Secondary breast cancer of the liver - treatments

Dear All
My wife has just been diagnosed with secondary Breast cancer in the liver. I have spent a few hours reading leaflets, searching the internet and reading various discussion forums. We have also spoken to our specialist oncologist team and asked about various treatments. Having just finished chemo + radiotherapy following mastecomy the specialist noted the secondary cancer but because they previously did not do a scan of the liver they want to continue on the Tamoxifen and see what effect that has on the secondary by doing another scan in 3 months or so. I’m nervous about relying upon this and wonder whether we should consider a second opinion or not. Also I’m intrigued by other treatments/drugs that I’ve seen mentioned, for example:-

  1. Surgery
  2. Radiofrequency ablation
  3. EPI
  4. 5FU
  5. Tykerb
  6. Capecitabine
    etc

Does anyone have any experience of any of the above treatments? Some of the above may be totally unsuitable and I realise that all cases are different but I would appreciate any feedback whatsoever to enable us to ask the right questions/make the right decisions/try to feel like we have a measure of control/do not look back with hindsight and wish we’d tried something/asked something etc.

Also If I was to seek a second opinion, and this is a difficult question, which hospitals/specialists would you recommend?

Regards

Nigel

Hello Nigel,

Sorry to hear that your wife has been diagnosed with secondaries - it can be such a shock and takes time to get your head around it all. My experience was diagnosed with primary and secondary BC in Oct 2005. I have bone mets (ribs,pelvis,spine) and originally 1 single tumour in my liver. I had chemo (AC - 6 cycles) then went onto Tamoxifen which kept me stable for 18 months. During this stable period I was able to have RFA (aug 06). There are set guidelines but am not sure of them all but some are :- stable disease, limit to the number of tumours (5 I think) and size and obviously they need to be in an accessible location. The proceedure is quite simple and I just had a little discomfort for a few days and just took normal pain killers. I also have a bone strenghtening infusion monthly.

Unfortunately, but not unexpected, my tumour markers started to go up just before christmas and a recent scan showed new tumours in my liver so am now on Femara (hormone tab like tamoxifen) but if I do not respond to this I will have further chemo - Taxotere has been mentioned. I was told that if my disease becomes stable again there would be a possibility of having RFA to the liver tumours again.

Hope you get all the info you need from posts here and good luck,

Jetty

Hi Nigel

first thing I have to say is sorry you are here with us, and the second is you are obviously a supportive husband and your wife is lucky to have that. My OH would not dream of coming on here!! I am glad that you found these boards as I have found them a useful source of both information and support where people are really well informed and will share it.

I am on taxotere for liver secondaries which I understand is a fairly standard first line chemo in this situation. It is a stronger chemo than taxol, and many people have some response to it. My oncologist went straight to that as tamoxifen failed for me (as I was on it post primary diagnosis). I am guessing I will move on to zoladex plus arimidex next and try to hold the cancer down with that.

Surgery is an option in a very small minority of cases it has to be isolated tumour/s is my understanding. RFA is available if the spread in the liver is limited, so it is a possibility for more people. I have done a bit of research on that and it seems that the guidelines on this are a little flexible depending where you go.

You mention that they will wait for three months. Are there any plans to look at the tumour markers in between?: If they have a baseline measure of the CA15 3 now and take it in say 6 weeks they will have a pretty good idea of whether this strategy is working or not before three months, ask them about tumour markers, for a majority (not everyone) they are a reasonable indication of how treatment for secondary cancer is working. it seems to be true in my case as this is how it was picked up.

Second opinion ? Probably a good idea in my opinion only as it is probably a win win…all I mean by that is if you go to another reputable oncologist and they agree the strategy your mind will be set at rest, if they propose something more immediate and give good reasons you may both feel better. Where are you located? Do you have medical insurance ? (I only suggest that as it may speed up the process )

best wishes to you both in this very difficult situation

Cathy

Hi,

Sorry to hear that your wife has secondaries. I was diagnosed with liver secondaries in July 2005. I was put straight onto Herceptin with a course of Vinorelbine. After Vinorelbine I was put on Capecitabine (Xeloda),still with Herceptin, which I’ve been on since. For the past year the lesions on my liver have not been visible on CT scans. So this treatment has worked for me.

