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Finding a new 'normal' after liver resection

24 REPLIES 24
Jacksy
Member

Re: Finding a new 'normal' after liver resection

Hi Kelliebear,

I don’t tend to come on the forums much when things are going well....(I try to forget!) so it was a surprise to come on and see you had posted just this week. It all sounds very confusing for you, with different people saying different things. It’s good you have an appointment with your own oncologist, who knows you best, to get some clarity. Write down all your questions beforehand and take someone with you if you’re allowed to. I often lose the plot once I get in there, so I try to take notes. That slows things down (they can wait) and allows me to think.

i had my liver resection in 2012 and have had no recurrence in my liver since then. I have been on herceptin all the time since then, and on Kadcyla for four years since my peritoneal mets were found. I would agree with Nicky that in the vast majority of cases once you have secondary BC there are other ‘seeds’ elsewhere in the body, so it is unlikely you would have no recurrence of BC elsewhere. And they can’t always see everything that’s there in the liver, although they have a jolly good look and remove a good wide area to be on the safe side. So I don’t think a resection can be considered a cure. However, as time goes on (and there are always new treatments becoming available), more women are living for many years with a good quality of life with SBC. 
I wish you well in your recovery and really hope it goes well with the oncologist and you get some clear answers

take care now

Jx

 

kelliebear
Member

Re: Finding a new 'normal' after liver resection

Thank you for your message. I am sorry to read your cancer came back.  what a terrifying experience we are all going through. I contacted my GP yesterday regarding my depression and not sleeping. my GP said they would like to deal with my Sleeping problem first before my depression and anxiety 

 

 

 

nicky08
Community Champion

Re: Finding a new 'normal' after liver resection

Hi

I has a liver resection in 2018 where all my VISIBLE lesions were removed. That is not to say that all my actual lesions were removed and I am sure there would have been microscopic particles/seeds already there that could not be seen on the MRI I had done before and after the operation. I know for some ladies, Jacksy comes to mind, did have complete success with her liver resection however I do know from posts on here she has subsequently had other mets develop. For me I had a year of No Evidence of Disease whilst on Fulvestrant after the operation but my liver mets did come back and I needed to have further treatment such as chemo to stop them growing. I think it is unhelpful to say that this operation will cure you, there is no cure as yet for stage 4 breast cancer, however I agree it can extend your life expectancy- possibly for many years beyond what you were told when originally diagnosed. You will always need to be on treatment that is appropriate to your receptor status so you should be put back on that once you have recovered from the operation. If you had been on chemo (you didn’t say which treatment was stopped) you have to come off it beforehand and stay off it for several weeks after as the operation plays havoc with your liver function tests plus your immune system needs to recover. The lesion/s they removed will be checked for receptor status (I assume) in case they are different so I think they mean that rather than staging the cancer. Mine was different, it was triple negative whereas I’ve always been hormone positive. The other thing they probably do check is to make sure it is breast cancer cells in the liver, not liver cancer cells, so maybe that’s what your oncologist meant about staging.
As to recover it took me weeks to get over the pain and at times I wondered why I’d had the operation. However after a few weeks and the pain diminished I did feel great, I wasn’t on any type of chemo for the first time in years, had so much more energy and had an absolute blast of a year enjoying all sorts of things due to higher energy levels and a general feeling of wellness so it was worth it in the end, and hope  will be for you. 
So, I would speak with your oncologist as you’ve said you are having an appointment and find out what they say about follow on treatment, etc and what was found from the biopsy. I would also think you would be seeing your surgeon about 2-4 weeks (maybe 6 weeks, I can’t remember) after the operation to see how you are recovering.
Hope this helps and gives another perspective. I have been on these boards for many years, having had bone mets for over 13 and liver mets for the past 7 years. I have read many posts from ladies with liver mets, especially Jacksy, and I’ve asked lots of questions like you are. 

nicky x

Tili
Member

Re: Finding a new 'normal' after liver resection

Dear Kelliebear,

So sad to read your post this morning, I can’t give you any advise as I don’t know anything about liver resection, however would like to wish you well and a very big hug, as I always say one day at a time. When you see you consultant, take your time and write down a few notes, this is all about you, don’t worry if you need to asked the question twice.

