Anyone else with liver secondaries?

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341

Hi Psyche

as Cathy says it sounds like your mum is ‘triple negative’ which means that she can’t have hormone treatments or herceptin.

She should have a scan after her chemotherapy finishes to see what impact it has had on her tumours. If her disease is stable she would then be closely monitored, and if the tumours start to grow again she would then have further chemotherapy options which include: taxotere, taxol, xeloda (the oral one), vinorilbine, gemcitabine, carboplatin/cisplatin. A few people are getting another drug called avastin for advanced breast cancer but this drug is still being reserached for use in breast cancer and some trials have not shown it to be effective.

I do hope the chemo your mum has had keeps her stable for a while.

(I don’t have liver mets, but I am triple negative, and am now on my 4th lot of chemo drugs for a regional recurrence.)

You might find it helpful to call the BCC helpline to talk all this through some more.

best wishes

Jane

342

Hi Everyone

Well just to let you know that have had an email from Kays Husband, David, and this is what he said, unfortunately not really the news we wanted to hear:

Just an quick e’mail to let you know that Kay went to surgery this afternoon, and is fine, but that the result was not what we had hoped for. When he examined Kay’s liver the surgeon found that there were other small nodules of disease in different areas - and he couldn’t get them all. That meant that continuing the surgery was not an option and he left the liver intact. So I guess we are on to Plan B - further chemotherapy as and when.

They expect Kay to come out of the high dependency unit tomorrow evening or Friday morning, and I’ll pass on any more news when I get it.

Will email him bac and send all of our love to Kay. Sure she is disppointed though, and am gonna try and see her tomorrow if I can.

Catch up with you all later.

Love
Dawn
xx

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Hi Dawn

Thanks for letting us know - OMG I am so gutted for Kay and David. I dont know what to say!
Please send my love and best wishes if you get to see her tomorrow.

Also, Good Luck to yourself for tomorrow

Love Anne xx

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Hi Dawn,
Oh! how awful for Kay & her family, please give her a big hug from me if you see her tomorrow and good luck for yourself when you see the Prof tomorrow.
Take care,
Allie

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Hi KatharineM and JaneRA,

Thanks very much for your comments. It gives me hope that more can be done for Mum. We are going to insist that she has an appointment with her regular onc, instead of being fobbed off with somebody who hasn’t been involved with her at all.

Take care,

Psyche

346

Dawn

Thanks for letting us know, I am shocked and upset for her, I am so so sorry to hear this…this disease seems to have some horrible trick up its sleeve at every turn…damn . Please send her my best wishes, and I will be thinking of you as well

love
Cathy

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Thanks Dawn for letting us know about Kay, I feel so sorry for her and her husband and hope they are bearing up under the strain. What a real shame, please send her my love.

I hope your appointment went well today.

Lots of love to everyone else also, take care.

Love, Jen xxx

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All, I have read attached and my thoughts are with you all.

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Dear All,
My wife has just been diagnosed with secondary Breast cancer in the liver and I am in turmoil. About 9 months (April 2007 I think) ago she found what everyone thought was a small lump. Her GP was surprised she’d even found it. She was referred to see a specialist who thought it would be OK but did a biopsy anyway. The biopsy was showed up cancer cells but still everyone thought it had been caught early. A Mastectomy and removal of 4 lymph nodes showed that the tumour was bigger than thought and the lymph nodes were not clear. The rest of the lymph nodes were removed (20 odd) and these were all clear so we thought we’d established a starting point. Chemo followed (can’t remember which type - think it was FEC or “EC” x 4 and Taxoterre x 3 (should have been 4 but my wife was wiped out at end of it and they said that she’d been through enough, especially as only 12 months ago they would “only” do 6 cycles of the first chemo drug). Then radiotherapy was to follow and we hoped that that would give us some respite however when doing a routine scan pre the radiotherapy they found something they didn’t like the look of on the liver!! A CT scan has shown that there is secondary breast cancer in the liver. They think it may have been there at the start but they don’t know because they didn’t scan at the time (We wanted an MRI scan but they said to wait until after radiotheraphy) - Why didn’t they scan? Would it have made any difference? Now we’ve lost a bit of confidence in our specialists. (They say that had they found this at the time then they would have followed same treatment so perhaps I’m being unfair it’s just that you’re given hope and then they find something else). My wife is now on Tamoxifen as the cancer is oestrogen positive (I think is the term). Now we’re advised to wait 3 months to see if the secondary tumour grows or not!! 3 months is a long time - should I seek a second opinion? Has anyone had a similar experience. I’m advised there’s not much that can be done once a tumour is in the liver - is that correct? My world (which was perfect) has been turned upside down!! Any advice or comments would be much appreciated. We have 2 children, 9 and nearly 5 - it’s thinking of the children that really upsets us!!
My best wishes to all of you.
Nigel

