Secondary breast cancer in the liver

Hi… I have just been diagnosed with secondary in my liver, had secondary in one of my ovaries this time last year.
I’m awaiting CT scans of liver, chest and bones but have been put on Letrozole . My oncologist assures me that there are lots of treatments available after this too. I had only just got into a positive frame of mind following my initial diagnosis three years ago but now find my mood and general health have dropped significantly and feel overwhelmed and scared that I won’t see my daughter graduate ( she’s in her first year at Cambridge) or my son go to Uni ( he’s 16).
Does anyone have experience of Letrozole ? Experience of the next stage chemo? Feel like I can’t plan ahead in case I’m too ill or just not here!
Thank you! MM x

Bumping this up for you MM as there are a lot of member with 2ndaries in their liver and hope they will see your post. I have had extensive bone secondaries for 10 years now, although initially diagnosed with primary in 1990 and like you my daughter was also at Cambridge and I had all those fears of not seeing them graduate, not seeing them married or having grandchildren and it has all happened for me. With that first dx of 2ndaries come so many fears but there are so many successes with treatments so hang in there and you will find that positivity you had before. I’m not one of those that bangs on about it but I do think that if that is how we are ‘made’ you will find it again.

Sending hugs
Dawn
xx

Hello MM

Sorry to hear your news. I was diagnosed with liver and bone mets in January 2010. I had 6 cycles of capecitabaine (oral chemo) and have been on a combination of letrozole and zolodex (both hormone treatments) and ibondranate for my bones ever since.

After the chemo my liver mets reduced significantly and, at last scan, no mets were visible in my liver. I felt pretty poorly by the time secondaries were diagnosed and, since chemo, I have felt really well. My bones give me trouble from time to time but I concentrate on worrying about my liver!

I have ct scans every three months and am, touch wood, responding very well to the hormone treatment. Letrozole can make your joints quite achey, so that’s a common side effect to look out for.

I wish you well with your treatment, please PM me, or write on this post if you have any questions.

Alison x

Hi,
I haven’t got liver mets, just bones for me, but I am on letrozole.It has kept me stable (mets dx May 2010)so am pleased with it. IZt can make your joints ache and stiff but I’ll putup with that if it keeps spread at bay!
Hope some liver ladies come along and give you additional help/info. Good luck! Julie

Hi MM,

I sympathise.I think I was more shocked when I was told I had liver mets than when I was first told I had breast cancer, BUT my oncologist has been very upbeat about it so far and swears by Radio Frequency Ablation, Tests as to whether I am a suitable candidate for that are my next task. I have found several posts about this treatment which have been quite helpful.

Sorry, this doesn’t answer your question and I have no experience (yet!) of the drug you mentioned, but what I am trying to say is try not to lose heart. If what I have been told is correct (and I do have tremendous faith in my oncologist) there are fabulous treatments now AND there is real hope…

Wishing you renewed optimism and peace of mind…

V

Hi MM

Sorry to hear your news and welcome to club Mets - where none of us want to be card-carrying members :frowning:

I was diagnosed with mets to liver, lung, axilla and multiple bones in June last year after a routine breast scan, age 49. I know the shock you are feeling. I also have 2 kids (12 & 14) and the sense of not being there for them can be overwhelming.

Give yourself some time to come to terms with it and don’t be too hard on yourself. We are allowed good days as well as bad ones. My best advice is to live in the moment, which I know can be difficult to do. If you are feeling well and can get out and do stuff, appreciate this. I did 6 lots of chemo and am now on Tamoxifen with my next scan in May. Currently I feel well and am working full time between 2 jobs. I live from scan to scan. The last one showed stability so I parked that and do my best to get on with living, not thinking any further ahead than my next one.

It will get better and you will find a way of coping. Please feel free to pm me if you want to vent / chat.

Hugs

Laurie x

Hi MM

I was diagnosed with liver, bone and lung mets in November 2011 and my liver mets were so extensive I was given 6 weeks!!! I am 44 with a 9 and 7 year old.
I was immediately put on capecitabine and it has worked wonders - blood tests including liver and tumour markers are now normal and my Onc is now considering AI’s for me and has said that I have moved from extremley poor prognosis to good. Not curable but manageable.
It is very hard to get your head round and i have extremely good days and crap days but I am getting there.
My family and friends have been awesome.
This forum is a good send.
Love
Anne xx

Hi MM
I also have liver mets had six FEC last year and have been on tamoxifen since sept 11, I saw a liver consultant yesterday and was devstated to hear him say there is a substatial amount of new growth in a new area and also “something” in my chest. I have an app with my onc on 3 April when I will find out my new treatment plan I will let you know if it is the same as you.

Hello Ann2, I am pleased to hear your good news on Capecitabine. I have just finished my 2nd cycle of it, and feel so awful on it. Think I have every side effect going. My life revolves around bed to sofa, sofa to bed. But seeing your posting has given me some hope. I am having an extra week off it as my white cells are low and then am going on a 3/4 strenght dose to see if aleviates some of the side effects.
I wish you all the very best
Jane xxx

Hi MoaningMyrtle

As well as the support you are receiving here BCC also offer other support for women diagnosed with secondaries. If you would like to find more information just use this link, which takes you to the different services available:

breastcancercare.org.uk/secondaries

I hope this is helpful.

