My mum was originally dx with breast cancer in 2006, HER2+. It has now come back for the third time and today she was told she has liver mets. They said it is small (as liver cancers go) and she will have chemo.
Totally gutted and shocked. I googled it and the phrase ‘typically poor prognosis’ kept coming up.
I would be massively grateful for some positive stories or any general advice.
Thanks.
Hi, sorry to hear about your mum, you must be so worried.
but don’t google, lots of postings are so out of date. Treatment is improving all the time. Also so many reports are based on results from america, they do things differently over there.
If I were you I would ring the help line. They are there for relatives too, they are trained nurses and very knowledgable.
In the meantime if you need any more help with questions about your mum or want to discuss how you are feeling, do pop back on here, every body is kind and willing to listen and help whenever they can
Hi Penguin,
I agree with OAL, don’t take any notice of the info on the net. I am HER2 pos and I was diagnosed with liver and bone mets nearly 3 years ago. I continue to have a full and active life. There are others on this site who have had liver mets for a lot longer than me and they are still going strong.
There are quite a few drugs other than chemo that are effective for treatment of HER2 BC such as herceptin, lapatinib, TDM 1 (Super herceptin currently in trials). There is also a lot of chemo’s that can be used.
Hope this helps.
I’m 31 and have recently been diagnosed with liver mets. I have spent hours online looking for positive stories of people with liver mets. I feel a lot more positive than i did when i was first diagnosed. I know the statistics are so frightening but they are old, so I would advise you not to google. There are plenty of positive stories out there.
hi i’m in the same situation yesterday we found out my mum has liver mets. She was diagnosed in 2009 had a mastectomy chemo and radiotherapy, as 13 out of the 14 lymph nodes were involved. Since then she has been on arimidex and has been doin really well. However she has been ill for the last three weeks with terrible pain under her ribs. The Gp treated her for Pleurisy!! Yesterday she was fed up of feeling unwell and in pain that she returned to the GP for the 4th time, to be rapidly referred up to the hospital with an enlarged liver. After numerouse blood tests xrays and an ultra sound they told us she has liver mets. We are now in limbo till monday when she will see her oncologist to see what happens next.
I have also been sucked in by the draw of ‘google’ and have found the same, all the info is out of date or vague.
I was wondering if anyone know if her liver will ever reduce in size to help reduce her pain, she is on good pain killers but they have there own side effects. Any further info on others experiences would be much appriciated. xxx
Hi all,
Many thanks for taking the time to reply. Your support and encouragement mean a lot :). I have read nearly all 200 pages of the liver mets thread and there are so many inspiring stories.
nic 9876 - sorry to hear your mum is going through the same thing.
My mum saw the oncologist this week and they are hoping to get her on a clinical trial (TDM1). If not she’ll have Herceptin and an anti HER2 drug (but she will on the trial too). She has been feeling sick and tired (liver causing symptoms) but has been told this should reduce when she starts chemo. Hopefully your mum’s liver will reduce in size when she starts treatment and therefore her pain too, but I’m new to this so the other ladies are far better qualified to advise than me!
I don’t know if this helps but I feel much more positive than I did this time last week when we first heard the news - it takes a while to get your head round it.
Good luck with the oncologist on Monday x
hi nic,
so sorry to hear about your mum, must be a blow to you all. I think though that no matter what type of cancer you have and what stage it is everything calms down and feels so much more doable once you sit down and sort out a treatment plan and know exactly what is what. Penguin says she feels better now and hopefully after next monday it will not be quite as terrifying for you.
The help line are there for relatives as well as patients, they are trained in all aspects of diagnosis and treatment and might be able to explain things a bit better for you.
its going to be a long weekend for you and your family,do come back on here if you need more support, everybody wants to help.
Penguin and Oldandlumpy
thankyou for your support. Yes penguin u feeling more positive has helped me hope a little more. Please keep me posted on how your mum gets on.
Someone else has mentioned clinical trials to me also so I just hope there is an option my mum can try. She is being so strong she is amazing. At the mo I don’t know if I want Monday to hurry or not.
