Secondary BC with liver Mets advice please

[Mitch23]

hi stelwah

In answer to your question I basically had an ultrasound after three months and the lesions had grown and I had two tiny dots as well. Talk about panic! however, I found out later that there was only ever a 50/50 chance of it working!  My onc didnt tell me this so i was devastated when they had grown. It does work for others though just not me! the cape has shrunk them considerably after 3 cycles however im still terrified for next scan. they seem to have a protocol. Tamoxifen, zolaex and letrazole then cape. obviously this depends on wether you are her+ or her-. I have asked about the radio frequency ablation . I get the impression that its not used much either. Also, cyberknife this seems to be used for liver but I got the impression they like to try and shrink them as much as possible first. Its a real minefield and such a bumpy journey. You read all these things on the internet but some of them don't apply to you. Its hard not to read it though.

you sound like you have had quite a journey yourself having had cancer 14 years ago?

Hoping everyone is well!

hugs

jo xx

[Katherine2701]

Hi Stelwah, sorry you've joined our little club but a big welcome to you anyway! Some of the other members have really given a lot of detail to you which I am sure will help. I've received more help from this forum than from my breast cancer nurse who I haven't seen or heard from for 18 months! Anyway, you need to be scanned every three months as I understand it. Don't let that slip too much. I did with my first oncologist who didn't check me for 9 months at all and I ended up with my tumours worse than after my first course of chemo. I have a fab oncologist now who is seeing me every three months but also keeping in touch. I hope everything goes well for you. Hugs Katherine

[Stelwah]

Thanks for the warm welcome ladies, lovely to hear from you. I had wondered if it was initially scans/tests every three months, so will ask. Sounds like everyone was put onto hormone treatments as the first 'weapon in the arsenal'. Has radio frequency ablation been mentioned to anyone - have heard of this, but doesn't seem to be commonly used?

I'm 38 and being treated at the QE in Birmingham, I've had a liver biopsy done already to confirm receptor status is same as primary. Starting back at work next week after being off for mastectomy, be nice to get some normal structure back to my week.

Jo - you mentioned that zoladex and letrozole didn't work out for you, how was this determined? Glad the chemo tablet seems to be doing some serious shrinkage!

Nicky - thanks for warning of menopause side effects, know they'll kick in at some point but hoping I may be lucky - had hardly any side effects on FEC-T chemo so hoping will be as jammy again! Hasn't realised the receptor status could change, am HER- as it currently stands.

Helen - Sorry to hear you had double whammy as well, lot to take on board in a short space of time. I was treated for a different cancer 14 years ago, but very different treatment and considerations this time. Thanks for suggestion of checking out the bone mets thread for general chats/support, will definitely check it out.

[nicky08]

Hi Stelwah, sorry you have to join us in the secondaries part of the forum, somewhere that none of us want to be. However, as Helen has said, we are a supportive group and can offer advice based on our own experiences which has been invaluable to me over the last 6 years of having mets. For specific liver mets questions there are a few threads that are going on at the moment so hopefully any post you do will get picked up and the bone mets thread is useful to look at for overall advice and support.
I had hormone positive BC for 10 years so was treated with hormones as well as chemotherapy when my bone mets were found. However since a liver biopsy last year I am now HER+ (having been HER- for 10 years) so am going through another course of chemo together with Herceptin. As your diagnosis for primary has also shown up liver mets it is unlikely you would need a biopsy to confirm HER status as this should be the same as the primary, it's only over time that the HER status can change and this is only in the minority of cases. I was offered hormone treatment for my bone mets but, as I also had a local recurrence, I decided to go straight onto chemo, whether this was the right decision, who knows. It did work very well but also left me with long term damage to the heart which in turn caused massive problems last year when I needed Herceptin. Once you start on the treatment you should be scanned every 3 months to see if its working well, if your hospital/onc uses tumour markers you will also have a blood test to see how these are going. They give an indication of effectiveness of treatment but aren't used by all onc's and they can't determine the actual effectiveness they are just a guide. When I was on Arimidex, after my chemo had finished, I was scanned every 3 months, then gradually every 6 months until eventually every year, and this seems the pattern for most of us. I hope you will get on well with zoladex and letrozole but I expect you will get menopausal side effects sooner rather than later so be aware!
Good luck and keep in touch and ask any questions you might have, someone will always be able to help.
Nicky x

