Now got mets to bones and liver - doomed, depressed and in total panic

Hi all,
First diag Oct 08, neck nodes Oct 2010, recurrence neck nodes Nov 2011.
Just had results of PET scan and I am terrified. Have gone from smug stable (regional) to multiple mets. I only had a completely clear MRI 6 months ago. he was listing all the new sites and I just felt my world caving in. Now have nodule on chest (bone), rib, other side of neck, armpit lymph node and worst of all 10 spots on liver.
When onc said liver, I felt that my death warrant had been signed, sealed and delivered. Constantly feel like I’m going to fall over with fear!! have already had lots of chemo (FEC/Tax, Capecetabine, Vinorelbine, Eribulin), Herceptin is deemed to have failed, cant have lapatinib (bad reaction). feel like I have no options. He doesnt think chemo has worked that well. He says some things wont be available to me because of multiple sites and multiple mets in liver. I know liver is really bad and as I havent responded to treatment really, feel there is just no hope. feel like I missed a step somewhere. Gone from very treatable to crap in a week. so so scared. Have always pulled myself together with each recurrence and clinged to my stable label…but I have nothing to cling too. Have counsellor…but limited use. cant take it away!
Just stunned I can go from clear to so much activity in 6 months and whilst on chemo. Could it be that MRI failed to pick something up back in May ??? It showed a left neck node, but they said not cancerous at the time. Now node in same place is cancer?? Dont get it!!!
I have gorgeous 7 year old boy and lovely husband. Breaking my heart to even look at my boy. Please dont talk about memory boxes - I break down when I think of them. Am bad person I think. Dont want to be a memory, want to be here!
Please help me. I am not back in clinic for 3 weeks. Time for current chemo to get out of body and time for him to discuss options. Will do research, but am scared of what I’m reading. Any advice on questions I should ask, treatments etc?? See there are a few thread on liver - is there one main one? Dont think I have symptoms…have a few from chemo (nausea etc). Have soreness and pain in chest from the lump there and some rib ache a week ago… had thought it was too much playing in the pool on hols especially as pain went away!!! Now I know better.
Sorry…ranting…moaning… feeling sorry for myself…
G xxxxx

I don’t like that I am the first person to come along and respond to your post. The reason I don’t like it is because I just don’t have enough knowledge or experience to be able to help you at all. But I didn’t want you to think that your post was being ignored - I think some people cannot see new threads until someone has replied to the first post.
You are NOT a bad person - and you are still here - it’s not over - please please do not despair.
Hopefully some of the more great ladies will can respond in a more informative way to the questions you have asked.

Like Super Trouper I cant offer any practical advice, just wishing you well.
Hopefully my post will keep your thread fresh and you will get more helpful responses soon xxx
Sending hugs XXXXXX

Hi Gemdancer

I am so sorry to read that you are back to the forums at such a difficult time for you, as always our helpliners will be here for you to listen to your fears and worries and they will be able to guide you regarding questions to ask about options

The lines are open again tomorrow 9-5 and on Saturdays 10-2 on 0808 800 6000

This looks like one of the main liver secondary threads:

http://www.breastcancercare.org.uk/comment/2055919#comment-2055919

Take care

Lucy

G, like supertrouper and nanna I cant offer any practical help as my situation isnt like yours, and you’re right not to even go there with memory boxes, get the full picture before you think about all that, just keep life simple and talk to those who will help rather than those that might be gloomy.
just be gentle with yourself, keep writing it all down, and shout a bit more about getting back to clinic sooner. give yourself permission to feel sorry for yourself, you’re allowed to feel whatever the f**k you want .
sending hugs and hope people who know more will be adding their thoughts
lots of love
anne

Another one who has nothing practical to say, but like Supertrouper says, you are absolutely NOT a bad person, and of course you want to be here as long as you can to enjoy being with your gorgeous son and lovely husband. Please don’t despair, from what you say your onc has not given up, and is actively looking for a ‘what next’ - I really hope he finds something.

