18-10-2018 11:44 AM
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.
18-10-2018 07:52 AM
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.
17-10-2018 10:38 AM
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,
16-10-2018 11:14 PM
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
16-10-2018 06:16 PM
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.
15-10-2018 10:41 AM
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.
15-10-2018 10:04 AM
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.
14-10-2018 05:06 PM
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.
09-10-2018 09:23 AM
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.
09-10-2018 08:23 AM
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.
09-10-2018 08:05 AM
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.
08-10-2018 07:36 PM
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.
08-10-2018 06:55 PM
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.
07-10-2018 12:17 AM
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 😩
06-10-2018 05:16 PM
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.
05-10-2018 11:09 PM
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.
05-10-2018 05:39 PM
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