GOOD LUCK, keep us all posted love Tili x

kelliebear
Member

Re: Finding a new 'normal' after liver resection

before I had liver operation I was advised the treatment was working and my cancer had shrunk from 5cm to 3.1cm the surgeon advised that he has known people to still be here 10 years later without cancer coming back but said he is not god and could not say how long I would have to live but this operation would give me the best chance.

I was then taken into another room where I had to sign for cancer research to take my cancer after the operation  and the cancer research lady said the operation I was about to have is a virtual cure.

I was shocked with what she had said as I was advised by my oncologist that I had probably 2 years to live and the longest they have known anyone to live with my type of cancer was 4 years and now I was being told that this is a cure. 

I asked was she sure and was told that it is not documented and I would not find it in any journals but it is a virtual cure not for everyone but this is the best thing out there for a cure  and said again this is a cure.

 

I could not believe what I was hearing. I had the operation on 15th Sep 2020 and still recovering and in a bad way in a lot of pain and discomfort and coldness throughout my body and my fingertips are ice cold 

 

after the operation whilst I was still in hospital the surgeon come to see me as I was in a bad way after the operation and said he was very pleased with the way the operation went and he said statically I would have a better chance now and statically 5 years now to live.

I was left confused with this as was advised that the operation would be a cure and now being told that I may have a bit longer to live and may live 5 years instead of two years but what happened to the cure

I was told. when I got released from hospital a week later I spoke to my oncologist who was shocked to learn that the hospital stopped all my treatment 3 weeks prior to operation and when I told her what cancer researched said about the operation being a cure. I could tell by the way she acted and sounded that this was not the case.

the oncologist said she has been chasing the hospital each day to get the staging of the cancer that was removed. 

this confused me even more as knew I had stage 4 cancer that had been removed and now I am told they need to find the staging of the cancer itself and then they would contact me regarding this

and now I have received a letter advising that the oncologist want to see me in the hospital next week to talk to me to discuss.

I am left again shaken and scared and very confused with it all. has anyone else had a liver resection ? any advise would be very much appreciated as i am very confused and scared.

kelliebear
Member

been told liver resection is a cure

before I had liver operation I was advised the treatment was working and my cancer had shrunk from 5cm to 3.1cm the surgeon advised that he has known people to still be here 10 years later without cancer coming back but said he is not god and could not say how long I would have to live but this operation would give me the best chance.

I was then taken into another room where I had to sign for cancer research to take my cancer after the operation  and the cancer research lady said the operation I was about to have is a virtual cure.

I was shocked with what she had said as I was advised by my oncologist that I had probably 2 years to live and the longest they have known anyone to live with my type of cancer was 4 years and now I was being told that this is a cure. 

I asked was she sure and was told that it is not documented and I would not find it in any journals but it is a virtual cure not for everyone but this is the best thing out there for a cure  and said again this is a cure.

 

I could not believe what I was hearing. I had the operation on 15th Sep 2020 and still recovering and in a bad way in a lot of pain and discomfort and coldness throughout my body and my fingertips are ice cold 

 

after the operation whilst I was still in hospital the surgeon come to see me as I was in a bad way after the operation and said he was very pleased with the way the operation went and he said statically I would have a better chance now and statically 5 years now to live.

I was left confused with this as was advised that the operation would be a cure and now being told that I may have a bit longer to live and may live 5 years instead of two years but what happened to the cure

I was told. when I got released from hospital a week later I spoke to my oncologist who was shocked to learn that the hospital stopped all my treatment 3 weeks prior to operation and when I told her what cancer researched said about the operation being a cure. I could tell by the way she acted and sounded that this was not the case.

the oncologist said she has been chasing the hospital each day to get the staging of the cancer that was removed. 

this confused me even more as knew I had stage 4 cancer that had been removed and now I am told they need to find the staging of the cancer itself and then they would contact me regarding this

and now I have received a letter advising that the oncologist want to see me in the hospital next week to talk to me to discuss.

