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,