and keep busy with other stuff if you can, to make the time pass. Rubbish advice but it’s all I’ve got 😕
hope you’re having a good weekend and doing some nice things xxx
I’m just bumping up here. I am still in limbo re my ablation. The radiologist was apparently absent from the meeting last week to discuss my position, so I am waiting for their next meeting.............possibly next week. I hope everyone is at that meeting! But until that decision is made I have nothing to add at the moment.
love to all, mo. xxxx
Hi again ladies,
yes, they give the impression that all these tests and scans are conclusive, but actually there’s a lot of variables and interpretation involved. It’s a bit depressing. A friend of mine with bc was told she had brain mets, she had just begun to get her head around that information, then in the letter to her GP they said they weren't sure if it was mets at all!
Anyway, Mo, yes I do remember there were a lot of hoops to jump through before my first ablation, and that led to a lot of delays and waiting for different specialists to meet and discuss. Once I was in the system though it was easier to go back for more.
one thing to bear in mind is that our docs are mostly medical oncologists, which means they only specialise in chemo and other drug treatments. They may not be aware of other options such as surgery, RFA, HIPEC etc. So it’s worth doing your own research to see what else is available. That’s where sites like this are so helpful.
Well I hope those that are waiting for news don’t have to wait too long, and that the diagnoses are clear and decisions are explained clearly to you. You have every right to ask as many questions as you need to, it is part of their clinical responsibility to gain your informed consent, which means you have to be satisfied that you understand what is being proposed. Don’t ever feel a nuisance.
all the best
Hello Deb I’m also Deb lol
yes we are similar, I’ve been ok on Exemestane and it kept all my bone mets stable for 3 and half years which I believe is fairly good going so hope it works as well for you.
I most likely have liver mets too now although can they be certain on a CT scan only? You can read my history on previous message to Mo that I’m waiting for a referral to another hospital but in the meantime not on any meds that are working for me which makes me nervous.
Are you recovering it ok from your surgery?
Thanks so much for your reply,
We both seen very proactive and would like to keep in touch. I probably do too much research but it’s the only way I can feel in control. I took my eye off the ball as I was stable on Exemestane, but I was only offered an MRI every 12months and I believe now I should have asked ( demanded?) more. My mri scan August 17 was stable my mri July 18 was progression hence CT scan and now liver involvement. Somewhere in that 12 months there was activity and maybe a scan in between... say at 6 months might have caught the progression quicker. I believe my NHS trust are badly funded and all my Onc comes up with is chemo chemo chemo because I know that’s all she has access to. I email other hospitals oncology departments and ask for their opinions and this is how I have come to ask for a permanent referral to another NHS trust about an hours drive away. They opened a new cancer unit 3 years ago and I feel I might have more options with treatment scans etc ... 🤞
Like you I take friends with me and between us we then chew on the news over coffee ☕️ or wine 🍷 and decide on the next plan of action.
So today I think they will be deciding if they can biopsy or not, I’m waiting for the referral, and am still taking Exemestane which as we know hasn’t worked for at least 6 months so I’m not in the best of places especially as I’m supposed to be going on Holls In ten days time.
Mo, if I could go back 25 years knowing what I do now I would have taken out a top of the range private Insurance. When I had my primary 1999 I couldn’t fault the NHS but I feel it’s very very different now.
Hello, mermaid. I can’t quite remember what I have already said here, but I agree that it all seems rather vague. Last year when my spot appeared on a ct scan my onc sent me for an mri to confirm it was a met. It had to be more than 1cm. Now it seems an mri is not fully conclusive after all. In fact nor is a pet scan as it shows active cells.....cancer.......glowing, but Iiver cells are active for many reasons, according to my onc. Thats why I may have a biopsy which is more or less certain either way. But it is rather silly because a biopsy is almost the same as having ablation so as my onc says why not just go ahead, whatever the blighter is? There is a lot of opinion, and the meeting tomorrow will involve a lot of opinion I’m sure, when they decide on my several options.
i think you have done the right thing to be referred to another hospital. Would that be permanent or for a second opinion? You need to trust your onc, and oncologists have a responsibility to tell all. I trust mine and he is very relaxed about sharing info, but the actual limits of the whole thing is beginning to dawn on me. I feel I should have had a biopsy last year when the spot on my liver first appeared, otherwise I might have been on all this treatment.......docetaxel then h&p......for nothing over the past year. Such a waste if the spot is shown to be benign, but of course I can’t be sure what it is yet! I didn’t dream that the mri could be inconclusive. I think they just weigh up the possibilities. Tomorrow at the Churchill meeting they will be weighing up everything.........liver surgeons will be trying to use their experience of seeing other similar things. All rather vague. Knowing what I know now I should have asked about a biopsy Last year. Too late now. We just have to ride this learning curve.