[Mitch23]

Hi stelwah
Welcome to the forum but sorry you have to be here. I'm relatively new on here as well. I too am ER+ and started off in the zoladex , letrazole tablets. I took fir three months but didn't work out for me. It does however work for many people! I am now on capecitabine which is a chemo tablet (same as helen) same structure bloods and tablets on same day. Scan every three cycles. A cycle on cape is normally two weeks on and one week off. I had two lesions and two dots on my liver. After cycle three they scanned me and there was significant shrinkage. There is now two very small lesions and I'm hoping they shrink even more! I see my onc every three weeks and CNS then as well. I also have email contact with her whenever I need it. I'm at the marsden Chelsea. What hospital are you at? It's all trial and error in the beginning. Waiting for scans and test results is scary but we are all in the same boat on here!
Best wishes
Jo x

[2catlady]

Hi,stelwah,so sorry you are joining us but you will find lots of support and advice from the ladies on here.
I had a double whammy diagnosis like you last June 13 and was ER+ (bone mets) I was on tamoxifen and then letrozole ( with zolodex injections) I hadn't had a bone /CT scan for a year even though I kept asking for one and the wouldn't let me have a mastectomy until this June. At that time they found out my status had changed (triple negative)and I had liver and lung mets!
I'm now on cap chemo and onto my third cycle ,I'll be getting scanned after every three now to see if it's working. I get blood tests every three weeks when I pick up my chemo and have denusumab injection for bones. I only see one onc. Don't see any BCN as there are none. You will see your onc.every couple of months or weeks at the beginning .But every hospital is different and the standards in care can range from dreadful ( my first hospital) to excellent .
Keep writing all your questions down for him.
We all understand what a scary time it is for you and it does take a while to get your head around everything. Don't be hard on yourself and give yourself time.
A lot of us hang out on the bone mets thread regardless of mets and we are a friendly bunch ,so when your ready you can join us if you wish.
Sending you massive hugs,Helen xxxxxxxx

[Stelwah]

Hi ladies. Have just been reading your messages on this thread, and wanted to say hi and join in. I was diagnosed with primary breast cancer this year, so have had chemo and just had mastectomy - waiting for decision on whether I need radiotherapy. By fluke, a scan I had during chemo over the summer picked up a suspect liver lesion, which after a biopsy has now been confirmed as mets. Am ER+, so have just started on zoladex injections and letrozole tablets (so far no menopausal side effects, long may that continue!).

Can I ask how your docs monitor how you and the mets are responding to treatment - not sure if there are usually scans or blood tests, how often these tend to be done and how frequently you see your oncologist/CNS? Really appreciate any info - still trying to get my head around it all, so jotting down lots of questions for my next appointment .

[Katherine2701]

Hugs to you Mrs Blue for your lovely response. And bless you too for all your help. I sometimes worry about saying bless you in case people are offended but I mean it in the kindest way and not some overriding evangelical way that is overpowering! But for me the odd prayer and blessing helps and I hope others feel like that and can take it in that vein too.

[mrsblue]

Bless you (if I may) Katherine, I felt no pressure and you don't need to apologise!  🙂 ((hug))

What I intended to add - but forgot, grrr chemo brain - is that you yourself are already encouraging others.... I think there's a "give and receive" aspect to this Forum, we do what we can when we can.

[Katherine2701]

Hi Mrs Blue, oh I'm sorry if I put pressure on you by saying 'we're depending on you'. That was very tactless of me and I apologise. I too sometimes go weeks without coming on here but stories like yours do help and that was all I wanted to say really! So sorry for the pressure. I know it's the last thing you need. It just makes me feel good to hear of some longevity and good times on here.

