05-10-2018 12:27 PM
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.
05-10-2018 12:17 PM
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
05-10-2018 10:04 AM
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,
02-10-2018 09:44 AM
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.
02-10-2018 07:27 AM
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!
01-10-2018 09:18 AM
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.
30-09-2018 09:55 PM
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
30-09-2018 09:00 AM
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
25-09-2018 02:25 AM
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,
23-09-2018 10:23 PM
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”
23-09-2018 01:56 PM
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!
10-09-2018 10:26 AM
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
10-09-2018 08:40 AM
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.
08-09-2018 04:56 PM
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
08-09-2018 02:20 PM
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
31-08-2018 06:22 PM
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
31-08-2018 04:42 PM
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?
31-08-2018 12:49 PM
31-08-2018 12:30 PM
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.