! am 21/2 years down the line from bilateral Mx and liver mets,Fec reduced the little blighters, then they grew on Tamoxifan so swapped to letrozole, horrendous side effects on that including depression so am now having a break from drugs and having 6 weekly tumour markers and 12 weekly scans until they start growing again then more chemo, I cope quite well during the day, then at night I tend to worry about the time bomb inside me, It is good to read on these forums that ladies are living for longer periods of time with mets and I hold on to that thought, Hope you are able to cope at the moment xx
I'm glad that Julesie picked up that you haven't had any replies as yet, but I am sure there'll be more coming along soon with some much needed support.
Could I suggest that you try our Secondary Live Chat service which runs each Tuesday evening for an hour between 8.30 and 9.30 pm, the session is facilitated by a nurse and a moderator. Here you can 'talk' in real time with others who have a secondary diagnosis and I am sure you will get some good support from the users of the service. I have put for you below the link to Live Chat for you to have a look at.
Thank you so much for your post dm.
Its so good to hear such good news. I have read many of your posts and they have helped me greatly during these first few weeks. Am praying am in the same boat in 5 years time.
Hi dm and thank you so much for posting - good news is always good to hear and to share.
Hope I can be saying the same thing in 5 years time too.
Thought I would have a quick update on here and saw this thread still going strong. It will be 5 years in July since I had my double whammy of breast cancer and liver mets diagnosis at the same time. I have recently had a CT scan which for the fifth time running has shown nothing visible on my liver. I had a cosmetic surgery mastectomy last July after 4 years of asking.
But life is good now. Although always a constant worry and I always fear the worst. I had FEC and taxotere in 2007, then Capcitabine in 2010 (which didn't work for me) and then sept 2010 to feb 2011 weekly paclitaxel for 18 weeks.
Just wanted to share with you all and to say never give up. My kids were 3 years old and 8 months old when I was diagnosed shortly after my 39th birthday. My little boy started full time school last September which I never thought I would see.
Next milestone is to see my daughter start secondary school in 3 years time.
Just got out of hospital AGAIN had to have another drain put in my back (only a small one)as the scare burst open.
I work in the hospital I am being treated in the Sterile Services Department. It can be a physical job but I could make it easier as I am a supervisor. My employer isnt really supportive they are thinking about financial issues at the moment not the care of the staff (caring NHS for you)But I do have full support of all the other staff so will be helped out if needed.
Hope all has gone well with your return to work.
Jennie, I hope you are coming to terms with your secondary diagnosis and are finding the support that you need on here.
The '8 years' lady is Marilyn aka marilf aka the xeloda queen.
Laurie I know what you mean about work taking you out of a 'cancer world' into the normal world. I returning on Wednesday after my WBR, I am not sure I am physically fit enough as I am still a little breathless, but mentally I need some structure to my week. I am also hoping being mentally tired after working will help with my sleep problems.
Hope everyone else on here is having as good a pain-free and worry free day as they can!
Tamoxifen sounds like a good place to start and a CT in 3 months is pretty standard, so you have a treatment plan in place.
What kind of work do you do? Do you physically feel able to work just now, after your surgery? I went back to work 3 weeks after my chemo on a phased return (I'm a nurse specialist so no heavy lifting but lots of walking around the hospital assessing patients) I'm now back up to full time work and feel back to normal. As I think I said, I'm just on Tamoxifen and apart from the frequent hot flushes (wear lots of layers) feel OK. Being at work has taken me out of my very small 'cancer world' (just me and thoughts of this damn disease) and put me back into my normal world where I have other things to think about rather than just myself.
If you're up to it, you could give it a go and see how you feel. Do you think your employers will be supportive?
Hope you get on OK on Thursday.
I have had 2 WLE and then a double proplylactic mx with immediate LD recon. I am still recovering from all this when I got the news. have no other treatment yet but the onc has put me on Tamoxifen and has told me she will rescan in 3 months (I have to see her again on thurs to confirm as I fell to bits at the time). Please let me know how your scan goes. You sound a really strong person I dont know how I am ever going to cope with this.
Thank you Horssie,
For your kind words I pray one day to be as positive as you.
Thank you also AlexD I agree the stats are terrifying. I am going to search the sites for the 8 year lady that is really encouraging.
Wow daisy you will be 4 years soon but what a hell of a journey havent heard of any support groups but am still in shock.