Best wishes Sam, BCC Facilitator

Hi
I was diagnosed with secondary from the start in liver 5 days after giving birth,
I had EC and then radio frequency ablation.
For me unfortunately it was not successful and keeps coming back but I’ve had since June 2010.
I’m on capecitabine and avastin now as triple negative so hormones don’t work.
There are many ladies who are hormone positive who do well with liver mets and seem to stay under control for years.
Good luck with the treatment
Jo

Hi Jane

I too had horrible side effets from my 1st three cycles - has two weeks off and now on a 25% reduced dose and feel fab (well soo much better).
I am doing everything i was pre diagnosis and actually feel the best I have since October. I had started to take up jogging but was too ill but have decided to start again this week - need to prove to myself that I can do it.!!
Not going to let the … get me down - I have too much to live for.

My amazing family and friends have been awesome and without them christs knows what place I would be in know.
Its hard to get your head round - and now most days I am ok - I have the odd blip - but my best friend has been awesome and is always there for me and seems to know when I am struggling. Makes you realise who your friends really are.

Love

Anne xx

Hi
I was diagnosed last week with secondaries in my lung, upper lymph nodes and my liver.As you would know it was a tremendous shock and yesterday my onc said the liver mets were up to around 50% so at the moment myself and family are freaking out and i feel like completely giving up which is not me at all, I have been positive through both lots of breast cancer since 2007. I am back at the hospital Friday to pick up my medication of Capecitabine and lapatinib and start my first cycle. I have seen that some of the side effects can be harsh, and my toes are still suffering from neuropathy since my taxotere finished in April last year, and only finished my herceptin in February which obviously didnt work for me. I would be grateful if anyone has any words of wisdom to help me through the next few weeks.
Cheers
Annabelle xx

Hi Annabelle

I am sorry to learn of your secondary diagnosis, so to try and help you I have put for you below links to some of BCC’s publications which you may find helpful.

Secondary BC:
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc58

Secondary Resource pack:
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc173

As well as the above do give the helpline here a call and talk things through with them, they’re here to support you through this.

Take care,
Jo, Facilitator

Hello ALL
I hope you do not mind me joining this forum. I hope you are all doing okay (as can be). I just heard on Friday last week that my triple negative cancer diagnosed last June has returned to the Liver. I had bilateral, FEC-T six sessions and 15 rads and completed treatment March this year. The legions are large and cannot have radio frequency ablation now - maybe later if they shrink. Yesterday I started on a cylce of Gemcitabine and cisplatin chemotherapy. I have a daughter of 11 and am really scared. I am told it is controllable not curable.

Any motivating stories on the above medications working on anyone else? or any others? Please help

Sonia

Hi Annabelle and Sonia,

I feel for you both. Diagnosis of secondaries in my liver was a tremendous shock for me, in fact probably more of a shock than the original diagnosis of breast cancer. And yes, it is dreadful to try to manage your fears about a new diagnosis when you have children. So sorry that you are going through this.

I am not familiar with the drugs you each speak of apart from Herceptin, which I will be taking for life. At the moment my liver mets have been dealt with by chemo, Herceptin and radio frequency ablation but I am not confident that I will not have future problems. Originally the mets were too large for RFA but they reduced under chemo sufficiently for me to undergo RFA, SO HOPEFULLY that will be your experience too.

You need replies from others who can contribute more than I can,so I hope that this reply will bump this further up the list of posts.

Wishing you lots of luck and success with your treatments.

Verity xx

Ann I have sent you a pm. Check your message box.

alesta29
Yes, I received it, thank you and have sent a reply.

Hello Ladies,
I usually post on the bone mets site and chemo site but wonder if I can ask for advice here. My BC is very er and pr positive. I was on tamoxifen since Oct 2010. Had PET/CT in December 2011 which showed it had spread to my last remaining ovary. A MRI scan showed it had infected some nodes to. Had ovary removed at which time the surgeon said it looked like I also had liver mets - I presume these didn’t show up on the MRI scan. I was then put on Taxol and have just recently had my halfway scan. Bones are healing up which is great although they never gave me any problems, ONC did mention my liver. He wanted to talk to the radiologist as liver showed an area and he wanted to make sure this hadn’t come up since the start of chemo. He did say that often liver mets don’t show up on scans as they are so similar to normal cells but show up when they have been killed by chemo as they go to mush. Is this true - is there a technical term for it.
Claire

Hi Claire, yes I can confirm the technical term for a liver met which has dissapeared is called Mush!!! seriously, my liver mets didn’t show up on ultrasound, but 3 teeny weent ones showed up on CT. After 6 FEC they became inactive and all they could see on CT was the site of old liver mets. Aparently the site where it’s healed shows up well as the area is well defined… xxx