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Liver mets. Need reassurance

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Liver mets. Need reassurance

Hello.  I have had mets to bones for 9 years.  Just been diagnosed with one met to liver.  Such a shock.  Am currently on Vinorelbine.  Have had most treatment options, ie all hormonals, paclitaxol, palbociclib.  I have nearly run out of options and I am scared.  Has anyone else survived for a while with liver mets?  Nan of threex

17 REPLIES 17
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Hi Bennie123,

so sorry you have had to join us here but there will be a lot of information and support for you.

the biopsy is important to find out if it is actually breast cancer in your liver and if it is to find out the hormone receptor status (estrogen, progesterone, HER). This will determine what your treatment will be.

My Breast cancer primary was 20 years ago and came back 4 years ago in my bones and this year was found in my liver also. I had a liver biopsy which I found a very easy procedure and not painful. I didn’t need to stay in hospital overnight.

please don’t read google about survival statistics. They are out of date as they take at least 5 years to collate and currently there are a lot of new treatments for us.

take care and ask anything you want 

xxx

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Hi all
I had Stage 3 Breast cancer 3 years ago. I had a full MX & tummy flap reconstruction. After a mammogram recall I was diagnosed with breast cancer on the other side & yesterday after a CT scan I was told I had tumours on the liver & they’ll confirm post-biopsy if it is secondaries or “mets” -is that what they’re called? Anyway I’m looking for reassurance, advice, anything - as right now I don’t know what to expect. 😞
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Hi BJR
I am so sorry you are in this situation and it is absolutely unacceptable that you are left waiting 8 weeks for scan results - I usually wait 2 weeks and find that unbearable. I would contact your oncologist secretary first thing Monday morning to arrange an earlier appointment as it seems likely she will be helpful. Wishing you good luck xx
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Hi Nicky.  Well, today isnt helping my stress levels.  Rain, rain and more rain here in the south east.  Good to know that you found Eribulin reasonably easy.  Do you know anything about the E+E combo, as that has also been mentioned for me.

do you know if RFA can be done whilst I am on chemo?

xx

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Hi BJR.  As someone else who is suffering from stress big time I felt I must reply to you.  It is incredible that you are being left so long without a follow up appointment and just on Denosumab.  Please do as Mermaid 007 suggests and make contact with a Macmillan nurse.

Regarding your headaches etc please mention this to your GP when you see them.  Stress really does cause some funny symptoms, I know this from experience.  I always think any new or unusual pain that lasts more than two weeks should be looked into.

Good luck and let us know how you get on.

x

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Thank you for the quick reply, even more frustrated with my care now, received letter in post today to say onc not available in December, so now appointment Jan 12th, that’s 8 weeks after my scan and 5 1/2 months since last appointment! I can’t believe it, I don’t think they realise how stressful life is for us ladies! 

Will insist that I get new onc with appointment at end November! 

Well that’s my rant over, no wonder they send these letters to arrive at weekends when no one available to phone! 

Have a good weekend, very wet here, and another update next week. Xx

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Hello,welcome to the thread.

im new to the “Liver “ side of things and am just about to give Faslodex a go.

I presume you may have more scans prior to appointment in December so your oncologist can see how well the chemo worked?  It’s horrible when they aren’t forthcoming with information. I too have just changed hospital and oncologist so I could get the Faslodex treatment and was hoping he would be more forthcoming than the last one with information but it’s like chipping away at stone! We need information we need reassurance and hope but they don’t seem to be able to give it. I have with both hospitals formed  a decent relationship with the oncologist secretary as they seem more helpful. You could phone the hospital and ask for Dr? Secretary and ask her for a point of contact if you have concerns or worries, there has to be someone there for you. Or as many do you can contact Macmillan nurses as they are very kind and with loads of info.

Keep searching these boards for info too and write on here anytime one of us crazy mets ladies will soon be along to try and help, we are all in it together xxx

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Hi All

 

I hope you don’t mind me joining  in this thread. I was diagnosed with Bone Mets 2 years ago and was on faslodex and denosumab. However, in March this year I had 2 large mets and a splattering of small ones through my liver, nodes in my lungs, a pelvic adnexal mass and a further lump in my left breast. (Which was my good one!) 

As a result, I stopped hormone therapy and went onto Docetaxel 6 rounds, all now complete,CT  scan says I’m stable. 