Thanks to everyone even with the support of my fantastic family and friends feel so very alone sometimes. Have thought about going back to work, on half pay soon, it may take my mind off things for a while and maybe make me sleep better what do you all think?
Sorry to hear your news, but there are some good news stories and thanks to new chemos, there are a lot the onc's can try.
I had suspicion of secondary liver mets only 18 months after my primary diagnosis in 2006 (grade 1, nothing in lymph nodes etc). 3 mets were found and I had them removed with liver resection in 2009. Unfortunately it spread to my bones and last year was back in my liver. It all been controlled by hormone treatment and radiotherapy since 2006, but in April last year I started on chemo (FEC - but could only have 2 of the 3 drugs cos my liver wasn't accepting the dose). The chemo stabilised it but then further probs with liver blood counts in Dec 2011 so had to start quite quickly on Docetaxol. Just had 3rd dose and feel a lot better. They had to reduce that dose as well but besides feeling tired and a rash which comes up in the first week post chemo, I'm coping with it pretty well.
So from diagnosis of liver mets in May 2008, I feel I am having good treatment which is holding it at bay. Should be having mid chemo CT in next week or so to see how things are going.
Do you have a secondary bc support group near you, as we have one and I find it invaluable to share and listen to others, some who have had liver mets longer than me, but are still doing well and being changed onto different chemos when things aren't stable any more.
I am really encouraged listening and hearing about new treatments and yes we all have down days, but my thoughts are that you can go forward and enjoy life. I do enjoy and look forward to little treats in the near future, can be as simple as chatting to or seeing friends or family, going out walking specially if its sunny. This time of year doesn't help with it being grey and cold!
Thinking of you and sending love and lots of good thoughts for you
Sorry to hear your news. Receiving a diagnosis of metastatic BC is always devastating. I remember only too well the words 'we can't cure you' he also went onto say that they could 'treat effectively'. I have hung onto the treat effectively words and this has given me hope. I was diagnosed with secondary BC in 2008 when I was 42. I am now 46.
There are lots of ladies on this site who are living full and active lives with liver mets. It is not possible to predict how long a person will live with mets and the stats are unhelpful as they are often quite old and relate to people who have died. I have adopted the philosophy that its better to anecdotaly alive than statistically dead. One lady on this site has had liver and bone mets for 8 years.
There are lots of chemo's hormonals and targeted therapies available. My onc says that he likes to line up his bullets.
This site is supportive and full of useful information.
Hi Jennie, When I was diagnosed I was in a very dark place for about 5 weeks, then, gradually after listening to healthcare professionals and seeking advice and help from this excellent form you get to realise that it is NOT the death sentence you may think it is. My Oncologists treat secondary cancer like a chronic disease, like diabetes or asthma. It is not curable but can be treatable.
I have 3 x FAC then a ct scan showed the two tumours disapeared altogether, another 3 FAC another CT scan and all you can now see is the site where the two tumours were. I am now on tamoxifen and have a CT scan every 3 months to check for any progression. If and when any more tumours appear then my onc will treat it. We can have more chemo, have a liver ablation ( radiotherapy to zap it) but of surgery..I have cyberknife in my hospital and told I can have that if and when appropriate.
My oncologists plans on me being a pain in the bum to him for a long time yet! So...liver mets is NOT the end of it all. I have far too much living to do before I keel over. I have 3 children and husband ( my forth child!) and am far too busy to give in to this.
Good luck for your treatment, message me if necessary, and look forward to the future..
Sorry you have found yourself here but welcome.
Being told you have mets is terrifying. My own experience is that I was diagnosed following my first screening mammography aged 49 last June. After being told I would have an MX and that it had probably been caught early, I was then told it had spread to my liver, lung, lymph and bones and all this with no lump to feel or no symptoms. I also have a 14 year old son (and 12 year old daughter) and know the fear you are experiencing.
Since diagnosis, I have had chemotherapy including FEC x3 but unfortunately had some liver progression on this. I then had TAX x3 which I finished in November. I went back to work in December and am back to my 'normal' self. Currently on Tamoxifen (do you know your hormone and HER 2 status?) and due to have another scan next month to see how things are going.
In myself I feel well and apart from the hair, brows and lashes (none!) you wouldn't know to look at me that anything is wrong.
