I received my CT results yesterday and got another clear. I know I am so fortunate and yet I felt so flat after my results! I should be elated, my scan shows my liver as totally clear, NED and all that so I should be on top of the world.
I was diagnosed with secondaries in 2003 (March) in liver and sternum and was at death’s door with weeks to live - not that I was aware of that at the time. Chemo shrank the tumours in my liver but it all kicked off again in December 2003 and I was on Herceptin and Taxotere by Christmas and bald by New Year. Since then every scan has been clear and I am so lucky but this time, after all the awful waiting for results - I felt nothing.
I have tried to rationalise my response and I think there is an element of ‘how long can my luck hold?’ and ‘well that is one scan nearer the terrible time I get a bad result’. I know that this is terribly negative and I know that I will be back to my positive self soon but isn’t this a dreadful disease that it even robs you of your happiness when you get good news.
I feel like a high wire act - elated to be so high and performing so well but always with this nagging certainty that I am going to fall off (eventually)!
I know some of you are going to see me as really ungrateful - and for that I apologise - I must sound really whingey - but my reaction has taken me by surprise and I just wanted to get it off my chest and seeing this written down is, hopefully part of my coping process.
Yours in fear
blondie
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I am so glad you posted. I remember reading a post of yours on a really old thread that popped up in a search (can’t remember what for), and I was hoping to find out if you were still doing well and NED. I am delighted that your news was good, but I also completely understand your reaction.
I have bone mets and am currently stable - maybe even NED after rads - and it is a very odd limbo to be in. It is so difficult to adjust and try and make the best of things as they are - constantly worrying what might be around the corner. It takes constant effort to not just wait for the other shoe to drop.
I hope just writing about it has helped you. I also wonder if part of your reaction was due to all the mental effort you must have put in before the results, preparing yourself in case the news wasn’t as good, and you were just exhausted by it all - I think I would have been.
Anyway, take care - I hope you soon cheer up and you continue to be NED for many years ahead.
Lovely to hear from you.
After good scan results I always feel nothing, just nothing. The doom feeling continues much to the amazement of friends and family.
It has happened so often that I expect to feel nothing. I think maybe it is a combination of things.
The come down from adrenaline fuelled ‘scanxiety’. It is commonly accepted that this causes a physical reaction.
Also the fact that this disease can change so quick. Just because things are ok one minute does not mean that things cannot change…quickly !!
Also, i feel almost like a superstitious belief that (because of the nature of this crappy disease)…that it is almost wrong to celebrate.
These are just my views. Maybe you feel the same, maybe other people have different theories. However, you are not alone xxx
Blondie I so understand what you are saying. I think once we know we have secondaries, whilst it is good to hear that things are stable we cannot escape the fact that we have it and it is going to get worse. The awful things is just not knowing when. I don’t know about you but I find getting good results after scans makes me more aware that it can’t last. I think for both you and me we would have been finished long ago were it not for herceptin. I have found it hard to accept that there will come a time when it stops working for me. We can’t avoid the ups & downs of the emotional rollercoaster, so don’t feel you have to apologise.
hi i too have secondarys and have had clear scans. i know how hard it is because you are afraid to be to happy because when bad news comes it makes the fall even harder. i tend to think in three month periods and when i get a clear scan i say to myself that i can try and be happy for a while now.i try not to think to far ahead just make myself small goals.when people ask at me how i am i always say alright at the moment.dont feel guilty blondie it is really hard to be happy and positive when you aware that ti can be taken from you at any time.
Hi Ladies, phew its not just me then! I tend to be on a high when I get good news and am able to be positive but by the time the next appt is looming the positiveness starts to slip and the fear when I am waiting to go in to see the Onc is always immense. We face this rollercoaster every 3 months or so - its no wonder our emotions can be all over the place ! My next appt is about a months time - am feeling pretty well generally and last time was found to be doing fine with no spread and was even told a small amount of healing had occured in a couple of the bone mets - but that fear will still be there in October as things can change so quickly! Mind you, last weekend I was riding a bike around centerparcs and going down the rapids with my 11 yr old so I take it things must be ok. I take a great deal of comfort from the positive stories on here from ladies with secondaries and long may it continue ! Love to all xx
Hi Blondie,
Am glad to hear your news of another clear scan. I remember meeting you in Surrey 2 years ago and am so pleased you’re still doing so well. I completely understand the flat feeling even after a positive result as you know at some point your luck is going to run out and your analogy of a hire wire act is spot on!
I’ve had NED scans since Nov 08 after 8 months of chemo following my secondary diagnosis in Feb 08 and my next scan is in October so I’ve already started to get jittery! I’ve had such a full,busy summer and been really well but I also think that friends can forget how potentially poorly we really are as one the other day was asking me of my plans for next summer and about something in March. I just can’t think that far ahead - my stomach flips over as I daren’t be quite so optimistic although I’ve been really embracing living for the moment. It is like living with a time bomb and while things are good I can put it a little to the back of my mind but as scans and results approach it brings it all back.