Like me it sounds aas though you have been stable until the liver spot, which is a requirement to be even considered for this ablation. Your spots have been both one and later three! Mine has been 2cms, but only 1 cm now on mri! My friend comes with me to take notes, but we both have to go away and review what has been said to realise what’s actually going on! eg........did he really say that? Yes, I’ve written it down.
Anyway, thank you for sharing your experience. We are rowing a strange boat and must be constantly alert and ready to comment and give our own opinions. As you said, it’s our bodies they are mulling over here! Without our bodies they wouldn’t have jobs!
better think about bed.........I hope your current situation resolves before long. Do keep us posted here if you can find the time. I am always interested in others’ experiences. And I think we all learn from sharing. And don’t worry about having a rant! That’s what these threads are for!
Hello Red Riding Hood,
we seem to have a similar scenario going on...
my primary 1999 then bone mets 2014 been stable on Exemestane till last MRI July showed progression and worse still CT showed liver involvement. I have a decent relationship with Onc secretary and she read the CT report which said small spot to liver. Saw Onc this week had been to the MDT meeting and said 3 spots... largest 1.6cm others faint !!!! How did it go from 1 to 3 from same scan? She is going to ask if they can biopsy.... why didn’t she ask this at MDT? Can they be 100% it’s mets? Back in 1999 ny first ever CT scan showed a mass on my liver... too dense to be a cyst. Went for biopsy and it was a cyst!!!
I know as I’ve now got secondaries to bone it’s probably mets. I’m still on the Exemestane as Ive asked for referral to another hospital ( better postcode) it has a cancer unit and I’m hoping for an Onc who gives me more info. I feel I annoy my current one with so many questions and she gives so little away, it’s like “ why do you need to know that” sort of attitude..... because it’s my freaking body that’s why!!! Sorry for rant.
I’m interested in cyber knife which is at another nearby hospital but understand need to be stable again first.
Jacksy.........thank you for your good wishes. Unfortunately my onc had no answers on Tuesday. There will be meeting of radiologists and liver surgeons on Friday to decide what to do. Apparently the mri showed the spot to be 1cm not the 2 shown in the ct scan. Has it shrunk? But he said you can’t really compare them. My onc says that there are several possibilities after talking to the radiologist who would do the ablation at Oxford. I might need to have a pet scan because there are other tiny dots which might be mets too. But also there are even doubts that the main spot is actually a met after all. So there might be a biopsy to be sure........but onc thinks if they do that they might as well do the ablation, whatever it is! Both involve a day surgery with probe. They may say just do it with no further tests, or abandon it altogether (that sounds like my pessimistic onc again). So I am still in limbo, just more complicated than before. This whole metastatic thing is not actually very clear despite all the tests and investigations which seem to pile more questions in a heap!
i am getting used to just waiting......and waiting. So I might know more after Friday, although how the decisions will be conveyed I have no idea! I will, out of interest, post any conclusion here. Did you have such a convoluted start to your first ablation? It seems that getting past the first hurdle is the problem, and then the follow up is more natural.
Thanks again for for your interest, and for sharing your experience. You are doing so very well! There definitely are treatments out there to be tried. I’m certainly learning about the ablation situation and hopefully anyone coming to this thread will also be learning from what we share. All the best for now, jacksy,
Yes I feel so blessed to have done so well for so long.
What a terrible combination - being a pessimist AND an oncologist! You could do without that to contend with. I really hope your results on Tuesday show you are good to go for the RFA. It definitely bought me a good chunk of time and it’s good it can be repeated any time it grows back. All the best - the waiting is the worst
Hello, jacksy. Thank you for your post! You have done so very well that you have given me confidence. Ablation certainly does sound like a good option and I’m hoping to pass the last test.......the mri I had last week. I see my onc on Tuesday and he may have heard from the radiology dept. My onc is always a bit pessimistic and muttered that liver mets are difficult to control systemically so I am pinning my hopes on ablation. And also interesting that you had it 3 times. I have read that it can be done again, once you have had the first. It gave you a good amount of time before going for the resection, which I understand can be very successful too. Basically the ablation kept it under control for a long time until finally having the resection. It was all well planned, and I can only hope to have such a good outcome. Time will tell.