Wendy

Hi Nigel,
Sorry to hear about your wife, you must be very caring to be brave enough to come on this board, it would scare my OH to death.
I was diagnosed with breast cancer in June 07 then 3 weeks later my liver secondaries were discovered, as I am ER+ they tried Tamoxifen first but unfortunately I became quite ill(jaundice, ascites etc) that they started me on weekly Epirubicin and continuous 5FU in Aug that finished just before Xmas. I had a break off all treatments and was started on Zoladex two weeks ago and will probably starting Armidex or another AI when I go in two weeks.
Its usual to see what happens with hormone therapy as it does take a while to kick in and work. Hormone therapy is usually the first line of treatment and I think they keep the chemos for when hormones don’t work any more.
Don’t know much about surgery or RFA as I have too numerous for these therapies.
As Cathy says tumour markes can be a useful tracking mechanism for some of us mine were 900 when I was very ill and are now 32 which is about as normal as you get.
Its good to look into all possibilites and discuss these with your onc.
If your wife ever feels like joining us please tell her she will greatly welcomed.
Take care
Allie

Hi Nigel I was diagnosed straight after BC - 05 treatment with liver secs - 07 I am HER2+ so I was on Herceptin as routine as it wasnt working I am on a trial drug along with Herceptin - Omnitarg which has shrunk the tumours by 1/3 and holding this treatment isnt in your list but I thought that if we all cheer you on it might help I meet lots of cheerful ladies at Christie getting on with their lives despite their diagnosis some have been going to the drug trial unit for years! Sorry you had to join us x Jan

Hi, me again,

I’ll try answer some of your questions.

  1. Surgery. If spread has occured in the liver, there are often micro-mets present which may be too small to show on scans. Therefore they tend not to perform surgery as there is a high chance of mets still lurking even after removing obvious cancer.
  2. RFA can be an appropriate form of treatment for liver mets if there are only a few mets which have to be under a certain size.
  3. EPI this is a shortform for Epirubicin, which is often part of the cocktail of drugs given for primary treatment. It is the ‘E’ in FEC.
    4.5FU This is the ‘F’ part of FEC chemo and the ‘active’ ingredient in Capecitabine.
    5, Tykerb. I think this is presently still being trialled and is usually given to Her2+ patients, who may have had Herceptin stop working for them.

The Royal Marsden is one of the biggies to go to for a second opinion. Where is your wife being treated at present?

I hope I have got this stuff right. It makes such a difference to go to your onc armed with information. Mine thinks I am ‘well-read’ and listens seriously to my suggestions. I feel as though I have definitely got at least an ‘A’ level in BC after studying it for over two years now and I feel more confident in knowing the likely course of my disease and what options are available to me.

Jenny.

1 Like

Hi Nigel,
I am glad to see that you found this site. I happened to be looking at the Macmllan site and saw your post on there yesterday. I wanted to tell you about us ladies on here, but couldn’t get set up with a log-in. Anyway, I am so sorry to hear about your wife’s diagnosis. Have you had a look at the thread entitled ‘any one else with liver sacondaries?’ (spelling!). If you go back to the beginning of the thread there’s a lot of ladies introducing themselves and talking about what treatment they are receiving, which might help you get a handle on it. Your wife is very welcome to join in, or you could join us yourself.
I was diagnosed in March 2007 with a primary (removed) and they soon found a secondary in my liver. I went ahead and had the same chemo I had just started, which took until November because of various complications. I started on FEC and changed to Taxol with Herceptin. I’m now on Tamoxifen and Herceptin for the foreseeable future. My tumour has shrunk steadily from 3.5 to 1.5cm.
I’m considering a liver resection or RFA in future, if possible, but at the moment they are pleased I’m responding to the regime and don’t want to change anything.
Do ask away about anything you want to know - there’s a wealth of experience here and lots of wonderful supportive people.
Please give your wife a hug from us
Jacquie

Thank you everyone for your kind words & feedback - You are all an inspiration!!

