I was dx with mets to liver and lungs this week. Finished my treatment for primary BC only six months ago (Oct, 08). To say I am in a complete and utter mess is an understatement - I have been crying constantly since I found out and don’t even want to get out of bed as I cannot see the point. I see my Onc on Monday, but already I just feel like giving up. It was the worse news possible and I can’t believe it is in two major organs. I have a 4 year old daughter and just don’t know how I am going to get through the next few weeks. How do you cope? How do you try to live your life? I have absolutely no idea. Already, I feel like a freak, so different from everyone else. Please can someone help !!!
Hi doylej,
I just want to say how sorry I am to have to welcome someone new to these boards and I understand how totally devastating a secondary diagnosis is. You will find much knowledge, friendship and support from the women on these boards.
I was diagnosed with liver mets from the start, almost 4 years ago. My daughter was then almost 4 and like you, I didn’t know how I would carry on. Well, I have been on treatment (chemo mostly) since then, life is good, my daughter will be 8 in a few months time. I hope to be around to tell the tale for some considerable while yet, so my message to you would be: it does become ‘easier’ to cope with, in time. Once you have a treatment plan in place you feel a little more in control of your life again. You do learn to live life pretty much normally, especially when there are children to consider.
I can so relate to what you say about feeling a freak. I see myself as being separated from the ‘normal’ world by a sheet of glass and I just go through the motions from the other side.
I hope you manage to get through the weekend OK before seeing your onc. Always remember there is someone to talk to here, and, we do know you feel…
Jenny
xx
Hello doylej
I am so sorry to hear your news but please do not think about giving up. Although it is really bad news there are lots of ladies on this site who have secondaries and have had them for many years.
I myself was dx with secondaries in 2007 to liver lungs and lymph nodes in stomach and neck. This was at first dx I didn’t have a primary dx. I was told that I only had months but after having 6 FEC and being on Armidex (hormonal treatment for a year) my liver mets have shrunk. the only thing giving me a few problems at the moment is my lung.
I can remember like you crying and crying and I wouldn’t even come on this site because I couldn’t see that anyone got better but after a while you realise that you can live with it and they will sort you out some treatment to help.
I also have young children and know how difficult it is, you may not get many replies over the week-end as it tends to be a bit quieter on here but I am sure you will soon,
take care and let us know how you get on with the oncologist I am sure that they will come up with something
carolinew
Hi doylej,
I’m sorry to hear of your secondary diagnosis but as you will see, you’ve come to the right place for support as your fellow forum users have a wealth of information between them, I’m sure many more will be posting help you through this.
I have put for you below the link to BCC’s resource pack for those with a secondary diagnosis, it’s full of useful information and somewhere for you to keep a record of your treatment etc. To obtain a free copy just follow the link and one will be posted out to you.
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/2
I’ve also put the link to the area of the website that discusses secondary breast cancer.
breastcancercare.org.uk/server/show/nav.25
Unfortunately the helpline is closed now until Monday morning at 9am, but if you feel you need to talk to someone in confidence, then please do give the helpline a call, the staff are here to support you.
Hope this helps. Kind regards,
Jo, Facilitator
doylej,
I am so sorry to read your recent diagnosis and I can totally sympathise and understand how devastating it is. I have liver and bone mets and was diagnosed in november 2007 after a primary in feb 2003. I still can’t believe it and like you I can relate to what you are saying - you feel a bit on the outside, with time that has faded a bit, but not that much! And why wouldn’t you be crying ?? Its such an awful shock, I also think that doctors, nurses and alot of press, charities etc. really minimise the possibility of secondaries.
There is alot of support here on these boards and i have met some of the women who post here, its a great relief when you speak to them as you can by posting, and sometimes we meet up. We talk/write alot about the effect on children.
I hope you get your treatment plan sorted out on monday, suprisingly it does help to start treatment even though you have all the side effects to go with it. do come back on after that and let us know how you get on.
Cathyx
Hi…and like everyone else I’m so sorry you have to join us. I agree with all that’s already been posted here. I was diagnosed with my secondaries nearly 6 years ago…it’s a huge shock, devastating but hang on in there, you’ll find lots of support and friendship here. Lots of help…just shout…Take Care…Love…Belinda…xx
Hi Doylej
I am so sorry you have had this devastating news. It is a terrible shock and you need to allow yourself time to get over the shock and come to terms with your diagnosis. It doesn’t happen overnight but you will be able to see from the postings on here that it does get easier as you learn to adjust.
I have been living with bone mets for two and a half years now and am just waiting now for scan results to see if I have some spread to lymph nodes or chest lining (?) But there are several ladies who have spread to liver and lungs and have been posting on here for some years. Hopefully you will be able to find some comfort and encouragment from their experiences.
We’ll be thinking of you on Monday, let us know how you get on.
Hi doylej
I am so sorry that you’ve had to join us here and totally understand how devastated you are feeling. I was dx’ed with bc and bone mets all in one ‘hit’ just before Xmas 08 and was probably totally numb for around two months - I couldn’t cry, couldn’t even think properly to be honest. I’ve since had a tearful stage and a very angry stage and I think now, four months down the line, I’m just beginning to come to terms with things and realise that there are so many people doing so well with this b****y disease and I fully intend to be one of them. I know you have lung mets not bone mets, but if it’s any encouragement I feel much better than I did in December, and I’m saying that halfway through a course of chemo, so take comfort from the fact that there are some really good treatments out there.