You have had had good success with kadcyla too. Well done, jacksy! You have hung in there with excellent results. What a good example for us all to follow. Thanks again for posting and sharing your experience,
Hi red riding hood and Nicky,
nicky Im glad to hear you seem to be recovering well from your surgery. I had liver ablation in Dec 2012 and nothing has returned in my liver yet. Red riding hood I just wanted to say hi and reassure you that ablation was very simple and trouble free for me. I had it 3 times, I think, before I had the resection. Each time it killed off the tumour and nothing returned for at least a year. I know they hadn’t managed to zap it all as it was very close to a vein.
im now 11 years since I was diagnosed with liver secondaries, so I hope that gives people some hope and reassurance. It has now spread to my peritoneum and probably ovaries, so I’ve been on Kadcyla for two and a half years now.
Best wishes to you all and hang in there
Thanks for your post Nicky. I am having the mri wed, and I will post back if I progress. It is good when we can share our knowledge and experiences as it spreads confidence, and also makes us better patients! I think the more we know the better. I don’t usually have much of interest lately to share, but this liver situation is not uncommon and I hope just putting my situation out here might be useful to someone, who might be in the same boat, or might raise it with their onc. That s the real value of this bcc forum. After what you said I am hoping the mri is routine prior to an appointment........a step closer. But I’ll post what happens next for info. As can happen my single met might have grown too far, or been joined by more. We’ll see.
all the best to anyone visiting this thread,
Hi Sarah (and mo)
As mo has said treatments such as ablation and surgery can be performed as long as your liver met/s meet the criteria and, as far as I am aware, you have shown a period of stability on the systemic treatment you are on. I was going to have RFA last year (or possibly the year before, I can't remember which!) but my largest liver met had just gone beyond the outer most limits where they can do it. I then started on a chemo regime last year and this reduced my liver mets to only one being visble on a CT scan and 2 tiny ones showing up on an MRI. I had surgery earlier this year and have been reminded by this thread that ablation may be an option as and when new ones grow (as I'm sure they will). I am lucky that I have an excellent radiology department who can carry out thescans/biopsies and ablation as well as a top class sugeon (and his team) who can perform surgery so I have not had to look at private health options. I am not sure how you might get a referral to the NHS hospital I am treated at but I do know they accept patients from all over the country for this type operation.
mo - good luck with the MRI, I understand its pretty routine to have an MRI before the procedure is confirmed just so they do know exactly what they are dealing with. After I'd had the initial MRI earlier this year I got a follow up appointment fairly quickly and surgery date only a week or so after that. I had some further MRIs (pre and post surgery) as I took part in a research study but otherwise it was just the initial one that gave them the information they needed. This was also the case when we were looking at ablation and that was when the main/large lesion was shown to have got too big for RFA.
Have just found this thread........I usually follow the bone thread. I have bone mets in5 places that have been stable since sec dx almost 4 years ago. Primary in 2001. Letrozole kept me stable. My liver met appeared last aug 2017 and my onc started me on docetaxel with her and perjeta because I had one her2 pos result from biopsy of local skin met that hasn’t returned. I had only 3 rounds of docetaxel because of being allergic and continue with h&p. The liver met shrank initially........probably the chemo.........but started growing again when only on h& p. Onc is keeping me on it though as it may contribute to stability and once off it you can never return. I was disappointed of course, but onc referred me for ablation which I then knew nothing about.
There are, as Nicky says, various parameters for being considered. I don’t know them all but I do know that I had to be stable otherwise........bones haven’t changed at all since discovered..........and the liver met must be small..........certainly smaller than 5 cms...........mine is 2 and a half. One met is best, but they will consider 2 I think. Multiple probably not. Also I understand that you must have tried out some other treatment for it, like a chemo. I had the docetaxel and h&p, and it didn’t work. My onc was quite chirpy telling me all this as I gazed out the window! He hasn’t referred anyone for radio frequency before, but he is quite young.
I waited for 3 weeks from referral then onc rang to say they...........I will have it done is accepted at the Churchill in Oxford where my onc comes from...........they have asked me to have an mri, which is now booked for next week, the 22nd. He said they will be looking for any other mets ‘lurking’, although I talked to a Macmillan nurse on their phone line who said in her opinion an mri would be routine before treatment. But still I have not been accepted yet in my mind. I won’t be happy until I have a date!