Dear Penguin, please try not to worry too much. Easier said than done, I know. I was diagnosed with a single liver met at time of diagnosis, Dec 2010. It was 19mm on the edge of my liver. After 3 sessions of chemo it has disappeared. 2 more ct scans later and they still can’t see it! What u & your mum must remember, it is not all doom & gloom. The other advice is very good from the other ladies, keep smiling and a cyber hug to you both.x
Nic, how did your mum get on Monday? Hope you’re both ok.
Horsie - wow, that’s great news - really encouraging. Long may your effective treatment continue.
Sounds like my mum has a few dodgy areas in her liver but they are all very small. She finds out this Wed if she gets on the trial, it’s looking hopeful. She is suffering with painful lymphodema in her arm at the moment but has been told the chemo will help with that.
Cyper hugs to all! xx
Dear Penquin. Hope (andbit of faith in medcine) is exactly what most of us live by. Your mum is extremely lucky to have support from you and fingers & toes crossed for this trial. If you or your mum ever feel a bit low for whatever reason just remind yourselves how lucky we are. We sre alive, we have hope and we are loved. Xxx
Hi Peguin,
I’m in a similar situation my mum was diagnosed back in 2007 with Breast Cancer and then unfortuantley the horrid cancer returned in her Rib Bones and Liver is December 2010. I know exactly how you feel when you say about the phrase ‘typically poor prognosis’ but please do not focus on the negatives you read on google. If ever you want to chat please message me … there is some encoraging stories on here and everyone is in similar situations so lots of support.
Keep smiling
Love to all
Jenna x
Hi penguin
sorry I haven’t been onto catch up. Mums results were not brill it’s in both liver and baseofspine and ribs. She has started on steroids and weekly chemotherapy which seems to have reduced her liver size. Her blood results r all improving. She just seems over the last week or so to have lost quite a bit of weight, she is eating well . Hope your mum manages to get on a trial, and hope her arm improves. Thinking of you xx
Nic, Sorry your mum’s results weren’t good but it’s great her liver and blood results have been positive. My mum was lucky and got on the TDM-1 trial. Her arm is less swollen already (she had the first chemo 10 days ago) so I’m feeling more positive. She will have CT scans every 6 weeks so I have everythig crossed for a good result.
I don’t know anything about weight loss sorry, could you ask about it at the next chemo session? Maybe others on the forum could offer you some advice.
Jenna, thanks for your lovely message. I hope your mum is doing well with her treatment?
Horsie - you are so right. We must all remember that when we feel low…wise words!
xx
Hi Penguin
I hope mum is doing better. Thought I would let you know that my mets were in the liver when I was diagnosed in March 2003. I had one lot of chemo that only lasted 4 months or so before the mets kicked off again but I was put on a course of Taxotere and Herceptin that shrank the mets back to the point that they can’t be detected (NED). I am still on Herceptin every 3 weeks which is a small price to pay for still being here 8 years later.
All the best
blondie
Hi Blondie,
Wow, that is fantastic! Thank you so much for taking the time to reply, it gives me such hope. Long may your NED continue xxx
Peguin,
How is your Mum getting on with the TDM1 trial? Where is she having treatment? My mum is also on the Marianne Study with is TDM1 and wondered how things where going? Mum’s scans have shown great improvement and are currently remaining stable so fingers crossed this stays this way.
Hope all is good and keep positive
Love to all Jenna x x x
Hello all,
Was just reading the thread and just wanted to share with you this,a lady I know has liver mets and she is on treatment but also she started taking hemp so the next time the liver mets could not be detected at all,for some reason later down the line she stopped taking it when she had her next scan the mets were back,so she started taking it again and sure enough they had shrunk again,it might be coincidence but it might not,she thinks not.
Please look into it first though to make sure it is safe for you or your mum’s to use as I am not a doctor.
Please look into it though I think she was drinking it but I’m not sure. good luck xx caron xx
Hi all, especially the caring and worried daughters 
When I was diagnosed with multiple liver mets in July 2009 a dark tunnel seemed to loom ahead. Since then, I’ve had three different chemo treatments. One shrunk the tumours slightly for a few months; another didn’t work at all for me; and the third one (capecitabine tablets) is working well now.
My bcn told me that there can be good control of liver mets if the right treatment is used… it seems to be “trial and error” but I do hope all those who are worried can find good treatments, and receive help with pain and all the other problems. PS I’m a grandmother…