Just diagnosed with widespread liver mets!!

Help - just after some advice and reassurance please. A little about me - I was diagnosed in 2005 with Grade 3 IDC - involving 19 out of 29 lymph nodes and with vascular invasion. Had mastectomy and immediate recon - 3 FEC, 1 taxotare and 3 CMF (had masssive anaphylatic shock to 2nd tax!). Then maintained on tamoxifen. I am 44 with a 7 and 9 year old.

Anyway had been feeling ill for last 7 weeks and to cut a long story short was diagnosed on Monday with widespread liver mets and 2 very tiny spots on lungs (apparently the size of a pin head). Started capecitabine wednesday! Awaiting bone scan.
Just want to hear from other people in a similar situation - just can not get my head around it. Any advice, tips words of wisdom would be greatly appreciated. Many thanks Anne x

Hello Anne2

Welcome to the forums, you’ve come to the right place for support as the users of this site have a wealth of experience and knowledge between them.

Whilst waiting for replies you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.

Best wishes
June, moderator

Hi anne2 sorry to hear your news sorry cant help u with liver mets I’ve got lung mets and node inv I had chemo fin in aug had v good response lots shrinkage and at moe still stable I have a 12 yr old it’s a lot to take in at first but once treatment starts you get y head around it just wanted to say hi sending u big hugs xx

Hi ann2 would just like to say hi and sending big hugs xx

Hi Ann

Sorry to have had to join us on this board. I’ve had bone mets for nearly three years, but in August was diagnosed with multiple liver mets. I have had three cycles of Taxotere with three to go and the latest scan ‘seems’ to show stability although they are going to scan again in about three weeks time. I didn’t have any symptoms from the liver mets, was all picked up via tumour markers/blood tests - what sort of symptoms were you having?

Have heard really good things about capecitabine - several ladies on these boards have been on it for years and years, hope it works just as well for you and blasts all those mets into submission.

It’s really hard when you have young children, mine are a bit older than those at 15 and 13 - still hard whatever age they are though.

Take care
Lesley xx

Hi Guys

Thank you so much for the replies. Just feel so scared about the future at the moment.

My symptoms started with heart burn and left sided pain under ribs - then metallic taste in mouth, nausea and not interested in food (most unlike me!!). but GP was fab and did bloods at outset and lfts were off so he referred for liver uss and more bloods where it was picked up. Had ct scan and contrast to confirm diagnosis - strangley all above symptons except food one have dispppeared. Have had some right sided pain - not there all the time but gets me when least expected. Can not lie on right side due to pain.

Just realised I put date of diagnosis wrong - it was 2007 - did not quite get to my 5 years. :-((((( x

Have been researching about capecitabine - seems to have a good uptake - fingers crossed. x

Again thank you.
Anne x

Hi Anne - sorry to hear about your liver and (poss) lung mets dx, and hope that the capecitabine will really smack them! We’re all so different in the way we respond to our treatments, but just to let you know that I’ve been on capecitabine for 8 years, most of that time on a “half-dose” of 1000mg x twice a day, two weeks on and one week off. Along with exemestane (for ER+++ BC) and a tablet bisphosphonate (for bone mets), it’s kept my (quite extensive) bone & liver mets stable, and is probably an easier treatment than you will have experienced with IV chemo. There are a lot of us on this treatment now, so plenty of advice and support available here for you - let us know how you go on. xx

Hi Anne,

First sorry to heard about your secondary dx and I’m pleased that you have a treatment plan in place. It a very scary place to be in when you are first dx. I know I spent a good week in lala land. I couldn’t believe they were talking about me!

A little bit about me I’m 48 and was first dx in Feb '07 had stage 1 no lymph node involvement. Had lumpectomy and 15 rads sessions put on tamoxifen (horrendous se but put up with it as thought if it working then its worth it!)

I went to GP with back pain in Jan’09 fast forward to June '09 have filling up with fluid and being very ill I was told I have sec lung cancer I had a maligant pleural effusion,no one believed it as they primary dx was so good.

I had 3 fec & 3 tax which have worked for the last 2 years but the cancer is on the move and the fluid is reaccumulating. My oncologist has decided 6 lots of Capecitabine which should hopefully start in a week or so. If that work she said I will have two more then she will put mw on a maintenance dose for as long as it works. I’m also discussing having my ovaries removed and going on Faslodex which are monthly injections as Aromasion and Arimidex both stopped working for me.

I have a lot of pain from my right side the oncologist doesn’t know what the lumps are as they don’t show up on the ct scan. She thinks they are either scar tissue from the effusion or something more sinster but doesn’t want to biopsy them in case they cause spread. I take zomorph and pregamblin for the pain, which is hit and miss at the moment.

It would be good to share notes as to how you are gettingon/coping - they are some fanastic post which have given me a brighter out look. I was given a year to 18 months when I was first dx and I’m still here.
Lets hope Cap works well for everyone on it and the se are are kind to us.

Take care and I hope you are ok on Cap can you let me know how you’re getting on?
Chris xx

Hi Anne

Again sorry to heard about your recent spread, it is a very scary time for you and Christmas approaching doesn’t help. I was diagnosed with liver mets exactly this time last year (30th Nov) I had coped with the bone mets diagnosis earlier last year after hearing so many positive posts on here. But finding them in my liver was just a step to far…but we soon accept the information, as bad as it first seems! I had 18 months of failed AIs, I was given the full range and each scan showed further progression, I was very disheartened and scared. In August I was put on xeloda (capecitibine) and my most recent scans showed some improvements! Hooray something works for me at last!

I have tolerated this chemo remarkably well so far, the first month I had a few side effects, but this month have had none at all. It isn’t like being on chemo at all. Keeping your hair and ‘looking normal’ certainly helps! Meeting others , particularly Marilyn, has really helped me to come to terms with things, hearing of 8 years of liver mets being controlled with xeloda is certainly the inspiration I needed.

Take care Anne, there are quite a few xeloda threads, that you might be interested in, there are a few of us taking it…and I think last month there were quite a few posts of people having success with it. and there are liver mets threads, do keep in touch with us the support on here has what has got me through this so far,


Thank you guys for your replies - I think you are right just can not seem to get my head around it. Marilyn you definetly have given me hope - wow 8 years!!
This chemo does so far not seem as bad as iv chemo - long may it continue. Still feel sick and have that horrible taste in my mouth but to be honest can deal with that as long as it is zapping them.
looking forward to cyber chatting with you all and comparing notes.
Love Anne x

Hi Anne,

Sorry to hear your diagnosis and know what a shock it is.

I’m 49 and was diagnosed with secondaries to liver, lung and spine from the start after a routine breast scan in June this year. I had FEC x3 and had some progression in my liver and have just finished TAX x3. Am ER/PR +ve so moving onto Tamoxifen.

Have heard from women who are 6+ years out with liver mets and doing Ok and think the main thing is to hang onto those positive stories and to remember that each of our BC is individual to us and we don’t follow the statistics. (Remember - don’t ever Google BC stats!)

Hope the Xeloda works out well for you.

Laurie x