The emotional impact is huge, however, 6/7 months down the line, I am learning to live with it; it's not the first thing I think of when I wake up in the morning or the last thing I think of at night. It's just there in the mix. I've gone from having bad days to bad minutes. For example, yesterday we were visiting my step daughter in London and took the kids down to the South Bank to skateboard. Walking back, I suddenly thought of how they would be able to come back there with their kids one day and that I wouldn't be around to see it and burst into tears for a minute or so. Then I just gathered myself, reminded myself of how well I was feeling and how much I was enjoying being with them now and focused on something else. It's not easy but you will find a way of coping.
There are more women living longer with mets as new treatments come around. There is a lady here on the boards with liver mets who has been around more more than 5 years.
I know its difficult but my best advice is to try to find a way to live in the moment.
I would talk to your GP to see about getting something to help you sleep (e.g. Zopiclone 3.75mg) and perhaps something like a low dose of lorazepam to help you through the acute anxiety.
I hope you'll come back to the boards which are incredibly informative and supportive. Please feel free to PM me (personal message) if you want a rant/chat/advice.
I am sorry to read your news, in addition to the support you will have here please feel free to call our helpliners where you can talk your fears through with someone in confidence, the lines are open 9-5 Mon-Fri and Sat 9-2 on 0808 800 6000
BCC can offer you further secondary information and support and you can read more here:
Went to see my onc on Thursday expecting a date to start chemo. She informed me the cancer had spread to my liver and was no longer curable. I am so scare I have a 14 year old son his dad doesnt really bother with him and we lost his older brother 7 years ago. I have read a few things on these forums and people dont seem to survive much beyond 2 years I cant leave my son and OH now they need me I need to see them grow old is there any good news out there havent stopped crying and hardly slept a wink sice I was told,
a very terrified, jennie
Jacksy what a great encouraging post. Shows us it can go well if things turn bad.
I wish you many more years with effective treatment.
Lots of love Christine xx
Thankyou to jacky as so good to hear of someone doing so well.
I was diag with sec bc in liver June 2010 and had chemo; EC. I had liver ablation but came back and since had paclitaxol and now carboplatin. Has spread elsewhere but chemo keeping under control. Hoping capecitabine works as well for me as mrs blue as think is next chemo.
I'm hoping for time off first. Has anyone got triple negative disease as that is what I have.
Inspiring to hear others living with secondaries as I have 4 kids, youngest 19 months and 3 and desperately want more time which I am getting. Main side effects are tiredness.
Thanks for your inspiring post. I was diagnosed with bone and liver mets nearly 3.5 years ago (2008). I am also on Herceptin and Tamoxifen and feel well.
"Always encouraging to hear of liver mets women getting more than a couple of years"
Thanks for popping back to post the good news. Always encouraging to hear of liver mets women getting more than a couple of years (which is what my first onc told me I'd be lucky to get). I ditched him!
Hope you get to do lots more of the things that you thought you wouldn't be around for!
Jacksy - thrilled to see you here again and to hear you're doing well - you started this thread almost 4½ years ago! x
Just a quick pop in to tell you I'm still alive!! and doing well. It'll be 5 years since diagnosis in March (primary and liver secondaries. I'm still on herceptin and tamoxifen and keeping pretty fit, working and generally getting on with life. Have seen eldest son leave home and get engaged! middle one leave for uni and youngest start at secondary school - all things I didn't expect to get to see.
Hope everyone's keeping each other's spirits up - this site was so important to me when I was in the thick of it all, and this thread was a lifeline. God bless
Thanks Val, we're just in the waiting room. My mum is very quiet and shy, this morning she said to me 'I don't think the doctor needs any help from you' so we've agreed I won't ask anything until she's given us all the information, as you suggested really.
I'll update you when we're out.
Hi Julie, My suggestion is to write down a list of all the questions you have before you go. BUT then when you go in, just listen to what the doctor has to say.....THEN look at your notes to see if the doctor hasn't covered anything that is worrying you both. That way you will take in all that the doctor tells your Mum, but you can then ask your questions. You can always take notes too remember. I think it is always wise to take someone with you when you go to see a doctor, because sometimes the patient doesn't remember everything. All the best for tomorrow and I hope you sleep well. Love Val
Hi Fran, I don't do anything like that but my sister in law has recently learnt how to meditate and it has helped her so much (I would actually say it's changed her life) I wouldn't mind trying it. To be honest I always thought of myself as a very laid back un-stressed person but now I wonder if I've just always been lucky enough not to have anything worth stressing over.
