Hi
Could anyone explain the term ‘A breast cancer survivour’? Is it when treatment has finished and you hope you are? Is it after the first clear mammo after BC? Is it after 5 years when you have had no recurrence ? I have finished all active treatment 7 weeks ago and waiting to see my onc next week…I would never feel comfortable saying ‘I survived breast cancer’ I feel I would be tempting fate… cause to be honest I think Im going to be scared for the rest of my life now for the fear of it coming back…Although its very early days still for me and maybe the fear may become less…But then all that said I’m still here arn’t I?CONFUSED.COM…
Take care
Kate x
Hi Kate
Good question! Not sure either when you can call yourself a survivor! I am coming up 2 years in Jan from dx finished all treatments last Sept? I am free of it as far as I knowbut am I yet considered to have “survived” breast cancer I really dont know I still get panic attack at every twinge although have got better at not wanting to make a dr’s appointment every 5 mins lol!
Will read any answers with interest
Jill
Me as well…I don’t like that term as it temts fate…I was dx last year and as far as I am concerned I will always be worried that it may pay me another visit…I don’t even like people saying “you are in remission”…it gets on my nerves…let them be in remission and learn the true feelings this invokes in me…god…there I go…rant…rant…rant…
I believe i am living with bc. Ned is my faithful friend for the moment. I have survived the treatment twice in 2003 and in 2010. But i know it could come back. I am making the most of the time with Ned and trying not to worry, but as I have checkups every 3 months it is not always easy.
Good luck to you
Maria xx
(NED=No evidence of disease)
I totally agree , I have finished active treatment and am Tamoxifen for ?? years to be decided, I see my Onc also for the first time next week and have the jitters already, I feel at this moment I will always be living with one eye over my shoulder dreading the cancer may return, I still dont know what to say, I have cancer or Had cancer certainly not I am a survivor, yes I survived the surgery, chemo,Rads etc but its very early days for me ans like other ladies an terrified of tempting fate
Love to all x
A breast cancer survivor is when you die of something else.
Zeppa, I love that comment! And I agree so much with everyone else in their comments. It is a different life after bc, never feeling quite free of worry and fear that the bc returns. I am still trying to come to terms with the ‘new me’ and often look in the mirror and wonder who she is. I think I am a survivor, but not of bc, my survival is about coming through the other side of bc treatment and trying to take each day at a time. Unless you have been there then you really cannot appreciate how simplistic the term ;bc survivor’ is, and how it actually minimises the reality of living post diagnosis. I wish everyone all the best on this ‘new me journey’ and wish you all continued good health. jayne.
Wow intresting ladies Thank you for your comments 
Zeppa yours especially straight to the point no messing!! lol
have a good evening everyone!!
Kate x
I call it NEDDY - no evidence of the damned disease as yet!!
I guess I’m fortunate, as my particular BC for ladies of my age is 3%, my recuurence rate is 5%, so I had a good think about all the statistics, and decided I’ll die of something else if I can…
grumpy
Laughed out loud Zeppa, how true xx
Zeppa that’s the best answer ever!
I don’t like the ‘survivor’ word because what does that make people whose cancer tskes their lives, whether quickly or slowly? I feel there ought to be a better ‘language’ but not sure what it owuld be. I describe myself as NED, I’m happy that way. Grumpy I love your extended version of NEDDY… that has refreshing honesty. In the part of Scotland where I live NED also means ‘Non Educated Deliquent’ and the female version is Nedette. In the BC context, I’m very happy to be a Nedette!
Hi again
I LOVE NEDDY & NEDETTE!! lol So I suppose I am in NED land at the moment and just a hormonal tamoxifen sometimes psycho mood swinging female!! How could we abbreviate that?
This is why some of us dislke the terms survivor and victim, and why the medics don’t use the word cure. Since I’m on my second time round, but am still likely to live long enough to die of something else, I think I will adopt NEDDY as my description. Thanks, Zeppa and Grumpy. We could always have Neddy-T, Neddy-A (Arimidex/Anastrozole), etc, and on bad days, Neddy-P,
I don’t like the term ‘survivor’, it makes me sound too much like a victim - I am not into that, I am a ‘get on and deal with it’ sort of person - I have my moments as we all do but try not to dwell on those.