350

Oh cr*p, that’s not what we wanted to hear. Poor Kay, it’s so disappointing. What a total drag - to get that far and then find out. I can only imagine how she felt whan she woke up to be told that - it’ll take her a while to get over it emotionally as well as physically.
Dawn - been thinking about you today. Hope you got on well with the Prof and all is clear for you to go ahead. You must feel knocked back by Kay’s news, but hon, everyone’s different and yours might be a great success. Don’t be put off, you so wanted to do this.
Cathy - thanks for your understanding message after my results. I feel a lot better now. But Kay’s news has quite a dampening effect on us all, I guess.
Welcome to Psyche, and love to you all.
Hope you have something nice to do this weekend
Jacquiexx

351

Dear Nigel

Welcome to the forums, I am sorry to read that your wife has recently been diagnosed with liver secondaries and just wanted to let you know of some of the support we can offer which may help you both.

We have a one hour secondary ‘Live chat’ on Tuesday evenings where you can ‘chat’ to others who are experiencing similar feelings and treatments so will have an understanding of any concerns you have. You are both also welcome to contact our confidential helpline on 0808 800 6000 for a chat to one of our specialist nurses for one to one support, advice and information and a ‘listening ear’.

The following links will take you to booklets written by Breast Cancer Care which contain information about a secondary diagnosis, treatments and support available and one which is specifically about secondary liver cancer:

breastcancercare.org.uk/docs/sbc_sept_2007_web_final_0.pdf

breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_liver_0.pdf

The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes

Lucy
Breast Cancer Care

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Hi Everyone

Well where shall I start …

Went to Guildford today and got there 15 mins early, so decided to pop in and see Kay. I have to say, she did look quite well, although had a few tubes flying around. She is obviously gutted and devastated about the operation, and even though the Professor had warned her it was a possibility, she said to be so close to having it done successfully, and at the last hurdle for it all to go wrong, was such a devastating blow and emotionally hard too. I told her that you all sent your love and were thinking about her too. Not sure when she will be out, as she has to be up and about and able to climb stairs, and so far she has only been out of bed once. I was going to go back and see her after my visit to the Prof, as only had 10mins with her but …

I am not too happy tonight, so not very chatty, as went to see Liver Specialist today, and my liver not operable. He showed me my scans from July, and there were numerous lesions on right side of liver and then what looked like one on left, but right near main blood artery, so no good. If left had been clear then could have maybe chopped off the right lobe. But for some reason he did not receive the latest scans from December, so gonna get them sent to him and he is going to have a look and write to me with the results. So feeling sory for myself and depressed, so off to drown my sorrows in a glass or two of wine. Am absolutely gutted really, one about seeing all the lesions there, as thought I only had 2, and also that it is not operable, although I have no doubt that I would probably have ended up in the same boat as Kay. So now gotta pick myself up and start again. Although the Professor did say he had a patient that was comparable to me, and is now 8 years down the line … so heres hoping …

Kay is looking for another meet and lots of hugs when she is fully recovered, so we shall get something sorted when she is back on line.

Nigel, so sorry to hear about your wife. I have to say that waiting 3 months is awful and i for one would not accept it. I finishd chemo on 21 Nov (had 3 FEC and 3 Tax), and was told that I would not get Herceptin til new year. So I wrote my onc a letter and told him that I could not go through christmas and new year on no treatment and I started herceptin on 20 december. I know that everyone’s situation is different though, but leaving it 3 months to see if the tumour grows sounds absurd to me. I hope that your wife is coping as well as she can. It is hard but these forums are so amazing and the support is brilliant. I am 39, was dx in July last year with bc and liver mets. I have 2 children one is 4 and the other is 1. They will keep both of you going I promise and give you so much to fight for. My two don’t give me a moments peace, so I have no time to dwell on things and they make me laugh and smile and just make all the treatment worthwhile.

Anyway am rambling now, so off to drink my wine.

I hope that everyone is OK tonight, and I will catchup with you all over the weekend.

Lots of Love
Dawn
xx

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Awwww Dawn

I am absolutely bloody hopeless with words!!! Absolutely massive hugs to you!!
I cant imagine how you are feeling right now…but the other patient 8 years down the line gives good hope.

Wine sales must be boosted tonight!! I’ve just been on the baby site that I chat on and they’re all at it as well. I havent told them my situation and they think that they’ve got problems!!! They dont know one half!!

I too will start rambling if I write any more and I’ll end up blubbing - so, will catch up with you soon, with better words.

Take care

with love

Anne xx

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Dear Nigel,

I am so sorry to read about your wife’s bad news. I hope the pair of you find help and support here on this forum.