We live in Yorkshire - We’re currently being treated at York NHS + have had radiotheraphy at St James’ in Leeds.

I have lots of questions but for now:-

  1. If we want a second opinion re surgery/RFA etc do we want to see a “Liver Specialist” or a Cancer/Oncology specialist?

  2. What’s the difference between a) Lesions b) tumours c) spots (We were so shocked to have a cancerous growth we didn’t think to ask about what type it might be)

  3. What are tumour markers? What do they represent? What do the number mean?

  4. If “lesions are not visible” what does this mean?

  5. What’s a “CA15 3” as referred in “baseline measure of the CA15 3” by Cathy?.

  6. The forums I’ve looked at mention the Royal Marsden and Christies as being hospitals with excellent reputations - are there any others

  7. Is it better to use the NHS or go Private?

Best wishes

Nigel

Jacquie
Thanks for the tip - I had already found the thread ‘any one else with liver sacondaries?’ - it was exactly what I was looking for and was the one that I found the most interesting and informative and prompted me to be more active. I’ve read quite a bit of it (but not all of it yet as it must be one of the longest threads I’ve ever seen).
Best wishes
Nigel

Nigel

I am sorry to hear about your wife and I’m sure, like me, you will be inspired by the good ladies who post on this forum (especially the long, long thread).

I don’t know if this will help, but I have been taking Arimidex since being dx with many secondaries late Oct. I had my 3 month scan and chest x-rays on Wed and will get my results this coming Fri. Last month I was told that one of the tumours in my eye had shrunk a little and that my liver had been 4cm is now 2cm (still not got my head round what they actually mean). This does sound very encouraging, but I’m still anxious about my results.

Unlike your wife, I have not yet had to endure chemo/rads, but as I took Tamoxifen for 5yrs, there’s a good chance I may respond to hormone treatment once more.

I wish you both good luck.

Love,
Jen xx

Sorry Nigel, forgot to mention that I’m being treated at Weston Park, Sheffield and they’re supposed to be renowned for research/treatment. I am only a newbie, so time will tell.

Jen x

Hi Nigel

I am going to come back on the tumour markers as I raised them.
,
CA 15 3 is the name of a protein (i think!) that is shed by breast cancer and is detectible in the bloodstream…so the more you have of it the more cancer you have (cancer burden) is the theory. it doesn’t work for everyone, but if the doctors tell you its unreliable that is not true, it can’t be used for defintive diagnosis but it is a very very big clue to problems…ie you cant have tumour markers of 15 that move to 350 without virtual certainty of cancer. (wow Allie 900 to 32 - thats bloody amazing,)

As to private vs NHS, they are the same, the medical treatments are standardised, probably a good argument that the NHS is better if you are at a good center. Only things that is better about the private system is that things happen quicker…so if you have the insurance through work you could do that, if you are paying yourself the fees are extraordinary.

best
Cathy

Hi Nigel

I’d back up what Cathy says about private v NHS. I am private at present because of work related health insurance and am being being treated by the same Dr who would treat me at our local NHS hospital (Addenbrookes).
The main plus points of private are speed (for things such as CT scans) and some little extras -e’g. I had a portocath inserted for my chemo (wonderful, I LOVE my portocath) whereas in Addenbrookes they would have gone in through a vein and, if that collapsed, used an inline port. Much less comfortable and higher risk of infection.
I was also able to get Avastin - though as my Dr is running a trial at Addenbrookes I might well have been able to get on that anyway. And a private room with TV while you are getting your chemo. Not sure if that’s good or bad honestly - it’s quite nice to meet fellow cancer vixens…
The down side is the lack of ‘joined up’ services. When it comes to getting in touch with a Macmillan nurse, thinking about what extra care I might need long term, hospital v hospice (not for a while yet I hope) I will have to go back to the NHS and I might at that point move back entirely.
Incidentally, my liver tumour halved in size after 8 sessions of taxotere. Now getting to the end of 3 months on arimidex, so waiting for the results of the next scan with bated breath.
All the very best to you and your wife Nigel - she’s lucky to have such a supportive husband.