I am left again shaken and scared and very confused with it all. has anyone else had a liver resection ? any advise would be very much appreciated as i am very confused and scared.

Jacksy
Member

Re: Finding a new 'normal' after liver resection

Hi Deb,

lim doing well thanks. It’s a while since I wrote that post! I’ve had no recurrence in my liver, but some nasties have popped up in my peritoneum and ovaries.ive been on Kadcyla for a couple of years which is keeping things steady. 

It sounds like you’re having a liver resection very soon?! Don’t worry, it’s not as bad as it sounds, so long as you give yourself time to recover and get help with the household stuff for a bit. I didn’t find the pain too bad. In hospital I was very aware when the pain relief was wearing off and I needed the next dose, but once home I just took cocodamol etc and that was enough. 

Relax and let people spoil you. The anticipation is the worst....

all the best

Jxx

nicky08
Community Champion

Re: Finding a new 'normal' after liver resection

Hi Deb

This was quite an old thread (from 2013 if you look at the date of the last posting before yours) so I’m not sure how many replies you will get from the ladies that posted back them. Some, sadly, are no longer with us although I do believe that Jacksy has posted much more recently than this thread. There is another thread which I’ve updated recently about my recent resection but I’ve not checked it this morning to see if you’ve posted on that. Feel free to PM (private message) me about my experience, I’ll help if I can.

Nicky x

DebHummingbird
Member

Re: Finding a new 'normal' after liver resection

How are you? X
DebHummingbird
Member

Re: Finding a new 'normal' after liver resection

How are you now Jacksy? I'm awaiting liver resection !?!? Sending cyber hugs x
DebHummingbird
Member

Re: Finding a new 'normal' after liver resection

I'm due to have a liver resection but I'm very worried Are you any better??
belinda
Member

Re: Finding a new 'normal' after liver resection

Hi again, good to hear you're seeing someone different. Good luck with your appointment.x
Guest user
Not applicable

Re: Finding a new 'normal' after liver resection

thank you Belinda, I am going to broach the subject again with my consultant, the same hospital but a different consultant, so will see what she says when I go back in August xx
belinda
Member

Re: Finding a new 'normal' after liver resection

Good Luck with your CT results Val. I had IV chemo recently, Capecitabine stopped working last autumn. For the first time I've lost my hair, hoping I can now get a good break before whatever's next. I also thought is this it from now on. Glad to hear you've picked up. I'm still a little behind you as only had my last cycle 3 and a half weeks ago.
I think, am I right Jacksy..your avatar was a pic of you as a toddler? 🙂
Waves to mrsblue and Chris. 🙂

Good Luck smithy70, I hope your last chemo helped, have you tried to get a second opinion about surgery? Lots of people do. I still have my primary but it's much smaller so, at the moment, it's ok for me but you're not alone in wanting surgery, lots of forum users with secondaries feel the same as you.
Take Care All..x
scottishlass
Member

Re: Finding a new 'normal' after liver resection

Jacksy, so lovely to see you posting again. I haven't spoken to you since 2011 I think!
Most of have lowes like this. I was on chemo recently and it completely floored me and I had to go to bed every afternoon and off to bed for 12 hours at bedtime and my very thought were "what a waste of good time". I am off chemo now. Had a CT scan on my head yesterday and get the results on Monday. I will be delighted if they say they have found a brain at all!
But I am feeling so much better and I did not think I woud ever feel this good again. I honestly thought "this is how it is going to be from now on". But it wasn't and I am overjoyed that I can go shopping and do more than one thing in a day. I couldn't for example go out to the shop in the morning and then do anything else later in the afternoon as I was so fatigued.
But I am delighted to see you here again. I cannot remember the name of the thread we all used to write on. I can see our old private messages. I know most of you above of course and see you posting frequently which is nice. Keep well meantime and let us know how you are doing Jacksy. That is what we are here for afterall. Hugs, Val Wish I coud remember what your avatar looked like or didn't you have one?