The macmillan line could be useful for info. The nurse I talked to........you would be put through to her if liver ablation mentioned.......if you ask.........has worked with radio frequency ablation patients at Glasgow so she is very informed and experienced. Worth talking to her. She gave me confidence.
so, as is common in this boat we are sailing, I am waiting and in limbo. I have been referred........it is done at the radiology/ X-ray dept at the Churchill, but not done everywhere. You might have to travel. But I know they will look carefully at the mri..........they look at where it is, what it is near, etc. Can’t be too near portal vein, heart, etc. So probably another couple of weeks until I know for sure that it will go ahead. The nurse said it has an 89% success rate which sounds fine. Once you drop on this treatment you are followed up and can have it again. It sounds as though even resection could be i the future if it doesn’t work, although it is obviously worth a try first. Even resectionhas its parameters, the same as ablation my onc said. A friend of mine knows someone who has had liver ablation and it didn’t return.
Sorry this is so long, but thought I’d share what little I know. And you have to put your own treatment into context, hence the long history bit! I am always grateful to read others experiences and my antennae pricked up when I saw this thread! I don’t often browse the threads. As I said I usually visit the bone thread, mainly to read. All the best to whoever is reading this. I will post again if I move further along this treatment route.
I have been diagnosed this week with secondary to the liver and whilst I have been given a treatment plan I am keen to explore all options.
it might be eorth you looking at a Prof Peter Lodge who works privately at aspire but also al St James, Leeds it seems that he is very forward thinking and has carried out surgeries on people who had been told they were in operable.
I have also been advised to research low dose naltrexone which may be beneficial.
Honestly I’m not stalking you! However I’ve seen from your post you are booked in for liver resection and worried about it, probably the recovery time etc.
Just an update from me, I’m now 4 weeks post op and given a clean bill of health from the surgeon yesterday. All my bloods have recovered and one of them is showing that the liver is regenerating so in that perspective all is good.
My experience was that the 24 hours in HDU (intensive care/high dependency unit) was absolutely fine, well looked after, not in pain and this level of care seems to be the norm for this type of operation. I continued to have great care once I was on the post surgical ward, all IVpainkillers worked well and I had a top up button I could press for extra pain relief should I need it - self administered so no need to call the nurses. I was also given paracetamol so whilst in hospital I felt pain was completely under control. You will have a catheter but this was a bit of a god send as you wouldn’t feel like walking to the loo on day 1, once it’s out you do need to walk! But walking and moving are key to recovery so most hospitals will get you out and into a chair, or walk to the loo, pretty quickly. The only bit I think I would have changed about my recovery in hospital would have been in there longer to transition from IV pain relief to self administered tablets. I came out in Day 4, day 1being the operation day (!) but from what I’ve seen on here, and on other sites, it seems that 6 days is normal. I was sent home early because I was recovering well and I live fairly close to the hospital. Once at home I found taking all the pain relief I could really helped as, in most cases keeping on top of pain is the best way rather than waiting to see if you need pain relief. I just had paracetamol and ibuprofen but in hindsight could have taken something stronger for the first week or so out of hospital. I set myself 2 weeks to do nothing at all, 1st week in hospital then at home for the second. You will be tired so don’t expect to do anything much at all except sleep and rest. After that I gradually did more, a few short walks outside etc. I’m now able to walk and drive most places I would have done before the op.
I think the key is to listen to your body and don’t overdo it, rest when you need to and get everybody else to do the chores you would normally do. Don’t get me wrong, it is a big operation but presumably, like me, your oncology team feel it’s the right thing to do. For me this was backed up yesterday when I found out that the large lesion they had removed was completely different from my primary, and my bone mets, so no wonder it was not responding well to treatments and would have continued to grow. This has made me glad I went ahead with the operation despite the discomfort afterwards - which I have found improves sometimes from one day to another, particularly after the first couple of weeks.
Thank you so much for responding. Really useful to hear your experience and glad to hear that scans have been clear since and you are doing well.
I had a liver resection in December 2015 at the QE in Birmingham. Was offered as I had one liver met that remained stable for over 12 months, and no other mets. In hospital for 6 days, 1st night in intensive care. Off work for 12 weeks, now fully recovered. Scans since have been clear and I'm doing well. Feel free to ask anything about it.