But as the term is out there, and I am over five years on, I am definitely a breast cancer survivor for the moment. But I would never use that term - aside from the victim conotations, I do not know what will happen tomorrow, and saying I am a survivor implies that it is all in the past, over and done with. It perpetuates the belief that we are ‘all clear’ of the disease, that we can skip happily into the sunset with no fear of return. So if anyone ever asked me I would say that I had breast cancer in the past, and I am NED now. Not a survivor, not all clear.
I totally agree with your comments Roadrunner…I really dont like to use the survivor word either.Friends say ‘oh well you can put it all behind you now’…REALLY!! If only we could x
This is quite interesting … so , if you have finished all active treatment and on extended hormone therapy ie tamoxifen etc do you say ’ I had breast cancer ’ im so scared of jinxing myself, are you considered NED once surgery, chemo and rads over with ? Im just curious as waiting to see Onc next week 1st time since active treatment finished but then have another appointment on 4th Dec with team for signing off to open access if all ok
X
We all had breast cancer for significant amounts of time without knowing it. Others are walking around at the moment without knowing, and some will die never knowing. Once you hit your 80s your chance of having BC is about 50 percent I think, it’s just mostly it goes undiagnosed and people die from something else. Everyone’s body is making cancer cells all the time, it’s just that usually they get killed off. So to that extent, everyone has cancer.
It’s also a problem of linguistics. The word ‘cancer’ (and even site specific terms like ‘breast cancer’) are rather anachronistic catch-alls given before people knew much about disease and the fact that cancer it is actually several different diseases with symptomatic similarities. So it’s a bit like when people in the past were described as having ‘the pox’.
I do like NEDDY though
Maybe I am just tempting fate but I definitely do say “I HAD bc” and I have even used the “s” word of myself in trying to explain to a work colleague why I was no longer prepared to get steamed up about whatever the latest office gripe was.
I am 21 months post bc surgery and still on tamoxifen (for another 3+ years and maybe more). 1st annual mammo said NED. Currently having various lipofill reconstructions to try to improve the cosmetic side of things and with various tamoxifen SEs.
Of course it maybe totally wrong for me to see myself that way and it maybe that I am quite wrong and this b*tch of a disease is waiting round the corner for me. But am I better off for allowing thoughts like that to darken my “now”? It is an individual thing and something we all have to decide for ourselves what we feel comfortable about, but for me, I want bc gone from my life, my thoughts, as much as it reasonably can be.
I DID survive bc and yes, sometime it, or something else, will get me somewhere down the line, but then something is going to catch up with everyone at some stage.
Let’s just hope that whatever we think of ourselves as being, and whatever label anyone else might use, that sometime is a long, long way off for all of us xx
love your post Zeppa. …the term Nedette is brilliant Revcat…I can live with that…totally understand the not getting steamed up approach MG…on the benchland thread I describe it as “couldn’tgiveamonkey’s”…if this has taught me anything at all it is that life is for living…no one knows how long they will be alive…the term cancer victim gets right up my nose…I am not a victim of anything…I did not even feel ill even when I had my tumour…it was the chemo that made me feel bad and the tam gives me flushes…we should be described as female William Wallaces…BRAVEHEARTS…M
I agree with you all and especaily applestreet’s comment about life is for living.
Unfortunately I come from the ‘dark’ side as I have developed bone mets, however nearly 5 years on from dx and I don’t feel ill, in fact I feel the same as I did before I had my primary dx 9 years ago. What I would say is, even when I had my secondary dx, I could honestly say that if I had popped my clogs at that point I would have had no regrets about the way I lived my life before, during and after diagnosis. Obviously my only regret then (and now) would be that I died young.
Although bc is on our minds I found once I’d got to the 1st year mammogram it didn’t occupy me every day as it had before and gradually I got on with life, of course hoping it never came back. When it did I was so stunned, my prognosis had been excellent although I do suppose they got it right as I am still here after 5 years albeit with secondaries. Certainly a secondary dx focuses the mind even more on the here and now, not on the what ifs. My advice would be to get on and enjoy life as much as you can and have no regrets.
Nicky x