[mrsblue]

Hi Katherine, thanks so much for your kind words 🙂

I think I know what you mean by "we're all depending on you" - but really, we're all in this together, not what we would have chosen 😞 but we can support each other.  I'm glad to post on here while I can, but a time will come when I might choose not to do so, I do have a life outside bc and I'm so thankful for unexpectedly long "extra time" to enjoy it.  I'm probably older than you (I have my bus pass!) but there are more treatments being developed for all types of bc.  Meanwhile, it's helpful to live one day at a time (and I need to take my own advice sometimes!)

I would really like to see BCC focusing more on secondary/metastatic bc, we have a long way to go before the general public understands this.  But for now, let's continue to support and encourage one another on here - to offer a listening ear when things aren't going well, and share our better news when we have some.  x

[2catlady]

Katherine,massive hugs xxxxxxxxxxx

[Katherine2701]

I'm keeping my fingers crossed it's working for you, but always know there are other options that, if this one doesn't work, others can and will.

[Katherine2701]

And bless you, Mrs Blue. You've kept me going through some difficult days. You keep on your roller coaster. We're all depending on you!

[Katherine2701]

Hi all, you're all very welcome to hear my story, I know there was a time when I wanted reassurance that I could get through this and wanted to share it with you all so that you too can realise you can get through this. I feel for you all with young children particularly. I cant wait for a cure to be found so that you can all look back and say 'those dark days are over'. With the side effects it's true, I feel terrible some days, but some days I have afternoons when I feel fine and can be like an almost normal human being again! Treatment has already improved in the two years since my diagnosis so it will keep improving all the time. You cuddle your babies and enjoy your time with them. Love Katherine

[kavir]

Thank you so much Katherine for your reassurance. I am now well into my treatment and just taking each day as it comes, I have weekly chemo  Tax and Avastin every two weeks, Have had 4 sessions so far and another 5 to go before scans. I am really down today and not looking forward to this week's chemo. But I know I need to do this for my kids, I find support from all the ladies here priceless. Wishing you all well.

[Gillg78]

Louise, at 36 , I have a 6 month old and a 2 year old. I am on my second dose of chemo and hoping that this will blast all my spine, shoulder, chest wall, liver and lung mets into shape...keep hope..our babies need us xxx

[Louised75]

Thank you for giving us hope Katherine. Writing this hugging my teething almost 8m old...

[Gillg78]

Katherine, thank you so much for your post and personal information! I cannot tell you the relief your story has given me tonight. My large liver tumour seems is what is causing me the most anxiety at the moment. To hear how you are living and treatments after dx has just reignited my hope. Thank you x

[EJ81]

Thank you Katherine. Its always so good to hear the positives. Its funny but I already feel a lot more OK with things than a few months ago. Still waiting for some good news as my last scan showed tumour had grown. However my new chemo is much more manageable so there is always a bright side!

[2catlady]

Hi,Katherine, I hope I'm doing okay. I was a bit worried about having the three week break for my hols as have only had two cycles and was glad to get back on chemo on Friday,god I never thought I'd say that ! I'm getting scan at 4th cycles because of break as onc said tumours would grow then with not taking chemo,yikes so I'm fingers crossed it's kicking Cs butt and for once something will work.
Huge hugs and keep kicking Cs butt,Helen xxxxxx

[Katherine2701]

Hi Helen, how are you doing on the oral chemo?

[Katherine2701]

To Kavir, ej81 and Louise, at 49 years of age last April 2013 I was diagnosed with triple neg breast cancer with inflammatory breast cancer of the skin, with multiple (too many to count) liver and lung mets. My largest tumour in my liver was 9cms but there were numerous tumours in each lobe. They said it was too late to operate and give me a mastectomy because there was little chance of me pulling through as the surgeon kindly said. I can tell you both that, having had chemo that reduced the initial tumours substantially to then having Tamoxifen, my tumours reduced. That was last year in September. This year in July the tumours have come back with a vengeance, the largest one in my liver now 13cms. However, I have been given an oral chemo which has knocked the tumours for six and my Oncologist has now advised me I can just keep living with this chemo for as long as I can and want to stay on the oral chemo which seems doable.