I do find that having lots of small but nice things to look forward to constantly it does help but we need to accept that we’re only human and can’t be positive all the time. It’s such a cruel disease.
Take care xx
Hi Blondie
It’s really good news that you have clear scan results but, as all other other mets gals on here have said it is such a rollercoaster of emotions. We do all build ourselves up for the dreaded results time so it’s not surprising we can all feel nothing/doom/elation - I guess we are all different. I think you are right and I also feel like I’m one scan nearer the one that says my medication has stopped working and that is the bl**dy awful thing about this disease and how we have to live our lives now. As someone else said I hate the way friends plan events for the next year or so and expect us to join in without a care in the world. Outwardly I suppose we look ‘normal’ but we all know the ticking time bomb. Having said that I hope you have picked yourself up, brushed yourself down and can now look towards the next few months without the fear of scan results and, due to them being so good, assume nothing will dramatically change in that time. After I have been lucky to have a good ‘stable’ result I do try to plan a few treats, days out and even holidays now! My OH has had to come round to my way of thinking in 6 month ‘chunks’ ie between scans, during which time I hope I continue to be well enough to do most things, always touching wood of course
Take care Blondie, and everyone else, hope NED continues for a long time yet.
Nicky x
I can so identify with all that’s been written here … Blondie, it definitely isn’t just you! I think it is really hard for us to deal with the ups, downs and stables of this disease. Harder still because so many of us will look absolutely ‘normal’ to anyone else, hence the so oft ‘You look really well’ that we all hear, when we’re feeling anything but normal on the inside. It’s so good to be able to share all these feelings on the forum, especially the negative ones. I just couldn’t talk to my OH about this.
Thank you all for your support. It made me feel so much better to hear from others that I was not unique in feeling my clear scan was such a ‘let down’.
I am so much more positive now and I am sure that much of my reaction was due to tiredness - I had been looking after a 2 year old grand daughter over the weekend, exhausting - and I have noticed before that if I am tired physically I am more prone to emotional downs too. Just waiting for results is emotionally and physically draining so I suppose it is no wonder we react as we do.
Someone said that we ‘secondaries’ are never free from our little cloud and it follows us everywhere, sometimes getting bigger and blacker and sometimes so small, white, fluffy and inconsequential we almost forget it is there - but it always is and we have to learn its moods and learn to live with it.
Thanks everyone for their posts, they do help. Somehow reading what others have written, they put things into words that you have half thought or not been able to verbalise. It helps you to regain your sense of perspective, brings ‘things’ back to some sense of balance, and helps you to cope.
Yep, I feel the same way too. Especially when everyone else is so pleased with the results, all I can think of is ‘but I still have it! The cancer is still there!’ I think how ungrateful I am.
The same when you meet people and they say how well you look! Do they think we are making it up??? I am going back to ‘work’ for a visit on Wednesday and Friday this week and know that some of them will choose to ‘forget’ the reality of my situation and just think that I am having a good time, lots of holidays etc whilst they are stuck at work and worrying about whether they will have a job or not after the cut backs etc. Unbelievably, a GP friend of mine said to me after I had told her all my plans for holidays when my chemo was finished ‘You are having a rather nice time aren’t you?’ I have to admit I had to restrain myself but did manage to say to her, ‘how can you say that, would you really want to swap?’ She did apologise… I suppose we could write a book with all the strange things people say to us!
I had a scan last week and am going for results this coming Friday. I was diagnosed with bone mets last December four years after a mastectomy. I was so convinced I was clear that I walked round with the bone mets misdiagnosed as a frozen shoulder for 6 months…but thats another story.
I am just fed up with the ups and downs and not knowing, I almost want it to be all over. Does waiting for results ever get any easier? My husband hasn’t slept for 2 weeks. In some ways its worse for him, we have a 7 year old and an 8 year old who he never planned to raise alone. I am trying to hold down my job, but I spend half my working day on web sites looking for answers that aren’t there.
So if its all clear on Friday should I open the champagne? Has anyone tried celebrating even though you know its not going away? And does it help?
Hi weasal - you should do exactly what you want to do Have a glass of champagne, plan a holiday, buy something nice - or all of the above! I think we are all individual in our feelings but I certainly celebrate a good result - even though the dratted BC is still there. I celebrate ‘the way I feel at the moment’ because I know it won’t last forever but whilst I still feel good I make sure I do lots of nice things whilst I still can. I don’t think the waiting for results gets any easier so I hope you and your OH can sleep better after Friday and Good luck with your results.
