This is my first post on a forum, so please be gentle with me!
I was dx with Stage IV BC in July, had 6 bouts of chemo and in November had a lumpectomy with reconstruction using muscles from my back. I had a CT scan at the end of my chemo and that showed that all of the mets in my lungs and chest area had melted away. My main lump shrank from over 5cm down to 12mm.
My tumour markers (CA153) are at a normal level and have been for a few months.
At my last appointment I saw two specialists - one (whom I’d never met before) said he had never known lung mets not to return although the other was much more positive. I know which one I’d rather believe!
From reading this forum (& others like it), I can’t find any mention of circumstances such as mine, I am being hopelessly optimistic / naive or is this a real possibility?
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One of the hardest things to accept about a stage 1V diagnosis, is that it will be with you for life. You may have periods when treatment can be suspended, but yes, the first onc was correct. It would be nice to think that it could be otherwise, but raising your hopes falsely would be cruel. However, there are many chemos available which can be tried-and although you will need some form of treatment for life, it may be that it will work well for you for a good while. I was diagnosed with mets to lung in Nov 07-and since then, although they have shrunk at times, they have regrown-and have also been joined with mets to liver and bones. Good luck with the rest of your treatment-and please interpret the second oncs positivity with a degree of caution.
Hi there…and welcome although I’m sorry you have to join us. I have been living well with bone secondaries for over 6 years. I have had years of normal CA15-3 markers. I hope you too have many years of living well. I have always been told my cancer is very treatable but not curable.
x
Hi ladies,
thanks for your responses - I guess you all said what I expected you to say. I have to confess that a small part of me (read a very big part!) will quietly hope for a miracle.
Hi again, I too remain hopeful of long stretches of remission. I feel fortunate to have lived well for this long and hope for more years to come. I do remember reading, just after my diagnosis, of a lady who had attended the Bristol Cancer Centre…(now the Penny Brohn centre) who had been living for over 15 years after her initial diagnosis of bc and lung mets. There is also this story which I find inspiring. news.bbc.co.uk/1/hi/uk/5389426.stm
I’ve been on continuous treatment since 2003 to keep my bone mets inactive. First hormonals and now a chemo, Capecitabine, which I’ve found very doable. I truly have not had a day in bed since my initial diagnosis which was stage 4 from the beginning because I’ve been lucky, so far, to have responded well to my treatments. Some of us and how I wish it was so many more, do respond well to various treatments and manage to live well for long periods, years. Good Luck and Best Wishes…x
Hi Ladies
I’ve read quite alot of threads on here by ladies who have been diagnosed as stage4 at the same time as primary dx.were these dx after op.Lesleyx
I am one who was diagnosed stage4 at the same time as primary (July '05). Most of us did not have surgery, so no, the diagnosis is not usually post op.
Thankyou jennywren for you’re reply,i’m due to have op on 13 feb with pre op assesemnt on 17.I have alot of questions that have gone unanswered( with Doctors )need to have these answered before op.Lesleyxx
Just read the link on your post Belinda - just what I needed today - a little lift! Thanks, you always seem to help me at the right moment xx Debbie xx
I think the problem which lends itself to confusion is the word ‘remission’ - it is my belief that once you’ve hit secondaries there is no such thing. Oncs tend to talk in terms of NED - no evidence of disease - which I think is much clearer. With remission one tends to think it has gone away, when in fact it is just being quiet or - in quiessence - another word they tend to use.
As long as it is ‘quiet’ for a very long time, who cares. I hope yours is.
Hi all,
It’s coming up to exactly 2 years since I was diagnosed with secondaries in both lungs and 4 very active lymph nodes around my collarbone after original primary in 2002 and recurrence on mastectomy scar in 2007.
I had a total of 9 months worth of taxol chemo and avastin from March-November 08 and since November 08 my scans have been showing as No Evidence of Disease and my onc. has mentioned the words a sort of metabolic remission but this apparently does not mean remission in what we think of but just that nothing is showing as active at the moment and certainly there is no sign of the 4 very active affected lymph nodes now but that it will come back but we don’t know where or when.
I was told over a year ago when having to deal with acrimonious divorce proceedings that it was very unlikely I’d be here in 5 years but could be here in 7 as if that was the absolute limit but the truth is my onc. doesn’t know and maybe it’s better that I don’t know while I feel so well.That’s why I just really make the most of every day and do as much as I can despite daily side-effects from Arimidex and Zoladex.
I am delighted to have not been on chemo now for 15 months and am really throwing myself into doing as many pleasant activities and trips and time with friends as possible knowing my health could and will deteriorate at any time. It is really hard to get your head round and I wonder every day if the onc. has perhaps got it wrong but know this is unlikely but just live for the day and will cope with what comes when it comes.