I know with young children you all must be devastated but let me tell you this isn't the death sentence it once was. Sure, you'll have days of feeling ill but you will also have days of feeling okay and you WILL be around to be with your children. More and more treatment is coming online all the time. In ten years time you will look back and remember these dark days and smile that they are over.

[Gillg78]

Hi kafir,
Just wanted to put another to find out how this are progressing with your treatments. Was interested that your treatment plan referred to both surgery and radiotherapy after initial chemo course and just thought I would pop a note to see how things are going for you. Hope you feel well. Xx

[kavir]

Many thanks for your kind words. I certainly am beginning to see that this isn't the end of the world!! I guess once I get a treatment plan, things should fall into place. Its great to have a site where one can moan and groan and not be judged for it. I certainly have picked up a lot of information and experiences that is comforting. I am sure I will get through this and wish everyone else all the best.

[mrsblue]

Hello Kavir and others who've recently had the unwelcome (or choose your ****-word) news of liver mets.  There IS life after such a diagnosis - my liver mets dx was in 2009 and I'm still on the roller coaster, thanks to various chemos and hormonal therapies (but no thanks to Taxol which didn't work for me 😞 ) I'm also a Marsden lady, it's great having a mets-clinic and CNS ( = clinical nurse specialist, otherwise known as BCN) so welcome to those awaiting referral and/or treatment plan.  Clinic can be busy though! - bring your knitting or MP3 player  while waiting 🙂

[EJ81]

Kavir, so sorry you are joining us but like Helen says this is a great place for support. It is devastating but believe it or not you do find a new 'normal' once things begin to sink in. There are lots of options for treatment these days and lots of people on here have been going for a long time. I don't know if it helps but my bcn suggested viewing this as a chronic condition - needing more treatment at some times than others. Xxx

[2catlady]

So sorry,kavir,to hear your news. You have come the the right place to get support. Once you get your treatment plan sorted you will feel more in control . It's a very scary time and we are all understand. I was diagnosed with liver and lung progression last month after being diagnosed with primary and bone mets last June. You do learn to live with it and the support on hear has helped me immensely . There are lots of treatments out there and to try so hang onto that. There is a much older liver mets thread I'll bump up for you with some Neely diagnosed ladies that's full of information too.
Please jump in any thread and chat with us(we tend to hang out on bone mets regardless of mets) we are all here for you,
Huge hugs,Helen xxxxxxxx

[belinda]

So sorry to hear your news kavir but this is a very supportive place. You may find the link at the end of this message helpful. Somehow we all move forward from the initial shock of our stage 4 diagnosis. There is a life to be lived still, very best wishes.
http://www.bcna.org.au/sites/default/files/hh_messageofhope.pdf

[kavir]

Hi

I just received the devasting news that my BC is 4th stage with liver mets. I am totally lost and just don't know how to react. My treatment will be at royal marsden possibly 8 chemos, surgery then radiotherapy. I found this thread and feel a little comforted that I am not alone but the thought of how long to have is at the back of my mind. I have a 14yr old and a 9 yr old and really do want to be around to see them grow up.

I see my oncologist on Monday to finalise treatment details which is frightening in itself. Thank you for putting this thread up.

[Newyork]

Hi Im her2 positive so have had a lot of her2 and chemo drugs since I was diagnosed in 2010. I have just finished taxol again and now just started kadcyla which is her2 targeted therapy and so far so good. I see you have a two year old, my daughter is three now and despite all the horrible cancer drugs and feeling rotten she puts a big smile on my face and makes me happy I hope your son can do the same. 🙂 charlotte

[EJ81]

Charlotte do you mind me asking what treatment you are having? I was diagnosed as secondary before my primary treatment started so my planned chemo was modified from FEC- T to just EC but at slightly higher doses. The idea being to keep the other two back for next time. xxx

[EJ81]

Hi Louise, sorry about your diagnosis. I got my DX of a liver secondary in May. Have already replied on the thread Belinda bumped up for us but didn't mention on there that I am also triple negative. I was feeling pretty bleak when I started this thread but I'm feeling much more positive now.

