30-08-2018 10:43 PM
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!
30-08-2018 10:02 AM
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.
30-08-2018 12:17 AM
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,
26-08-2018 05:10 PM
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
25-08-2018 09:03 PM
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,
24-08-2018 04:51 PM
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
20-08-2018 12:40 PM
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,
20-08-2018 12:24 PM
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.
18-08-2018 10:24 AM
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.
18-08-2018 08:32 AM
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.
09-05-2018 10:59 AM
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.
09-05-2018 09:36 AM
23-10-2016 11:03 PM
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.
14-08-2016 10:09 PM
Sorry I've only just seen this. Ive had both ablation and resection. Ablation is much quicker to get over, less invasive, but potentially less of a permanent solution. I had it twice, and it recurred twice. I then had a resection at the end of 2012 and have been clear so far since then. There are guidelines about the number and size of lesions, as well as where else you have secondaries etc, for ablation.
When I went for a resection the surgeon was quite confident that he would take a bigger margin and that it would be more successful than ablation. I went to the Royal Free in London. I was off work for several months (6 I think) as its major surgery, and I spent the first 24 hours in intensive care. The ablation needed a brief general anaesthetic and I was up and about soon after, and back at work a few days later. That was done at UCLH.
I hope this is helpful. They first found I had liver secondaries in 2007, and my liver is now NED (it's other bits of me that are the focus just now), so take heart. I hope your current treatment is really successful
10-08-2016 03:24 PM
Sorry youve not had many replies but this an area of treatment that doesnt seem to be offered to many SBC ladies with liver mets, therefore there's not many ladies who could reply and add their experiences. As has been said it does depend on how the mets are distributed, tiny ones wouldnt be treated in this way and I guess if you have too many larger ones they may also not be treated this way. Maybe you can ask your local team if its something they are able to carry out and therefore advise on or if not ask for a second opinion at one of the major Cancer centres such as The Marsedn or The Christie (or others) depending on where you live? Good luck though with your ongoing treatment.
09-08-2016 07:29 PM
08-08-2016 03:44 PM
Welcome to the Forum but I am sorry that you find yourself here.
Our users are very supportive and I am sure they will be along soon to share their experiences.
In the meantime you can always call our helpline on 0808 800 6000 who will be able to talk you through any questions you may have. The opening hours are below.
Late opening Wednesday 9am-7pm
06-08-2016 02:01 PM
First time posting on the forum. I was diagnosed last March with liver mets and over the year have read a number of the liver posts which have been extremely helpful and comforting.
I am currently looking into Ablation and Liver Resection as my Oncologist says that this might be an option for me in the future. Does anyone have any recent experience of either route that they would be willing to share with me?