i was diagnosed july 07 with breast cancer and 38/40 lymph nodes in my armpit. i have just been diagnosed now with secondary in lypmh nodes in both sides of my neck, into the front of my chest and parts of my lungs. I believe i am started vinorelbine on tuesday. my prognosis isnt good either. statistically i was gievn 12-18 months, but to be quite honest i dont seem to be able to move forward from today. any advise or anyone in the same boat.
Hi Zena!
I can’t really help as I don’t have secondaries - but just wanted to bump this up as I’m sure lots of ladies will come on and offer you help and support.
Best wishes.
Hello zena
I am really sorry that you have had to have this news. My situation is similar to yours I was dx with secondaries straight off March 07 and I have it in lungs,liver and chest nodes like you. I also had a lump in my neck.
I was given 3-4 months to live last year but have had 6 FEC and now on Armidex and Zoladex and I am feeling pretty good. Just had a scan get results next week so I am keeping my fingers crossed.
I can remember feeling that everything was hopeless but there are loads of ladies on hear who have had secondaries a lot longer than me and I ams ure they will be along soon to offer you support
regards CAroline
Dera Zena
I am so sorry to read of your secondary diagnosis. You will be reeling with siock and of course feel hard to ‘move on’ from the shocking and devasting news you have had.
I have a regional recurrence in my neck and chest wall nodes…now quite extensive and have had a lot of chemotherapy since diagnosis in April 2007. My major organs are still NED though a recent chest X ray was bit dodgy about my lungs (CT had shown rads damage).
Vinorilbine is one drug which my tumnours did respond quite well to for a while…hope yours do too. Statistical forecasts of ‘how long’ are alway only statistics…some people live much longer than expected…so much depends on how well your tumours respond to treatment.
What is the er pr and her2 status of yourcancer? I am triple negative so only have chemo options which is scary…but I’m ‘lucky’ in that my cancer is spreading slower than expected (I was originally diagnosed in 2003).
I think what you are probably going through now is one of the hardest things in the world to bear…a shocking taste of what mortality feels like. Take support from whoever and wherever it comes. Counselling has helped me, as has the local MacMillan nurse.
You will somehow learn to manage whatever you have to manage…we all do because we are human and the human spiirt can soar in adversity…but blimey is it hard.
Jane
Hi Zena,
sorry to hear you have diagnosed with secs, it is such a shock and takes you to a place in your mind you really dont want to go. Your emotions will be all over the place so please take advantage of any support that is offered to you.
I have had secs to bones and liver for 4 1/2 years and was told maybe with chemo I would manage an extra 12/18 months as the chemo was going to take 6 months I had to work out whether it would b e worth it, Well I can tell you I am so glad I had the chemo, it bought more time than I had hoped for.
You will get lots of help and advice from the ladies on the forum we are all in a very similar position and most of our fears and frustrations can be shared.
Good luck with your treatment plan.
Love Debsxxx
Hi Jane
I too am triple negative I believe as I cant have herceptin or tamoxifin. My lump was 3mm and grade 3 so very aggresive at the time and only been off chemo for 8 months, so this blighter has been aggressive again. I have everything crossed and hoped for so this chemo works. Thank you for everyones comments - it is very comforting to know there are other people out there in the same place as i am with being a newby on here
Hi Zena,
I’m sorry to hear of your recent diagnosis, and hope that you get lots of support from other users of this site. I have posted below for you the link to BCC’s publication on secondary breast cancer. You can either download a copy or order one on line to be posted out to you free of charge.
breastcancercare.org.uk/content.php?page_id=5258
You may also be interested in joining in with the secondary live chat session which runs on Tuesday evenings 8.30 pm - 9.30 p.m. For more information on live chat I have also posted the link below:
breastcancercare.org.uk/content.php?page_id=6218
I hope some of this is of help to you. Kind regards,
Jo, Facilitator
Sorry to hear your news.
I thought I had high lymph involvement but you were so unlucky having a small lump but lots of lymph involvment. I had 17/24 with cancer in sept 05 after finishing 6 x FEC.
My breathing was never right from diagnosis but it took till sept 06 for my lung secondaries to be discovered despite many tests/scans/etc. I have slightly unusual lung secondaries as mine are in my lymph system in my lungs rather than in my pleura which seems to be the more common type. I also have solid tumours which have all joined up in my lung now.
It was so devastating to be told I had secondaries even though I deep down knew that was probably causing my breathing problems. I was told in Sept 06 I might only live for 3 months but may get to 2 years and as you can see I’m still here but have had to have lots of chemo to get me this far… Actually it was the vineralbine that worked the best for me in the reduction of the size of my secondaries so hopefully you will get good results and have much longer than they have told you.