I too was referred to the Marsden and saw Prof name deleted by moderator who seems to be the 'guru' where triple negative is concerned. He was very positive and seemed to think there were plenty of treatment options available to me. I hope you get a positive meeting too. Good luck xxx

[Newyork]

Louise so sorry to hear your news. Just wanted to let you know that I was diagnosed with mets to bone during my pregnancy as well.....horrific. I'm 38 being treated at the Royal Marsden too so please do send me a private message if you want to chat further. Big hugs. Charlotte

[belinda]

Here's a link from Macmillan on ablation Helen,
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Radiofr...
The old thread was started in 2007 by Jacksy who last posted here in 2013.

[2catlady]

Hi,Belinda,thanks,I did think it was strange there wasn't a liver mets thread. Threads get lost so easily. I've never heard of liver ablation ,I'll ask onc about that .
Huge hugs,Helen xxxx

[belinda]

Hi all, I am stage 4, as far as I know I don't have liver mets but have just bumped up an old liver mets thread, "Anyone else with liver secondaries?" on the Living with Secondary forum. It was as popular as the bone mets thread at one time. I used to read it and pick up all sorts of info. It's too good to be at the bottom of the forums.
I did know a couple of friends who had liver ablation and it did help them for several years. You may already know far more about this procedure than I do. Apologies if that's the case. Best wishes. X

[2catlady]

Hi,Louise ,I'm so sorry about your diagnosis . I was diagnosed with progression from bones to liver and lung mets about a month ago. I've just started the oral chemo . I don't know if it's having any effect as early days.
Hopefully once you have a treatment place in place it will help you.
Please feel free to ask us anything we are a very friendly ,supportive bunch. There are ladies on here who have years of experience.
We tend to all hang out on the bone mets thread regardless of our mets so please feel free to join us on there.
Sending you massive hugs,Helen xxxxxxx

[Louised75]

Hi, I am triple neg. 39, and told yesterday I had liver mets. I was diagnosed in Feb whilst pregnant withh my third. I am still trying to take it all in. I was on FecT but the Tax was not effective so moved onto GemCarbo. I would be keen to find out about your treatment plan. I have just been referred to the royal marsden so don't yet have a treatment plan.

[EJ81]

Hi elliedog,

Thank you so much for your reply it has made me feel more positive about my prospects. I only had left mastectomy 2 weeks ago before we found out about my liver - scans were inconclusive so they wheeled me off for a biopsy the day after surgery! Had primary dx a month ago.

My onc did say there were still lots of options so let's hope I can be one of these ten-year ladies too! X

[elliedog]

Hi. I was dx with liver mets at the same time as my primary dx Feb 2013.I am Her positive which qualified me for Herceptin and Pertuzumab. So my first line of treatment was docetaxol (chemo),Herceptin and Pertuzumab after my right breast mx.After 6 treatments my liver mets were resolved. I now just have the Herceptin and the Pertuzumab and Tamoxifen. Apart from the Tamoxifen causing me to itch and scratch of an evening I am nearly back to my old self with plenty of energy.My onc said that they suspect that there are many primary ladies that are already stage 4 but without knowing however chemo seems to deal with their mets. Also if they get the right treatment liver mets can do really well now because there are more and more treatments coming through. My onc said he has ladies living well ten years later with mets and cant see why I cant do the same. My children are 15 and 10 and I expect to be here to see them become adults.x

[EJ81]

I'm quite new to all this and hoping for some advice from others with liver Mets. Saw onc yesterday and she confirmed I have secondary BC. I'm also triple -ve.

Until yesterday I was still expecting to have the chemo she had talked about before (FECT) but now she is thinking about giving me something easier to handle which will give me a better quality of life during treatment. I can't remember the name of the drug she suggested I forgot to write it down.

I am 32 with a 2 year old son and I am devastated. I just want as much time with him and my husband as possible. Would anyone mind letting me know if they've had to make a similar choice? My gut instinct is to hit it as hard as possible but I am also aware that my son has already been upset by my need to recover from my mastectomy and keeps asking if I'm ok.

Any info or advice would be welcome as I feel completely lost.