But im feeling very scared, I’m now only on Denosumab, nothing else, next onc appointment December.

i am seeing my GP this week as I want to change consultant, as my current one is not very forthcoming with information, so much so I only learnt about new breast lump and lung nodes from the letter he wrote to GP, he hadn’t ever mentioned to me!

for the last 2 weeks I’ve been experiencing bad head aches, flashing lights, some giddiness and nausea. I’m terrified that it’s now spread to brain. I’ve not had any scans on my head. I think I will mention to GP this week.

sadly in our area we don’t have a SBC Nurse, and the other nurses are reluctant to talk to Secondary ladies,

Although I suppose headaches could be stress,!

sorry for long post just would like to hear others thoughts as I don’t know anyone in the same position as me.

thanks

 

x

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Community Champion

Hi

Yes, I agree, the thought of changing treatments to yet another chemo does get you down especially if the current treatment isn’t too intrusive. Give yourself time to adjust to what may happen but try not to let it get you down for too long. Maybe arrange something nice to do over the weekend to take your mind off things - as we all know, that’s not always easy! As to re visiting chemos I’m not sure whether you can or not. I’ve always assumed that you can’t espeically if they normally are for a specific number of cycles. Certain ones can be for more cycles but if they have already been used in the past I think the oncologists feel they wouldn’t be effective if used again, but I don’t know. Eribulin is one of the chemos that can be used for more than 6 cycles and some ladies are on it for quite a while. I had 8 cycles as it was decided it might affect my bone marrow too much if I had more (this was after going onto it straight from a couple of other chemos so I suppose they were right to consider this might happen). It was quite a doable chemo and I didn’t lose my hair, it just thinned quite dramatically between the 1st and 2nd dose of the 1st cycle, as seems to be the case with most ladies. My neuts and wbc were hit quite badly so I used to have the GCSF injections which then boosted them really high(as opposed to when I had the GCSF with FEC and it hardly had an impact) . As they were so high most of the time I didn’t worry too much about infections but was aware of when they might be low and took extra precautions regarding infections. I know it’s difficult to say and do but I try not to let these bloody treatments etc get in the way of me doing things so I get on with things as much as I can, but understand if anyone else isnt able to.

Do keep in touch and we can support each other when we need it, that’s what’s so good about this forum as we do all understand how all of this affects us in so many different ways.

Nicky xx

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Hi Mermaid 007.  Trust me, you are not alone in how you feel.  My lesion is 18 mm.  I have had Faslodex twice, both times with another drug as well.  It certainly was easy.

The freezing is something I have never heard of but I am certainly going to look into that, along with the RFA.  I think if we can go to our doctors armed with information and opinions it always looks impressive!

Good luck and keep in touch,

xx

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Hi Nicky.  Yes, have indeed done letrozole and anastrozole.  How did you get on with Eribulin?  If the Vinorelbine doesnt work this will be my next course of action.  I am so scared my options have almost run out. Do you know if you can revisit chemos?

Your heart problem sounds so scarey and it just shows you how powerful these drugs are and what they can do to our bodies.

Have felt really down today.   Last time I had chemo, which was from September 2017 to March this year, I lost my hair for the second time.  I also felt I wasnt leading a normal life, I was petrified about going to crowded places such as the cinema, restaurants, trains etc in case I got an infection.  Didnt even go on holiday during that time.  Then I tell myself blow it, I will do what I want to do this time around.

So envious of people who have so called normal lives.

xx

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Hi Nanof3

Soinds like you have had a lot of treatments as we all seem to do if we are hormone positive. I didn’t know you had already had Fulvestrant but you don’t mention letrozole or anastrozole,  have you’ve had those as well? If not they are worth a shot! The size and number of liver lesions will determine if a targeted (rather than systemic) treatment is an option. Too many lesions then they won’t do it and if they are too small or too big they often won’t do any!  It’s a bit like the Goldilocks scenario of everything being ‘just right’ - bloody cancer! I was lucky in that my hospital is a centre for abdominal cancers with a 1st rate surgeon so he was willing (more than willing it seemed!) to operate even though I had more than 1 lesion in different parts of the liver plus I had bone mets as surgery is often not done in the case of other metastasis. RFA was considered last year but the main lesion had got too big for it so I went onto Eribulin which did shrink all the lesions.

Mermaid, I had vaguely heard of freezing the lesions but it’s nit been mentioned at my particular hospital. It is relatively new, I think, so maybe only some hospitals have the equipment? Worth a go if they think you are suitable. Well done for getting through the biopsy by the way. I didn’t want to worry you but my first one was pretty painful as they hadn’t anaesthetised all the area they eventually got the biopsy from, a bit like going to the dentist when they sometimes do the same!  Second time around I was expecting it to be awful when in fact she, the radiographer/radiologist, did a fantastic job and I didn’t feel a thing, other than the odd internal feeling you get by being numb. Your liver met is very small so they have caught it quickly so I really hope that faslodex sort the little bugger out! 

Good luck to all of us and it is good to share which is why this forum is so good for us all.

Nicky xx

Ps edited to answer Nans question about my heart problems: I had FEC chemo in 2008 and after the 6 cycles I had atrial fibrillation which was brought on by the chemo. Over the years it got worse, and was treated badly/incorrectly (which I now know but didn’t then) by my local hospital until I had quite severe heart failure. I was referred to a specialised unit at the Brompton in London who deal with the after effects of cancer treatments on the heart who patched me up and made me new again! 

