Liver Secondaries

[DeeUK]

Hi guys,


I used to visit here quite often, after being diagnosed with primary bc when I was 29, in July 2005. But haven't visited for a while.. was trying to get my life back on track.. getting back to work, etc.
But on Wednesday, I had a liver ultrasound, and was diagnosed with liver mets. One 'small' one, and a 10cm one.
I see my oncologist on Wednesday, to talk about what to do next (and talk about having bone, lung, etc scans, I suppose).
I would have been due to have my 11th 3-weekly Herceptin in a couple of weeks. I assume I'll be taken off Herceptin (though I don't really know if I will or not), as it doesn't seem to have worked as an adjuvant treatment. I don't mind admitting I'm absolutely terrified now.
We seem to not be as advanced in treatments in the UK, as in the states either.

I would so much appreciate any advice from anyone.. Anything.. I'd appreciate any advice so much.


Love & hugs,
Dee
xxx

[saleboat]

Hi Dee,

I am really sorry to hear your news. I can imagine you're quite scared, it would only be natural. I don't have a lot of advice for you, but I'm sure there are others on the sites who can be helpful.

The one thing that I would encourage is a biopsy of the site on your liver, just to be sure it is really mets. I know of a young woman in Australia who was teated for liver mets, (she had already been treated for a primary early-stage bc) and it turns out that she never actually had liver mets. The supposed met was a hemangioma and she had a lot of unnecessary treatment.

I'll keep my fingers crossed for you.

Jen

[chrisy]

Hi Dee,

Sorry to hear you got some bad news - just as you were maybe starting to feel you could put breast cancer behind you. I can sure relate to that. Of course you're terrified, who wouldn't be!

Do not lose heart. This is a frightening diagnosis, to be sure, but it is not necessarily an immediate death sentence. There are many treatment options which can work well and for a long time. It's time to put on the armour and gear up for the fight!

You didn't mention details of your original pathology, except I assume Her2+++ as you were getting Herceptin. What about ER/PR? How was this discovered - did you have symptoms?

As for advice...

First, yes you do want to get the full range of tests - bone, brain MRI, and CT or PET to confirm what you're dealing with. Are they even certain this is cancer?
Next, I would strongly suggest you get a biopsy of the liver lesion to determine if it is mets from the breast cancer not a different cancer, which would call for different treatments. Even if it is mets, you want to know the "profile" of the tissue - ER/PR/Her2, etc as this would impact treatment options and may have changed since your original diagnosis.

Depending on what is learned through these tests (if it is confined to the liver) you may be eligible for local treatment - surgical resection or radio-frequency ablation or cryoablation - that is, removal/destruction of the liver tumor directly. There have been several small studies showing long term survival benefit in breast cancer with liver-only mets. It's not standard protocol, but may be an option.

If these options are not viable (size/location of tumor, etc.) there are still conventional (chemo) treatments that can be effective. You may or may not be taken off Herceptin. My onc has said to me that "sometimes there can be renewed synergy when you add chemo and continue Herceptin" So this may be an option.

Or, you may be eligible for a Tykerb trial - there are several out there for patients in whom Herceptin is no longer effective. There are several ladies on the board who are on trials or the early access (EAP) program doing well with Tykerb/Xeloda.

I'm sure you'll get lots more encouragement from others on this board. There are a lot of very smart folks here who can help you take up the fight.

Take care
chris

[Mary Anne in TX]

Hi Dee!

So sorry that you even have to think about all this right now. This sneeky stuff gets us when we least expect it!
If I understand how they work with herceptin (I've been on it since April), they often keep us on it even when it "appears" not to be working.
They might add the drugs that work on the liver mets and allow the combination to shrink those mets away!
I know so little, but I do know that waiting and not knowing is the hardest part of all. While I can't change your circumstances, I know that the people on the site will give you tons of ideas to focus on AND I can pray for you and believe that this too will be momentary and a good life will return!
Lots of love and peace coming your way,
Mary Anne

[lindaw]

Dear Dee


I know this must be frighteneing for you. I have not had any experience with liver mets but read others on the list who have.they seem to stay on herceptin and add something to it.
If you wanted you could do a search and find past posts from liver mets people and their treatment. this may help.

love
lindaw

[karen raines hunt]

HI Dee,

I know you are terrified, but there continue to be more and more treatment options for that nasty Her2!! Hang in there and please know you will be in my thoughts and prayers.