Manon

Hi again Nigel,
I’ll try to answer some of your questions.

  1. Second opinion - I believe you would need to see an oncologist, as they know all about how cancer behaves. A liver specialist wouldn’t have the same level of experience as far as the cancer goes. (When we were discussing referral for RFA/resection, my onc pointed out that we would need to do the bulk of the decision-making with him as, once he had referred me, the surgeon/RFA-person would almost certainly want to do the surgery/ablation, unless I didn’t fulfil their criteria. As he said ‘surgery is what they do’ and he was suggesting that I wouldn’t get an unbiased opinion from them.)
  2. Lesions/tumours/spots. I don’t know the difference except at first they said I had spots or lesions on my liver, which could have been other things than cancer (eg Haematoma or something. I think it’s a cluster of blood vessels or other cells) seen on a CT scan. After an MRI they confirmed it was a tumour.
  3. Tumour markers. Opinion amongst Oncologists differs - some follow them closely, others don’t bother. I have been told that they can be unreliable if followed too closely, but can be useful as a crude measure. For example, during successful treatment your markers can go up, because the tumour is breaking down and releasing proteins into the bloodstream. This would give a ‘false’ reading. I think they are best used as an ongoing measure - one result on its own doesn’t tell you anything.
  4. Don’t know about ‘lesions are not visible’. I can only think of poor Kay and Dawn who were told they had one or two tumours, but when they looked more closely found a number of smaller lesions.
      1. Have been answered already by others who know more. The more I learn, the more I’m getting the impression that the Royal Marsden is the flagship British cancer hospital.
        I hope this helps you. It’s only what I’ve gleaned as I’ve gone along, so I can’t guarantee any of what I’ve said is true, but it’s what I believe to be true!
        All the best,
        Jacquie

HI Manon

Interested to hear your experience at Addenbrookes (I have had my radiotherapy there on different occasions) but go for my chemo in Peterborough. I’ve also got a portacath (which I agree is brilliant!) but I’m NHS. I had the opportunity of going private as I had all my scans prior to my secondary diagnosis via private but when I asked my oncologist which she thought would be better she said to go NHS instead of private.

I agree with you about not having a ‘joined up’ service if you’re private which is a great shame and I remember years ago when I was first diagnosed a friend of mine who was a nurse said to go NHS because of the support I’d receive afterwards. I think it’s what suits you as an individual but definitely having scans (especially MRI) was so much quicker for me private than NHS.

Pinkdove

Hi Nigel

Will add my penny’s worth - don’t know whether it’s worth that much though!

  1. Surgical Second Opinion: would reiterate what Jacquie has said in that you need to find someone who knows as much about cancer as about the liver. The liver specialist I’ve been seeing does a lot of liver resections for people with secondaries from the bowel - much more common procedure for this - and works closely with the different oncologists. Ideally you want that team approach with them sharing their expertise. Despite the lack of success with my op last week, I’ve felt confident about why decisions have been made and why surgery was thought to be the best option for me (even though it turned out not to be an option at all). Usually they will only consider surgery if there is only one (or possibly 2 close) tumours - don’t know whether that is the case with your wife.

  2. Lesions/tumours/spots. My understanding is that a lesion (or spot) on the liver would be any area of damaged/abnormal tissue. This could be a tumour or it could be an area where a tumour has been before it has been shrunk or zapped.