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Hello Nanofthree

I was diagnosed stage 4 to bones 16 years after primary and once I got over the shock managed to convince myself it would always remain in the bones. So had a good three and half years on Exemestane and now have first progression in spine accompanied by a spot on liver. Like you I have been devastated. Today I had the biopsy which didn’t hurt at all and he told me it was 12mm. My new treatment is Faslodex so just hoping the little liver b****r responds to that!

I’m sorry we are in this boat but at least we’re not alone and reading what Nicky and Jacksy say gives me hope.

I asked the guy doing the biopsy about cyberknife and Rfa etc he said crytology would be good?something to do with freezing it instead of microwaving it? Nicky have you heard of this?

With love

x

 

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Hi Jacksy.  I am hating this club!  Thank you for your reply.  I am very interested in the RFA you mentioned and will bring this up at,the hospital next week.

 

I am amzed that your mets to the liver have disappeared.  Well done.

 

Any sign of your beautiful grandchild yet?  All I can say is cherish every moment, which we should all do whether we have cancer or not.  Our lives are more than cancer, even though it seems to engulf us at times.  I wish you all the best.

x

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Hi Nicky.  Thank you so much for your reply.   I have been on practically all treatments now.  Aromasin, tamoxifen, capecitabine, palbociclib with fulvestrant, paclitaxol and currently on vinorelbine. Eribulin will be the next treatment I think.

Even after all this time I am finding it so hard knowing that I will be on treatment for the rest of my life - however short that might be.

Like you, I always knew the cancer would spread outside the bones.  I think while it was in the bones I didnt feel too concerned but organ involvement puts a whole new outlook.

Last time I was at the hospital I did ask about surgery but they didnt seem to think this was appropriate because my bone mets are so extensive.  But I am very interested in the RFA you mentioned and will certainly mention it when I go for my check up at the end of next week.

Hope you dont mind me asking, but which treatment caused you to have heart problems and is that all ok now?

Im sure you are like me and want to spend as much time with your grandson as you can.  My eldest grandchild is 17.  He was born when I was having treatment for primary breast cancer.  My second one is 14 and she was born when I was in remission.  My little surprise is now 7 and she was born two years after my secondary diagnosis.  Cancer has been a cloud over my relationship with all of them.  Its a horrible, horrible disease.

 

 

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Hi Nanofthree

I remember you well from a few years ago but sorry to see you’re back on the worry wagon! I had a complete meltdown when my liver mets were found some 5 years ago, which was also about 5 years after my bone mets were dx. Although I had expected my mets to have spread at some point it was still an absolute shock. I had additional problems with heart failure caused by previous chemo which also meant my treatment options were limited at that point.

However I’m still here and, like Jacksy, have had a liver resection (ie surgery as opposed to the less intrusive RFA which wasn’t suitable due to the size of the main liver lesion). I have had various chemos since the liver mets were dx, including a shift of treatment to include Herceptin when a liver biopsy showed that I was now HER2+. I’m now back to being HER2- as surgery got rid of the rough lesion so I’m on the same type of treatments you have been on.  I see you have had various chemos but you haven’t mentioned Capecitabine or Eribulin, these have been effective for me. I’m also currently on Fulvestrant which my local hospital trust now finds although I know it’s not available nationwide under NICE, it may be worth asking about that?

I hope this helps with what things to ask about when you next see your oncologist.

Hi also to Jacksy - how lovely to become a Grandma. I became one last September and now have a lovely little grandson who I never even contemplated meeting when 1st dx with secondaries 10+ years ago! The top tip is to savour the moments and see your new grandchild as often as possible 😊 I told my daughter that I was going to ingrain myself in his psyche whatever happens ha ha.

Nicky xx

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Hi Nanofthree,

Im so sorry to hear your news it must be a shock after all this time. Do try not to panic though, there are plenty of us on here who have lived for many years with liver mets, and only one met showing up is a good sign and means you may be eligible for some targeted treatments. If you haven’t already, have a read of the threads about liver secondaries and in particular a current one called RFA (radio frequency ablation, where they zap the cells using radio waves) vs liver resection (surgery to remove the affected part). I have had both and currently don’t have any mets in my liver (since five and a half years ago) I certainly know one other person who like me is still going strong after 10+ years with liver mets. 

I hope you have a good team you feel you can trust and that you get some decisions about a treatment plan soon. I hate those times when something changes and you don’t yet know what the plan is. Once a plan is in place I sort of relax and trust that other people are sorting me out. A bit irrational, I know, as it doesn’t really change anything!

i see from your name that you’re an old-timer about this grandparenting thing. We are expecting our first grandchild any day now, so I’m super-excited and can’t wait to get into my new role. Any tips appreciated!

all the best Nan, keep us posted

Javksy xx