Karen

[DeeUK]

Thanks ladies. I appreciate every word you're saying, so much.

Chrisy, my original pathology in July 2005, was stage 1, 18mm tumour removed by WLE with clear margins. Grade 3, Er- Pr- HER2+++. Lymph node sampling showed no lymph node involvement, but there was extensive vascular invasion.


The liver secondaries were discovered on an ultrasound abdomen scan, after I complained of pain in my right side.
I saw my GP weeks ago about this, and she put it down to a pulled muscle. When I saw my onc last week, for a routine pre-herceptin appointment, I told him about it, and asked for a liver scan, which he agreed to.

As I understand, it's quite unusual to have pain from liver mets, unless they're large enough to be causing pressure on the liver capsule? I'm thinking 10cm is probably plenty big enough to cause this, but I really don't know much about it. Hearing that one is 10cm, absolutely scared the cr*p out of me. Then there's the other 'small' one.
I'm now hoping it hasn't spread anywhere else, but I'm not holding my breath.
I did have bone, liver & lung scans after my primary diagnosis, and all was clear. So I find it very alarming that a 10cm liver met has appeared already.

I'll ask my onc about liver biopsies, although I'm not sure if they're commonly done over here.
As soon as I know what treatment my onc's proposing, I intend to get a second opinion from Prof Smith, at The Royal Marsden. I saw Prof Smith after my primary diagnosis too, and respect his opinions.


I have looked through a few profiles of people who've had liver mets (on this site and elsewhere), and all I seem to be able to find is people saying they were given 2, 6, maybe 10 months to live. I'm afraid I had to give up at that point, to try and keep a bit of sanity. But I'd LOVE to hear of any good survival stories.
I'm just not ready to accept that I'm going to pop off soon. I have no intention of lying down and letting this beat me yet.


I really do appreciate all your help and advice. I can't thank you enough


Dee
xxx

[Barbara H.]

Hi Dee,
Read Steph N.'s report. She developed liver mets soon after she finished her chemo. That was over four years ago and she is currently NED. I also had liver mets over two years ago and am currently NED in the liver. You might have more luck, it's just hard to know. Nevertheless, try to think as positive as you can at this stage because you still have many options you can try.
Best wishes,
Barbara H.

[chrisy]

Dear Dee,

Good for you, insisting on getting the abdominal pain checked out!

I know what you mean about reading the "timelines" given to people. If you read on, tho, many times you will see that people are saying this in the context of "but see, I'm still here!!" Think of each one of these as a survival story!

Try not to pay attention to this sort of stuff - focus on what you need to do to fight this, as I know you are doing already! You're clearly not ready to "check out" and you're doing the right thing by arming yourself with as much info as you can so you can choose the next step.

I know (from experience!) that it's easier said than done to ignore the statistics. Maintaining your sanity is important! But it IS true that some women do well for years and years after being told to "get their affairs in order" and several women on this board have outlived their "expiration date" and are still going strong. Why not YOU!

Nobody knows when someone's time is up!

Take care,
Chris

[StephN]

And don't I KNOW what a punch in the gut such news is, as I had it as well. One thing, I did not have the opportunity to have adjuvent Herceptin, so do not know if this drug would have repressed my fast approaching liver mets or not.

All I know is that once I got on a good chemo combo, those mets (including one about 7cm and one about 6cm, plus too numerous to count) had a fast reaction and shrunk markedly within the first 4 weeks as the scan showed. It was then that I began to feel that I had half a chance to overcome my mets.

I was put on Taxol, Navelbine and Herceptin. I got those drugs in that order as well.

My prayers will be that your next scans do not show anything else, as was the case with me. Only some suspicious shadows in my legs. Liver dominent stage IV is probably the best to have if you have to have mets. Your liver can regenerate as mine did, with NO evidence that it was full of tumors like Swiss cheese at one time.

I also cut out the sugar, caffeine, and went on an organic food diet. Drank a lot of "detox" type teas and took Milk Thistle capsules, which are good for liver cleansing. ALso ate a lot of Shiitake mushrooms and used best grade olive oil. Still do these things as they have become habit now.

Stop feeding the cancer and help your body flush the toxins and chemo debris. I am sure this is not the end for you. Many of us have been told we'll not likely live out the year (that gave me about 10-11 months), but here I am FIVE years later come January. NED.

P.S. At the time of my liver mets, I could not find good survival numbers, but decided to write a new chapter in that regard.