  3. Tumour markers. As Jacquie says, oncs differ hugely in their view of tumour markers. I have to say though that it was a rise in my tumour markers last May that led to my CT scan and the discovery of the secondaries - I had no symptoms at that stage. A friend of mine though has been told categorically by her onc that he doesn’t measure them as by the time they show change, people would have other symptoms. And again as Jacquie says, they can go up even when treatment is being successful so can only ever be used as an indication. There are 3 tumour markers that are looked at for bc and I believe the one most closely associated with liver secondaries is CA 15-3. It is a protein that is shed by the tumour cells - so the theory is the more tumour cells and the more “active” they are, the higher the CA 15-3 reading. Anything under 30 is considered pretty normal (though individuals have different ratings so it’s actually the changes that are more important). Allie’s drop from 900 to 32 is fantastic and must be hugely encouraging. I’ve also been told that by the time you get up towards 100 you are almost certainly talking about metastatic disease - but can’t remember by whom or whether it was something I read somewhere.

  4. “Lesions not visible” would mean that they can’t detect anything any more on a scan. However - as I learnt last week - that doesn’t mean that there is necessarily nothing there. They thought I just had a one largish tumour in my liver which would then have been operable - had PET CT and MRIs that also confirmed this. SUrgeon then also did a laporoscopy which showed nothing and it was only when he opened me up and did an operative ultrasound that the tumours showed up. He has since gone back to the latest MRI knowing now where the tumours are but still can see absolutely nothing on those scans. Obviously lesions that were previously visible on a scan and then were no longer visible, would be good news and indication treatment was working but it doesn’t mean that the disease has gone.

  5. Already answered this one.

  6. Can’t really help with this one - think more than anything you just need to find a team you have faith in and who seem to keep up to date with treatment options. I personally feel (and think there is evidence to support this) that it is better to find somewhere that has a team approach - surgeons and oncs working together.

  7. Private vs NHS - think others have said much of what there is to say. I currently go privately (hubby has medical insurance through work) and that did mean I could get Avastin, a portocath (they are absolutely great) and much quicker treatment. I also always get to see the consultants themselves which reassures me and is good because they now know me as a “real person”. It makes me feel more part of the decision making and as a result gives me some feeling of control. Downside is that I think you might miss out on some of the “joined up” thinking as Manon puts it, in terms of other services, and I have found out about some things only incidentally.

Hope that helps. The only other thing I wanted to say is that I think the waiting to see whether treatments are working etc is almost the hardest thing, so sympathise hugely with waiting for 3 months to see if Tamoxifen is working. However I think the hormonal treatments do take time to begin to work which is why they will want to wait that long.

Do let us know how you both are getting on.

Kay

Manon, I must just say that I know plenty of women attending Addenbrookes who have port-a-caths and as to speed of scans, I often get my results the next day. Perhaps not all hospitals are as efficient but I have nothing but praise for all aspects of treatment I have received there.

Jenny.

Hello ladies,

I’ve been reading your posts and am wondering …is dizziness a symptom of secondary liver cancer? I do have some dizziness sometimes. It actually feels more like the feeling you get in a lift when it stops and your head feels like it has to catch up …if you know what I mean??

I’ve had this type of dizziness for a good while now mind…and before I started the chemo I did have a body scan and although there was something on my lung - (I think they called it a lesion) it was under 10mm and I was told it wasn’t a sign of secondary cancer but something that would be monitored - there was no mention of any spread to my liver.

Initially, I was niaive enough to think that I’d have the chemo/radio therapies and then all would be back to normal. Its now very clear to me that this is not the case at all…this is never going to end is it??

I find all this just terrifying - Lisa :((

Dear All

Thank you all ever so much for all the feedback you have given me. I feel so much better informed and I’ll be passing all of this on to my wife. I’ve mentioned that I’ve been onto these forums and how useful I’ve found them and I’m hopeful she’ll be taking part soon.

Best wishes to you all

Nigel