Guest user
Not applicable

Re: Finding a new 'normal' after liver resection

August 2011 I was diagnosed with breast cancer and when I returned a week later I was told it was also in my liver. I have had no surgery, they won't consider it, since I was diagnosed I have tried tamoxifen to no effect, then FEC chemotherapy, then arimidex and zoladex which slowed it down for less than a year, I have just finished 18 weeks of paclataxyl, I am still trying to persuade them that I want surgery as I want to be cancer free, good luck and I hope you get your life back, I want mine too xxx
Steris
Member

Re: Finding a new 'normal' after liver resection

Hi Jacksy,

I remember reading your thread and followed it although I don't have liver mets. You really are an inspiration to many ladies on here and give hope to other of what could be.

it never easy living with secondary breast cancer and life is very different your world is turned literally on its head. I've had to retire from work and had serveral progression plus further spread to my bones. I know this sounds awful but there are times I feel totally indifferent to my cancer almost in the third person but it really is what works for you. There is no hard or fast rules.

As Belinda has said you have had major surgery and your body needs time to recover. I think we are all impatient with ourselves and we are far to harsh too. I know my expectations from me are at times are unrealistic and I've learnt to cut myself some slack. All I want to say is be kind to yourself and its great you have supportive work colleague.

It lovely to hear from you and a great place to have a rant; even better if it helps!

Take care jacksy
Chris x

belinda
Member

Re: Finding a new 'normal' after liver resection

Hi again Jacksy, it's taken me many years to get to this 'living in the moment' point. But I feel better for getting there and have managed, so far this time, to stay with it despite both good and bad news over these last couple of years. From reading your first post here you live such a very full life. If I had come to this thread with newly discovered secondaries I would have felt inspired reading your story. A few months ago I re-read some old threads including the one you started as mentioned by mrs blue. I sometimes like to look back and feel connected to so many of those lovely people no longer here.
Long may you remain well Jacksy..Take Care..xx
Jacksy
Member

Re: Finding a new 'normal' after liver resection

Hi Belinda, thanks for posting And welcoming me back. Yes, living in the moment. I'm getting better at it but very slowly. I never pass a rose now without smelling it! I think I'm just too impatient with myself. How do you go about it, Belinda?
Mrs Blue, I know what you mean about the public nature of the forums. I suppose Bcc want anyone to be able to read and be encouraged / informed by other people's posts. I've almost given up caring about privacy though, so many people have now seen me with my top off! I will look up Eribulin, I don't know what that is. Glad your quality of life is generally good.
thanks for your replies
Jxx

mrsblue
Member

Re: Finding a new 'normal' after liver resection

Hi again to you both 🙂
I'm not keen on posting much about my situation on these BCC forums as they are so public - anyone can read them whether logged in/registered or not - and I refuse to use Facebook or other social networking.

Even if a treatment hasn't worked for me, I hope it will give good results for others, so I don't want to discourage. At the moment I'm on eribulin, but too early to know whether it's effective for me or not.

About the liver... my disease pattern is a bit strange because the CT scans of my liver are difficult to interpret - my oncs get more info from my blood results, liver function tests of course, also tumour markers, which have given good indication of what's going on. Still good quality of life apart from chemo SEs, which aren't too severe.
belinda
Member

Re: Finding a new 'normal' after liver resection

I had a little when I saw your name here Jacksy....it's been such a long time..and it's lovely to see you!
I know, a little, I think about these feelings and frustrations you talk about. I feel cross with myself for wasting times when I have felt well over these last ten years since my diagnosis. Even when things are going really well I can't whoop about it as I'm still a stage 4 patient. It's frustrating when people think if you're still around after 6 months (why is it always 6 months?) you're cured. I have tried to live in the moment more often and it's helped. It's made life easier for me. You have had a big operation, be kind to yourself. Love Belinda..x
Jacksy
Member