I would just like to add that, they will probably be waiting for three months to give the Tamoxifen time to take effect. If after three months, the tumours have grown then they will know that Tamoxifen will not work in her case. They are unlikely to see results in a shorter time span. I was given Tamoxifen after my first course of chemo. After three months scans showed stable disease, after six months they showed progression and I was onto my next course of chemo. Not all ER+ cancers respond to hormonals and at present, the only way to find out which do is by trial and error. I guess your wife is Her2- otherwise she would probably have been offered Herceptin. I was diagnosed with BC and liver mets together, over two and a half years back and am doing absolutely fine. I hope your wife will do the same once the dust settles.

Jenny.

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Thanks Jenny. You are right I suppose, they need to give it time to see if Tamoxifen takes effect. I do wish they’d taken a scan at start as then we’d have had some idea as to whether this secondary was there from the outset (I’ve noted other threads on this subject) and whether it had grown or reduced etc - Having only just completed chemo which we were told would deal with any cancers that may have left the primary we were not expecting this. We are learning to ask more questions and be inquisitive/research as much as we can.

Dawn, thanks for your feedback.

Take care

Nigel

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Oh Dawn

what can i say…I am disappointed for you and sad…I thought of you going down there and seeing Kay. I am sorry, this disease is such a bastard I am glad that you managed to see Kay and pass on our best wishes and our support to her. Definitely when she is up and around we should have another meet up.

…I don’t think I will be following you down there as I know that I have got lots of little spots on my liver, but I don’t actually have the courage to ask how many or where, So I think I know what you mean about actually seeing them there. I am glad the Prof told you about the person 8 years down the line, there are these stories and it does happen, so hearing about them gives us all a little hope,

Hope you have a good weekend with the Kids. I had two glasses of champagne last night, thought what the hell, so there was definitely a nice blip for the drink industry.

Nigel - I have replied on the other thread.

love
Cathy

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Oh Dawn,
Not the news you wanted and I’m so very sorry…I can only imagine how you must be feeling.
Got no words of comfort really just ((((hugs)))))
Thinking of you.
Love
Claire x

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Hi Dawn,
What a bl**dy horrible thing to happen. I’m very sorry to hear your news, along with Kay & Tracy its not been a good week for the “Liver birds”. I’m like Cathy numerous little ones and too scared to ask too. Nice to hear about the lady 8 yrs down the line and we also have Pinkdove to aspire to.
Take care and give your little uns big hugs,
Allie

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Hi Dawn

Sorry, I’m no good with words, but send you lots of love and cuddles. What can I say, except I feel so sorry for you, especially as you were expecting to hear good news from Kay as well. I hope you manage to have a decent weekend, no doubt your children will keep you on the ball.

Take good care of yourself.

Loadsa luv n stuff,
Jen xxxxxxxxx

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Hi Everyone,
Oh Dawn, I’m so disappointed for you. What a b*gger. I just don’t know what to say. I suppose the only consolation is that they were able to tell before you got all psyched up and went in for surgery. But it’s no consolation at all. Is resection/RFA going to work for anyone?! It has been a bad week for us, as Allie says. (I call us the liver birds too!)
I hope you feel a bit better today, having slept on it, and hope you’re enjoying your children this weekend. Big hugs coming your way.
Nigel - hello. I answered on the other thread. We must have been posting at the same time yesterday on this thread as I didnt see yours till I came back on today.
I’m quite similar to your wife, diagnosed in March 07, the only difference being that they found my liver tumour at the beginning, and hers at the end of treatment. As somebody said earlier, the treatment is just the same, as, even though it’s in the liver, it is still breast cancer cells, so they respond in the same way as the breast cells. I started on FEC then had taxol. I had a scan in January just after chemo finished, and before starting Tamoxifen. My next scan will be in three months, so it’s the same. I guess it’s the only way they can tell if it’s working. The thing to remember is that they are expecting it to have a positive effect! There is scientific evidence that the cells respond to oestrogen, and that is what they are basing it on. It’s very hard I know, and 3 months seems a heck of a long time when you’ve just been given a ‘terminal’ diagnosis, but as Dawn’s 8-year example shows, people can last for years.
Where do you live and where is your wife being treated? I’m being treated at Mount Vernon Hosp in Northwood, Middx. I live in Herts.
Well, I will love you and leave you all to enjoy your weekends. We’re just having a break while the kids clear away dinner, in between watching the Xmas episode of Dr Who (a bit overdue!!) and playing a Little Britain DVD quiz. It’s not often we’re all in together on a Saturday, now my teenage son has a driving license…
Hugs to everyone, and lets hope next week is better for us all
love Jacquie xx