A long time ago someone said on another thread that none of us has an ‘expiry date’ tattooed onto our back - that sounds flippant, but it’s true. Prognoses are only ever someone’s ‘best guess’ based on people treated a long time ago, they do not define anybody.

I feel pretty useless here, but am sending you a cyber hug

Dear G,

Sorry that you have had such crappy news. I cant help I am afraid ,but you do need some help. Do you have a mac nurse?
Ringing the BCC helpline helped me when i was in crisis ( think shuts at 8 ).
Are you a member of out secondary group on facebook ? Apologies if you are but I am not good with matching BCC names to real names.
I can’t say that it is a barrel of laughs on there at the moment but there are people in similar situations.

Julie x

Hi Gem,
I’m so sorry to read your message, you must really feel your world is crashing down around your ears. It does sound like it’s all been very quick since 6 months ago - that’s hard to take. At the moment you’re in shock, so just do what feels right for you. If you want to talk to the counsellor then that might help you, if you’d rather, I dunno, watch black and white movies and cry under the duvet, that’s fine too. Three weeks is a horribly long time to wait. I can’t stand it when there’s no plan. I find as soon as I see the onc and there’s a plan in place I feel such enormous relief i almost feel happy, it’s crazy.
There are lots of us on here who have lived for years with liver mets, so please don’t give up hope. i’ve been going for 5 and a half years and been largely well, with liver mets. I won’t deny it, you’ve had a good go at many of the treatments I’ve heard of, but there are others.
It is sooo hard when we look at our children and wonder what will happen. Please treat yourself gently, take all the support and help you can get, from people who are good to be around, and do whatever you need to do to get through this 3 weeks.
Sending you a big hug
J x

So sorry to hear your news. I know the feeling of shock, sorrow, disbelief and fear only too well. I was diagnosed with liver and bone mets, plus suspect chest node, in January 2010. I had 6 cycles of Capecitabine and have been on various hormone therapies (zoladex, letrazole and extamestane). Recent CT scans show no sign of mets in liver and my chest is clear. Not all good news as mets in bones are now progressing so will be back on Capecitabine shortly.
The wait time before treatment plan is horrendous and it is completely natural to feel the way you do. I can’t offer very much in terms of medical information but I am still here and reasonably well nearly 3 years after diagnosis. Please PM me if you have any questions or any moral support.
Sending you a big hug.
Alison x

Oh, Gem! You rant, moan and feel sorry for yourself all you want, just let it all out.

I’m so sorry you’ve had such cr*p news and seemingly out of the blue after a good MRI scan 6 months ago. That’s the trouble with PETs - they can show up so much more than other scans. Of course you’re terrified about what comes next and having to wait for 3 weeks to find out your next step is just torture.

But if you can just keep breathing and putting one foot in front of the other for the next three weeks, things will start to calm down once you can focus on your next tx. During that time, gather as much info as you can manage from others who are going through this, do your research, make a list of your questions, but most importantly, be kind to yourself. You’ve just been blind-sided and you have to work through your emotions and pick yourself back up. Have a duvet day if you need one. Ask someone to have your son for the night if you just need to cry it all out. But try not to focus on the worst case scenario until you’ve spoken to your onc and know what the plan is. And if you don’t like the plan, ask for a second opinion. Most of all, keep posting here. We understand and we care. Sending gentle hugs and hoping you have better days soon. xx

Hi Gem
I appreciate your honesty in off loading and have certainly been there myself. Yes, this cancer is outrageous and I can’t beleive that it is capable of being so unkind and thoughtless about the value and importance of our childrens lives, our lives and our partners lives. This is all impossible for you to take in, its too big and too much so minimize it to the moment so that your emotions have a chance to settle a little before you see the Consultant . I no longer project to an unknown future because it is too much and I recognise that I need to protect myself. Try and protect yourself too in order that you get through this.