I know it’s horrendous when you have young children, I have two girls of 11 and 12 and I’m a single parent, and to be honest they are the main reason that I absolutely refuse to give up and will take whatever treatment is offered for as long as it’s working as there is no way I can consider anything else so far as they are concerned.
This disease is a total nightmare but it seems there are ways to learn to live with it and hopefully live with it for a very long time.
Take care
Lesley x
Hi Doylej,
welcome to the club we would rather did not exist, we are a very good mix with our disease at different stages. I can only echo what the others have said, it will become more bearable once you have a treatment plan.
I have secs to liver bones and omentum, in May it will be 5 years since diagnoses. My liver has been described as looking like a blue cheese, lots of clusters all over. I have just had a scan printout and some of my clusters have gone!
No one can blame you for being upset and feeling like giving up, these are feelings we all have from time to time.
When you go and see your onc on Monday take a note book and put any questions you have in it. There is so much information to take in and so many questions you may want answering. I am on my second book, but it has been so helpful. My onc rolled his eyes round when he first dealt with me and the dreaded book, he doesn’t bat an eyelid now. In fact he asked me 'when did we decide to ??? It takes me less time than him and the hospital notes.
Good luck for Monday and we will all try to help through this horrible time.
Love Debsxxx
doylej - I’m so sorry to hear your news. It does completely devastate you and your family when you get news like this.
As others have said, you often feel better when you have a treatment plan as then you have something to focus on and feel you can get some of your control back.
My twins were 9 when my secondaries were diagnosed and so my youngest would have been 6. That was in Sept 06 and the oncologist was very bleak then but I have shown them they were wrong and until quite recently was quite well and did fairly normal things.
Look after yourself this weekend and let us know how you get on monday. We will all be thinking about you.
Katex
Hi Doylej
Just to add my support to all the messages you’ve had. I have bone mets, dx a year ago, and am doing well after 6 lots of FEC chemo last year. I hope you get a treatment plan sorted when you see you onc but would imagine this weekend has been pretty horrible for you. I did feel ‘better’ about the whole mets thing once I knew what treatment was going to happen and I hope your onc is able to answer any questions you have and get you on the right track as soon as possible. Ask any questions you like or need to on here - we’re a very well informed group and someone always seems to have some good advice.
Take care
Nicky x
Hi Doylej,
So sorry this is happening to you, it all seems so unfair… it must feel nothing is real anymore and I know you just want to get back to normal life before BC. I was diagnosed about 6 years ago with bone mets and I remember at the time thinking it was the end of my world, but as time goes on, somehow I am not sure how, but you seem to gain some strength from somewhere and get back to living a “sort of” normal life again. I have three lovely boys and for all your family you seem to “get there”. I’m not saying life will ever be the same for you again, but you do begin to start enjoying things again! As the other girls have said once you get your treatment plan sorted out things seem to get a bit more positive and something “kicks in” and you just seem to get on with it all!
All my good wishes and love go out to you and your family.
DebsHx
Hi Doylej
Like everyone else here - sorry you have had to join us - I have liver, lymph and bone mets diagnosed september 2008 - I know how shocked and frozen I felt - and imagine you are still in a state of shock - hard as it is to imagine I think we all find a way through this and get on with things ( with perhaps an inner diaglogue going on) I have good days and down days and they are hard to predict - wishing you well and hoping that oncologist on monday will help answer your questions and give you a plan that you can start treatmnet - let us know how you get on - I found the women on this site so helpful when i started treatment - together we have a lot of info that can help…take care , Jayne x
Hi Doylej,
Am so sorry to see you having to join us on here. But just to let you know that you will get some fab support and advice, and friendship too. I completely understand how totally devastating a secondary diagnosis is and unfortunately I was diagnosed with primary and secondary all at the same time in July 2007.
My daughter was then almost 4 and my son was only 8 months old. Like you, my whole life just collapsed and I felt so alone and very frightened. I didn’t know how I would carry on.
I had chemo from august 07 to november 07 and then started on Herceptin in December 07, which I have been on since. And last scan was stale, after having “spectacular” response to my chemo.
Life has been OK. I think after the shock of my dx and then once my treatment had started, my life started to get back to some normality. I had not choice but to carry on with the “daily routine” etc, for my children, as have no family close by, but have some fab friends. My little girl is 6 this year and my son 3, and I am hoping that I will be around some considerable while yet.
Keep on fighting, and life does become more easier to handle and get on with it. I did find once treatment started and I knew I was fighting back, that it became easier.
I am constantly on the emotional rollercoaster and do find myself in that black hole now and again. But on the majority, it is more good than bad.
I hope you manage to get through the weekend OK before seeing your onc on Monday. Remember there is always someone to talk to here, and, we all know and can relate to how you feel.
Take care and sending lots of love and hugs. Your daughter will help you fight and get through this. Mine did!