Re: Finding a new 'normal' after liver resection

Hi mrs blue!, yes I remember you, we met in Guildford didn't we? Thanks for replying. I think it's that old thing where, when you're in the midst of treatment/recovery, that's all you can focus on, but when you emerge blinking into the world at the end of treatment, it all seems a bit disappointing and HARD. How much longer must I keep doing this? And what is the alternative?!
Thank you for your kind comments, I'm glad to know I had a small part in encouraging you back then
How are you now?
Jx

mrsblue
Member

Re: Finding a new 'normal' after liver resection

Oh yes Jacksy, I do remember you.... what can I say but to offer a listening ear... and a very very gentle cyber hug... and to say that the liver is an amazing part of our body because it can regenerate itself, as I'm sure you know... but it will take time.
Meanwhile we are all here to support each other, though with some difficulty as these forums are not as user-friendly as some of us would like (BCC had promised us a new forum "late spring" 2013).
And also to say that your postings, especially that thread you started, helped give me hope when I was dx with liver mets in 2009.
June_BCC
Member

Re: Finding a new 'normal' after liver resection

Hello Jacksy


While you are waiting for replies maybe you give our free helpline a ring on 0808 800 6000 and have a chat with one of the breast care nurses who are there to support you, lines are open to Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.


With best wishes


June

Jacksy
Member

Finding a new 'normal' after liver resection

Hi Ladies,
I haven't been on here for a while but neeed to splurge to people who understand, as I'm struggling a bit.
I was diagnosed 2007 with primary and secondary (liver), had WLE, chemo and been on herceptin and tamoxifen since. Last year 2 rcurrences in my liver, 6 months apart.First I had radiofrequency ablation, after second recurrence I had a liver resection in December. I had 4 months off work and have returned on staged return. Occy health recommended I increase to full days over 4 weeks. Now, 4 weeks on and I'm still only managing mornings, so I've had to start cancelling afternoon appts I had made. My manager and colleagues couldn't be more supportive, and are happy for me to stick at mornings only, they are just pleased to have me back. I know I am very lucky in this respect. So what's the problem? I love my job, and I love the things I do outside of work (family, spiritual development, music, arts, gardening) but I'm SO frustrated that I'm having to go to bed in the afternoons, and i can't do all that I want to/used to fit into a day. I feel like a spoiled child saying 'I just want my life back'. I find it very hard to let people down or not to cope, or to ask for help, and I've been so good over the past 5 months, accepting meals, ironing, and being a really patient patient, just sitting around resting for hours on end. It doesn't come easily. I guess I thought when i went back to work, things would return to normal. Now I'm wondering if they ever will, or if i have to settle for yet another form of normal.
I feel angry and frustrated and people are very kind and ask how I'm doing, but they still say stupid things about how I'm now 'cancer free' which makes me want to scream. How do i go forward from here? How long have I got until it returns? How do i keep going with the ruddy uncertainty? Is it possible that it won't return? as it was only in my liver, maybe there were only ever a few cells that found their way to my liver... and if so, please can I stop my treatment and enjoy myself! What about work, will i ever get my energy back? do i settle for less hours, will I need to take early retirement? Even if i remain well I don't feel i could ever change jobs as these people knew me before cancer and i can't see any new employer being as accommodating of hospital visits etc. That leaves me treading water for the rest of my life.
I know I'm really really fortunate to have had such good treatment, to have supportive family and friends and a full and interesting life, and to be so well. I really shouldn't be complaining, but I think it comes from the internal pressures I put on myself, and it seems impossible to change that.
This has been a bit of a rant. If you're still reading then thank you. Would anyone like to comment? Does anyone know what I'm talking about?
J