If anyone has any suggestions for what we should be asking the consultant tomorrow I'd be grateful to hear them. I was going to ask about my mum having one of the more permanent iv access points, is there anything I need to ask specifically about this or will they tell her which one is most suitable for her? I was also going to ask when and how they will monitor whether this treatment is working? How long is the course? If it is working, will she be able to continue on it for longer? If it doesn't work how do they decide what to try next? I can't think of what else to ask but last week I know I had two pages of questions so I think I'm going to come out and remember things I should have asked and then I'll feel like I've let them down.
Thank you for reading, I hope you've had a nice weekend.
Take care this weekend Julie - I think waiting for appointments and result can be very hard on both patients and families so am glad you've an appointment coming up so soon. I've had liver secondaries, along with bone ones, for one year now and have come to feel more confident about living with the disease and hopeful about the range of treatments available that I've often learnt about through these forums. the initial months after the diagnosis are tricky but I hope you get reassurance from these forums and the oncologist.
Thinking of you in your efforts to support your mother - do you do anything like yoga deep breathing to help you to keep calm through this stressful time?
Do keep in touch
Thank you Val and Sue for your kind replies; knowing that people care enough to write makes me feel very emotional but I obviously do feel a bit more emotional at the moment anyway.
We are going to Guy's on Monday to see the oncologist and discuss the treatment plan so hopefully when that's underway we'll be able to relax a little bit. My mum does seem to feel better when she sees her doctor, she really likes her and she has been very ill so hopefully she'll improve when the treatment is underway.
Not long to wait now, I'll let you know what treatment they decide on.
Thank you again, have a lovely weekend.
Sorry to hear about your mum's diagnosis and I hope she gets her treatment plan quickly so that both you and her dont have too much time to worry. I have liver mets which were treated initially with chemo and then the necrotic tissue was resected but everyone is different and treatments differ. Just wanted to reassure you that there are lots of people to talk to and help and def don't panic.. my own daughter had a panic attack after my last PET scan and we she had to be taken by ambulance to emergency and given oxygen and an Atarax tablet to slow down her heart rate!! Dont want this to happen to you. She's only 22 and cardiologist has just made her wear the 24 hour thingy, but she knows herself it's anxiety. I too have trouble with my arm and luckily they put in a permanent chest cannula before my chemo and i'm sure the medics will find a way that suits. Sending you love and best wishes Sue x
Dear mumsgirl, I am sorry to read that your Mum has liver mets and wish her all the best for the biopsy tomorrow. I don't have liver mets myself so am not sure what treatment your Mum will be offered. I have had bone mets for over 12 years now and am still enjoying life although I do get very tired at times. Keep in touch and let us know how YOU and your Mum are doing. One day at a time....you will get there. Val
Hi, my mum was diagnosed with liver secondaries on Tuesday, she is having a biopsy tomorrow and then will meet her oncologist on Monday to decide on treatment. Can anyone tell me if the initial treatment is usually iv chemo? The doctor did say it probably would be chemo, my mum had 3x fec and 3 x tax for her primary almost 3 years ago. They can only use one arm because she has lymphodema in the other one, they have such trouble getting blood or lines in that her arm is in a horrible state now and very painful.
I have read all of this thread and it has really helped prepare me and given me valuable knowledge that has helped all of us come to terms with this - thank you all for sharing.
I told my mum that there were people on here still living their lives over seven years after their secondary diagnosis, she mentioned this to the oncologist and she said she has a patient who is eleven years post liver secondary diagnosis. This is all still a shock but these accounts do help when I feel like I'm going to have a panic attack.
I hope you're all well.
Just wondered how things were for you as I have not seen you post as I have been out of the country. How are you doing? Val
Hi May i join in with you all. I am really struggling with things. I have multiple secondaries in my liver and trying to stay upbeat for my children and husband. I am pleased to say after having a second opinion from The Royal Marsden that they have agreed to try chemo. First one went in monday. This is all hapening so quickly. I only finished my radiotherapy in january. My hair is beginning to grow back!!! My head is spinning. I told my children last night that they have found some cancer in my liver and have zapped me straight away with the chemo. But i havent told them that we are going to have to sell and move. I need to get them nearer my sister. Why is life so ......blooming difficult.!!!!