Love
Dawn
xx
Dear all,
Words cannot express how grateful I am for all the replies I received to my post. You really are such wonderful kind ladies - your comments have helped me to try and pick myself up and fight. I have to fight, my daughter needs me. I am just finding it really hard to deal with the fact that it has come back in two major organs (liver/lung) - I really cannot see how I am going to survive for very long. The scans show that they have caught it early, but I guess with mets this doesn’t make one iota of difference. I cannot believe I have to go through chemo again - still trying to get over the last lot 4x AC/4x Tax - finished all my treatment in Oct, 08. I am a triple neg lady and didn’t really have a great response to chemo first time round. Do I have any hope that I might live for a little while yet - I just want some extra time with my daughter. I am so scared that my daughter will not remember me - the thought terrorises me. I certainly don’t remember much from when I was 4 years old. Thank you again and love to you all.
Oh Doylej
I too am so scared that my children will not remember me. I have started memory boxes, but not really done much with them, dont really know where to start to be honest, and also the thought of doing them makes me too sad really.
I am just trying to do as much as i can now, holidays, days out etc. Took my daughter ice skating in half term for first time, and making sure as much as i can that they both can swim. My daughter is doing fab, but my little boy, only started in november due to the treatment in 07 and then waiting for my hair to grow back.
It does get easier and you will start to carry on as normal. It is always there in the back of my mind, but I know that I can only do my best and fight as much as I can.
Sorry rambling again, but want you to know that things can improve, and hopefully you will get lots of responses too from others that are triple neg.
Love
Dawn
xx
Hi Doylei
Just to add my comments, and to endorse what the others have said. I am nearly 3 years down the line with my secondary diagnosis , originally just lungs but now more widespread. I have found each diagnosis of further progression a profound shock and it has taken me time to come back up and tears are generally not too far away. I have always felt better mentally once I know what is in store for treatment even though it can hardly rate as a pleasant experience. Everyone on here is so supportive and everyone knows exactly what you are going through as we have all been there. Worries about our children is a common theme no matter how old they are we still worry, mine are teenagers, one hopefully going foo to university in the next few months.
Hope you get a plan sorted out tomorrow, I am off for Taxol number 20!
Love Kathryn
Hello Doylej, I’m another one with children and secondaries. I was diagnosed with secondaries to the bones in July 07 and have since had further spread to the lymph nodes and liver.
I so relate to the freak thing and the concept of a glass wall. I feel very different to everybody else I meet - even though people find it very hard to believe that I am ill. With my hair growing back now after chemo last year and my eyebrows drawn on I look quite normal.
At first, I honestly believed I was going to die imminently. The stats I looked at showed that half of people diagnosed with secondaries die within the first twelve months, and another quarter die in the twelve months after that. I found that so scary. IN fact, I couldn’t even face the world for a few days and took to my bed. I just didn’t want to have to see the sky, the birds and all that again because I felt that the world had chewed me up and spat me out. Yet here I am, coming up to my two year anniversay and now I find it so hard to believe that my dying is going to come any day soon. Although I have given up work, I live a normal life - going out with friends, eating too much, taking the kids to the cinema and theatre etc etc.
Women with secondaries are living longer and treatments have moved on. The chemo I am currently on (xeloda) has very few side effects and might, with luck, hold things stable for a good while - hopefully years.
Time will help you come to terms with this diagnosis. And there is hope out there too - you will find people on here who have far outlived their original prognosis.
As others have said, having a treatment plan also helped for me. I felt more in control - even though I knew I would never be quite in control again.
Deirdre
Hi Doylej
I’m so sorry to read of your diagnosis…so soon after you finished primary treatment. I can remember seeing you post when you were going through primary bc. No wonder you are feeling scared and desperate…it takes a while to get your head around the consequences and the future.
I hope you have a good meeting with our oncologistt. I’m triple negative myself so know that standard treatments for this version of the disease are limited. Basically the options probably will be vinorelbine, capectibine (xeloda) or one of the platinum based chemotherapies…cisplatin or carboplatin. For the future there are a number of early trials going on for a new class of drug called PARP inhibitors.
I don’t have children and can only imagine your desperation at the thought of leaving your little girl at such a young age. There’s a charity called Winston’s Wish which does good work with the families of people diagnosed with advanced cancer. Also if you get a referral to a MacMillan nurse they should be able to help you talk to your daughter at an appropriate time and in way which is meaningful for her age.
Don’t be hard on yourself…you have had a terrrible shock and it will take a while to get you head round everything…but you will find you own way of continuing to live with cancer, even though everything probably feels really bleak right now.
very best wishes
Jane
Hi Doylej
So sorry to hear of your dx and so soon after your initial dx. 
I too recently dx with secondaries to liver and spine - also have one in each lung but they are stable.
I too went into shock and still havent really cried yet and in denile a bit and keep thinking why me? its so unfair.
ALtho since looking on this site at other ladies and their successful treatment and also doing research, see that there are still good treatments to take advantage of. 
so its not over yet!
I hope you had a good appointment on monday, and know a bit more of whats goin to happen next and the options to consider in treatment and feelin more positive about the future.
take care
xxx