I’m turning 40 a week on Monday and as I was first diagnosed at 32 and thought my life was over and I’m truly elated to be still here and what’s more really able to celebrate with gusto despite losing my marriage,ability to have children and career due to the disease.
I do feel that where there’s life there remains hope and life feels so special at the mo - don’t get me wrong - I wish I could have learned this lesson to value life so much without having the cancer!
I’m certainly learning that it is possible to still get the most out of life despite a terminal diagnosis and to still feel good about yourself as I have previously lost a lot of confidence through 7 years with the disease. I would never have believed even a year ago that I would be preparing myself to strut my stuff proudly in the Breast Cancer Care Wales Fashion Show in Cardiff on 24th Feb. as the only model with secondaries. I’ve been pleased to help get the truth out about my experiences of living with a terminal diagnosis and have had features on me in 2 local newspapers telling it like it is for me with no mention of all clear or the myth of remission for secondaries.
I don’t know what I’d have done without the support of this marvellous site and Breast Cancer Care.
I haven’t posted for a while as such a lot of my cyber friends and our community lost their lives last year and I’ve found it so difficult to feel like posting again.
I know being positive isn’t everyone’s way of coping but it’s helping me so much to have lots of things planned in the imminent future as I know I can’t think too far ahead.
I lost a lot of time feeling very depressed whilst on tamoxifen while thinking the cancer was behind me and worrying about whether the cancer would return and whilst on chemo both in 2003 and 2008 with my husband walking out and just feel that I have no time to lose in sadness although I am able to cry freely now when I need to and have many friends and support networks which helps so much.
Anyway didn’t mean this to be so long but the thread struck a chord with me.
Take care everyone xx
Hi Anne,
I think you speak for a number of us when you say ‘I haven’t posted for a while as such a lot of my cyber friends and our community lost their lives last year and I’ve found it so difficult to feel like posting again.’ I feel exactly the same. 7 friends in one year is just too much. I wrote down all their names for a bereavement service I went to yesterday, and it sounded like the wives of Henry the Eighth (3 Catherines, 2 Janes, etc).
I seem to remember my onc telling me, when I was diagnosed with liver secondaries within a few weeks of primary diagnosis, that ‘we don’t talk in terms of remission any more’. It’s more a case of hoping to be as well as you can for as long as you can. Treatable but not curable. As others have said, there are quite a lot of different options in their ‘toolbox’, which keep many of us well for many years.
I’m approaching my 3-year anniversary of diagnosis,and I really didn’t expect to still be here, certainly not being so fit and well and No Evidence of Disease. I am very thankful.
It does get easier as time passes, and some of the shock wears off and you feel able to plan a little further in advance. I know that I use keeping busy and being involved in other things as an escape from the awful depressing thoughts where cancer can dominate your thinking and rob you of living that life that is oh so precious.
Wishing everyone all the very best
Jacquie xx
Hi Jacksy and Anne
I totally agree with you when you say how hard it is to post now that we have lost so many friends. It seems so quiet now. I have also lost one of my ‘real life’ friends and was with her when she died.I feel almost guilty that I am still here although I am glad I am.
I too am coming up to my 3 year anniversary and really can’t believe I am still here.
It would be really nice if we could all post a bit more to try and fill the gap left by so many of our friends.
Good words both Jacksy and Caroline,
I agree that we should perhaps try and post more to break the silence.I hear many of the "voices"in my head and what they might say to the posts and it has felt a bit wrong to post that I’m actually feeling so good in myself and really am trying to celebrate life at the same time as realising the longer I’m here the less time I’ve got. I feel bittersweet at the big effort I’m making to celebrate my 40th knowing that it is likely to be the only significant big birthday I’ll have although of course every day feels significant now!
xx
There have been many sad deaths over the last few months and it is very understandable that it affects you all in such a way. Our helpline is here to help, both with information and emotionally, so please do call if you would like to talk to someone.
Thanks Poppy for that reminder about the helpline.
I too am finding it very difficult at the moment and am not posting as frequently - though I still read most days. I just miss so many people and the forums feel so quiet without them. I think you are right though, Caroline, that maybe we do just need to post more ourselves. WIll try! Like you Anne, I often hear their “voices” as I read posts - particularly those of the people I actually met face to face. Don’t think you should feel you shouldn’t post though because you are feeling well at the moment - your comments and views and support are just as valid!
Like you, Caroline and Jacksy, I am coming upto my 3 year anniversary of mets. It has been such a rollercoaster and I did not expect to be here now, or to have achieved or done some of the things I have done over the last 3 years. I’m not sure it is getting easier for me though, Jacquie (though nothing can be as hard as the initial dx). Maybe that’s because you have had a period of stability for some time now - I must admit I just feel now that I am running out of options and know that things are progressing (just not how quickly). That is something I am struggling to deal with - perhaps I’ll feel more confident after seeing the onc in 2 weeks.