Nicky
Hi all, I just wanted to join in and say hello - I am 30 and was diagnosed with lung mets 3 weeks ago, so v new to this. I had a BC recurrence in June this year, followed by a mastectomy and recon, having initially had BC (lumpectomy, chemo, rads) last year. 3 days after my recurrence, I found out I was BRCA1 so was planning to have a risk-reducing mastectomy this month until a ‘routine’ PET scan picked up these things in my lungs. I am not sure how to feel really, my oncologist has given it to me straight after I asked her to, perhaps I won’t ask next time! I know I will have to learn to live with this, at the moment though it just seems impossible. I don’t feel upset, I am just hideously disappointed. I was just getting over BC when this happened, thought I had all the madness out of my life and the last 3 months have been a complete whirlwind. My family have fallen to pieces with the news and I am sooooo bored of talking about it already! It’s only been 3 weeks and the amount of people who say ‘but you look so well’ which is obviously the annoying and cruel thing about this disease. Anyway not sure where I’m going with this, just wanted to make contact really. Hope to ‘talk’ to some of you again soon …
Hi and welcome to the club no-one wants to belong to! So sorry that you have to join us but there is a lot of support and wisdom on these forums. I don’t know if you have posted on another thread at all but sometimes new posts get a bit lost if they are added onto an existing one. If you want to ‘talk’ with ladies with lung mets it’s also worth doing a ‘search’ for lung mets and that should bring up any ones that are still current.
I know how you feel about getting a secondary dx though (I have bone mets) and it must be even more difficult for you as you have only recently finished treatment for your primary. My bone mets we discovered by a routine CT scan after I had a local recurrence so it is a complete shock when you haven’t had any symptoms or reasons to believe there was a problem. I also know what you mean about being ‘bored’ by all the explaining, I ended up saying to close friends and family to email me as I really didn’t want to talk or explain any more. I hope you are getting support though from everyone who does know and that your treatment plan is sorted. Good luck and possibly try starting new thread if there’s not much activity on here.
Nicky
Hi Everyone, Francescap, so sorry you’ve had to join the site. You will get loads of support on here as Nicky says. I also have secondaries, but in my liver and spine. It took 18 years for the little beasts to appear and initially in January I thought I was a goner! However, here I am, now on Arimidex and bondronat and I feel fine apart from the aches and pains which are just a side effect of the tablets. I did have taxotere, but that didn’t work very well. However, the Arimidex have shruk the tumours dramatically so I’m very pleased. Most of the time, I just assume that I’m going to live for years and years and you will see from the various threads that many women with secondaries do exactly that. Like Nicky, I had no symptoms from the bone mets whatsoever, it was the pain in my side that caused me to go to the Docs. When people say how well you look, I think it’s simply because they don’t know what else to say. It can be infuriating as sometimes you feel like crap, but I just say ‘thanks’ and leave it at that, otherwise you spend your life explaining yourself. I’m sure you will begin to feel better once the treatment plan is sorted and you have started it. I wish you the very best of luck and I’m sending you lots of love and cyber hugs. Hope everyone else is feeling well today. Loadsa love, Dianne x x x
Hi francescap,
Sorry you’ve had to join us but swelcome. I was dx with bone mets in March of this year 10 1/2 years after primary dx and yes it’s a huge blow!
Glad you’ve come and introduced yourself, I’ve found the support and friendship here a great help in coming to terms and getting on with life.Do keep in touch and let us know how things go, we’ll do our best to support you.There are plenty of positive stories on here so hope you will start to feel less flattened soon.
With love Julie x
I’ve just posted on another thread about my wife’s music but I think I may be able to contribute something here.
It’s nearly a year since her “multiple” lungs mets diagnosis followed the invasive breast cancer diagnosis. Last autumn was shit beyond belief for anyone who has not experienced what all this means. Sofie was in a trial, which didn’t really help, and then she “sacked” that hosptial (you can do this in Germany) and went elsewhere and things improved with Zoladex, continued Hercptin and good old Tamoxifen! The last scan (July) showed NED! But I absolutely relate to you reference to the “cloud”. Life seems good now - we can almost convince ourselves that that’s it - but…
I’ve stayed away from here for a while (my wife’s languages are Georgian, Russian and German, in that order, so I’m writing on herm and my, behalf) because things look so good (especially since last autumn of shit hurricanes) but this disease is still what it is… And we want to forget about it sometimes.
Have a glass of champagne, plan a holiday, buy something nice - or all of the above! I think we are all individual in our feelings but I certainly celebrate a good result - even though the dratted BC is still there. I celebrate ‘the way I feel at the moment’ because I know it won’t last forever but whilst I still feel good I make sure I do lots of nice things whilst I still can. I don’t think the waiting for results gets any easier so I hope you and your OH can sleep better after Friday and Good luck with your results.