Sending you my love and prayers. I know you will try and stay strong for your little boy . It is fear of the unknown that is so very hard to cope with. Your emotions will be all over the place so maybe a trip to the GP to get some diazepam and sleeping tablets to help you sleep and stay calm. Plan small things for you all to do as a family. What is your little boys name ? Does he understand that Mummy is ill ? Children are often much wiser than their years and it may be good to involve him in your treatment so that he starts to understand what is happening to you.I really do not have any practical advice but hope that some others can let you know a bit more about treatments and what they will do next very soon. Love Tracy xxx

Hi Gemdancer,
So sorry to read of your despair and fear, and like everyone else I feel for you!
I had mets in my liver but I was treated with Radio Frequency Ablation - a heated probe is inserted into the liver tumours and they are microwaved, essentially. A one night’s stay in hospital. I was given a general anaesthetic but some people have it under local, depending, I suppose on the number of mets being dealt with; I had three. Since then I have had some peculiar twinges in my liver area which freak me out but I have just had another follow up PET scan and I am still NED . As I understand it the tumours cannot be too large, if RFA is to be used, but mine were shrunk with chemo first. If they are smallish, distinct mets and not close to the portal vein I UNDERSTAND that RFA can be an option. WORTH ASKING?
I know that mets in the liver sounds terrible BUT the liver does regenerate itself so if the mets can be disposed of the liver will regrow to fill the gap. I have been NED for about 8 months. I know that is not a very long time, but I have been told that if more mets develop in my liver then ,subject to them not falling foul of the above prerequisites, I could have RFA again. AND, as Jacksy says, people can live for some considerable while with liver mets.
If no one has talked to you about a treatment plan, and no one has mentioned RFA would you be able to contact your oncologist to talk about this option? I think it might be wise, if you can. If your mets have only just been found they might be suitable sized for RFA.
I hope this helps, rather than complicates things.I really wish you well. If you wish to ask anything about RFA I will do my very best to answer your questions.
Take good care of yourself. I will be thinking of you.
Verity x

Gemdancer, I’m really sorry, and the only thing I can suggest is to ask your oncologist to do a biopsy of your chest or neck nodes, as cancer can change it’s receptor (in fact it’s very common, and happened to me). I’m gueesing you were originally Her2 receptive, and ER negative, but if your cancer has become ER positive, it might be that endocrine therapy would help. It’s worth considering maybe.

Dear Gemdancer, such a shock to read this - it’s so difficult to be the bearer of one’s own bad news.
I myself have “been there” - had dx of multiple liver mets, totally unexpectedly, in summer 2009… but I’m still here, thankfully.
A big cyber hug for you if I may, and hoping that you will have all the support that you need … and above all, that from the recently developed treatments available, one of them will give you good time (and good times) with your family. It’s amazing that the liver can regenerate itself - even with multiple mets, one’s liver function can improve greatly with treatment.
Thread for liver mets people is here,
breastcancercare.org.uk/community/forums/living-secondary-breast-cancer/thread-bc-liver-secondaries
This is a thread I started recently, it has a few posts and also a link to a long, earlier, thread.

Hi Gemdancer, sorry to hear your news, don’t have a lot to add to what the other ladies have said, I have liver secondaries and am not suitable for RFA but I am still here after two years and am learning to cope with life living from scan to scan. Thinking of you x

ask your onc about everolimus and examastane hope he can give you something i was on a previous site that as now shut down and there was a lady on capcitebine and examastne she had it in liver for 8 years and is still going it is so frightening this isease as no one knows i look for cures every day in the hope
big hug
kay

Gemdancer- i just wish i could wave a magic wand and make this go away for you. I have a boy of 3 and live in constant fear of not being here for him- in fact last night i was in floods of tears in bed worrying about the future. You are not alone x

Hi all,
Thanksfor all your support and allowing me to share my fear! I WIll follow up on some of yr links and advice. Have seen BCN today and she is trying to get me to see onc next week. As faR as i know am still er pos but hormones have done nothing for me. Am starting to get bone pain which is scary as it makes it all very real. Think i have too many mets in liver for some treatment. But hearing some of your stories has helped me to have some hope. When i heard liver, i just thought it was all over!
Am cuddling my 7 year old extra hard! Just had a birthday and despite all this crap, my boys made it very special!
Think i will be posting a lot more from now on. It can be so lonely in cancer land!
G xxx