Just ask any question and we will try to help. Quite often we get lazy and use abbreviations so if you don’t understand just ask. I know I was always asking what things meant when I first strted to use the forums.
I am her2+++ but oestrogen neg so it does feel it limits your options but there again, some women here have not always had a good response to hormonal treatments. You learn as you go on there is not a typical breast cancer patient but we are all very supportive and I’m sure that I would not be here if it was not for the advice and info I’ve gained from these forums, the ask the nurse service and email service so do use those as well.
Thinking of you
Kate
Hi Zena,
So sorry to hear your news. I know how devastating my secondary diagnosis(from routine CT scan) was in Feb of this year. I too had 4 lymph nodes affected in my upper clavicular area and 2 tiny nodules in the lungs but after 8 weeks of taxol/avastin the PET scan in May showed no further evidence of the 4 lymph nodes at all and no active cancer in the tiny nodules in my lungs and it was still clear in July after a further 6 weeks of the same combo. I’ve had another 8 weeks of the same combo and have my next PET scan next week and keeping fingers corssed. I’m hoping for a chemo break at the end of March when I’ll have been on the Avastin a year but if it keeps me well I’ll get through till then.
You go through many different stages but I remember that shock and numbness were the first feelings with me and you just think you’re not going to get through but you do somehow. This is a marvellous site and I’m sure you will find great support on here and people who understand the need to have a good moan whenever you feel like it.
Take care and thinking of you as you start your treatment.
Anne
Hi
Can I just say that we are all individual and ‘statistically’ isnt a word that should be used really, as I find everyone has different results from differing treatments and by staying positive ( i know thats very hard) is the best treatment ever. Like others have repeated above, people can exceed the statistics and I think yes although the doctors and perhaps we ourselves like to know how long we have left the fact is that noone truly knows so dont make yourself worry over the ‘statistical length of life expectancy’ as it can easily be longer!
I have secondaries in lung, spine, chest bone and had a recurrence in my original scar and have been dealing with bc for 5 and half years! I statistically should be worse than I am - but lead a normal healthy life and continue to work 4 days a week - and my oncologist is always amazed by my progress. I appreciate I am fortunate however, but statistically I probably shouldn be as healthy as I am!
So please dont dwell on the word ‘Statistic’ we are individual and who knows how long our future will be, enjoy today and the next and just try and stay positive. 
R x
Hi Zena
I am a little similar to you, though not completely. Original breast cancer Nov 2006, 5cm tumour, 5/20 nodes affected, Grade 3, Triple Neg, now aged 42.
Cancer returned (well, it never went I suppose) in June 2008 in sternum and lymph nodes around it. When I was diagnosed with secondary cancer I was ok, but when chemo finished 2 months ago I had a wobble. As triple neg. no further treatment possible and the Onc. said you have to wait and see what happens next. When pushed she said it would be months rather than years before it grew back. I was ok with that because from reading these forums it is obvious that many women defy the statistics so they do not mean much. I had the wobble becuase I am out of the system for a while, until any further chemo I might have, and initially I thought I would never cope with Waiting and Seeing. But I am, I have a busy husband and 3 busy children and with the various things I do too I have no time to dwell too much. But, of course, it is never far from my mind…you will find you cope, one way or another. I am not sure it is easy too do that but you will.
Ena x
hi ena
wot chemo did u have?
Hi Zena
Originally I had 3 x FEC and 3 x Docetaxol (taxotere). When it spread to breastbone this year I had 6 x Cisplatin/Gemcitibine. The idea was to have Cis/Gem one week, just Gem the second week, then a break for a week, then start the 3 week cycle again. However, because I felt so terrible on it I just managed week one , and not the Gem on it’s own. However, this chemo was very successful for me and now I just have ‘deposits’ left.
Hope that helps
Ena x
Hi Ena
That is brill news. I just hope I can get a chemo that can give me more time and shrink the little blighters.
Lisa x
Hi Zena, I am a lung mettie too with many lymph nodes involved. I was dx with mets in Nov 05 and am PR +, ER -, and Her2 -. I started with hormone injections to shut down my ovaries. This did not stop my tumor growth so they said time for chemo. I live in the USA and was able to have a combo of abraxane and avastin. I did this combo for 6 months and although it was still working my oncologist felt it was time for a break bc these two drugs are a harsh combo. I then got an 11 month break and my tumors were still stable but my lungs were looking congested. I then started on vinorelbine. Vinorelbine has been very kind to me. I have had a few side effects but not many and they seem to come and go. The biggest side effect I have from this drug is muscle cramps. I have been on vinorelbine now for 18 months and my tumors are staying the same which is called being stable. I hope this drug is as kind to you as it has been to me. Funnyface