In the last week 2 non BC people have referred to me as in remission (“so pleased to hear you are in remission”) - this rattled me as for me it has connotations that the BC will come back and I accept that this may just be my reaction to the word. No medic has used the word remission nor the word “cured”. At the moment I suppose I have no evidence of disease but the last tests I had were March 2012.
Active treatment ended on 21/01 and I continue to take Tam for 5 years. I am experiencing some SEs from the Tam and emotionally feel quite wobbly as I try to re-engage with “normal” life. Before21/01 I could say I was being treated for BC but what am I now?
I am sorry if this seems trivial to those of you still in the throes of treatments and side effects but I keep meeting the attitude that it is all behind me because active treatment has finished and for me it certainly doesn’t feel behind me.
bump
Hi HJU63
I know exactly how you are feeling as I am in the same situation. I dont want to keep harping on about my active treatment yet I also feel that it was such a big part of my life for many months, I am having trouble moving on I suppose. Everything is easier if it has a label though!
I suppose for me, remission is a better word than cured as I think that I would be very lucky indeed if it doesnt come back one day. Sorry if that sounds dramatic, its just how I feel about it. When you have been treated for the big c, its always lurking there somewhere in your mind, isnt it? And there are always on- going problems to deal with, whether they be hormone therapy, mental problems or even problems with scars, reconstructions etc.
If people ask me I say that I have finished active treatment but am having hormone treatment for the next 5 years with regular check ups thrown in along the way. I dont know how you make that into a label though!
Sorry for waffling, I probably havent helped much but I hope things continue well for you!
Joan xx
My wife Marg simply says ‘I am on the mend’ and people seem to accept that,
I describe myself as NEDDY - No Evidence of that Damned Disease as Yet!!!
I know it may come back or spread, but I don’t need everyone else thinking that and putting that special expression of concern on their faces as they ask ‘And how are you getting on?’
After 3 years of the BC rollercoaster I am just thankful I can get on with a normal life again - a different normal from before BC, but normal nonetheless.
Each of us will find a way of describing our current state in a way we find comfortable, what works for one doesn’t necessarily work for others, and that’s absolutely fine.
I love the phase ‘on the mend’ and I’m going to use it!
grumpy
Grumpy, think I will be a NEDDY too from now on!
“on the mend”…love it…NEDDY…love that as well…how do I describe myself?..very cautiously trying to get on with the “new me”…the old me was innocent of all the BC rubbish…the new me is not…I am with Patchit…if it doesn’t come back then I’ll be one of the lucky ones…if it does then I’ll fight it as much as I did the first time…until then I think I’ll be NEDDY well…
HJU63 I’m quite pleased that your friends said “remission” I would of been quite happy with that instead of the “oh so your cured now” and having to explain without sounding pessimistic that it’s not that simple lol. It does get easier and we do get used to our new normal. I’m over 5 years on now and most of the time don’t think about BC but it does sit in the back of the mind and pops up if there is a problem. I have been having problems with my neck and back for a while so had to have a bone scan, which just showed wear and tear 
. So I’m still a neddy lol.
Melxx
How strange this post should appear today, I have just got back from the Royal marsden after having my first mamogram after treatment and I had an Ultrasound as well as pain in breast ( Caused by lymphedema & Rads ) I am now in the land of NEDDY ( Love it grumpy ) , all went well U.S & Mamo showed no signs of anything other than scar tissue and thickening caused by lypmh , its a starnge one , the family are thrilled and of course I am too to them Im cured which is a lovely feeling for them to have I dont want to keep reminding them it MAY come back so if they want to think of me as cured its ok with me I know it could come back at anytime BUT if im lucky it may not , me I am happy with the land of NED it will do for me after the dreadful year of active treatment etc
I have another 4 1/2 years of Tamoxifen and all its joys to cope with but hey thats ok if it keeps it at bay , its been a long year its just nice to hear for now and hopefully many years to come im ok 
Good vibes to all xx
I say my cancer has gone for the moment and hopefully the drugs (doctor nephew prefers ‘medications’, as they sound less illegal! :)) will keep it away.
What we all have to remember is that EVERYONE is at risk of cancer as they get older, because it is a generic term for cells dividing abnormally. We, having had BC, are just slightly (depending on each individual’s age/cancer type/grade etc) more at risk than others who’ve not had a dx…yet.
Apart from the depressing side effects, the hormone therapies actually put us in a BETTER position than people who’ve not had a BC dx and might have cancer happily feeding on their oestrogen without them even knowing.
Having said that, I’d rather still be in blissful ignorance and have all my thick hair, decent fingernails and no thin, sensitive skin in areas I’d really rather it wasn’t so sensitive!
Hiya everyone,
I think this is a particularly vexing problem, Patchit and I went through treatment together and i am with her also on so many of these issues.
Remission: is a curious word and to me has a '70’s feel about it. It just doesn’t seen right. For me it belongs with Oxford bags, tank tops, and platforms. I cannot use that word.
NED: is also tricky as I find myself educating people about cancer, it gets exhausting.
Cured? Well this is tricky too, I cannot describe myself so.
On the mend: sounds a bit too frivolous, but I can see how it would be useful in blocking questioning, and endless explaning. Also that furrowed brow thing that people do, accompanied by a tilt of the head. and sometimes if we are lucky a gentle squeeze of the arm. (lol)
I have to constantly remind myself that my cancer dx is my own private affair and I am at liberty to answer/not answer as I see fit. That is very liberating.
HJU - this issue is not frivolous at all. I think it is human nature to look for ‘labels’ and ‘identities’ even more so after a cancer dx. For me it’s about feeling ‘safe/accurate’ as to which ‘label’ I choose.
If I was forced to choose I suppose NED is the most accurate (and that’s probably why the Medics use it). because as Patchit and others have said. It may/may not come back.
Ws
A thought - at 65 I have 3% chance of BC diagnosis, at 65 I have a 5% chance of recurrence. Am I going to spend the rest of my life worrying? No chance!!!
Life is good and I am so fortunate that medical science has moved on over the last 50years.
Love to you all
grumpy aka NEDDY
Hi All, NEDDY seems a pretty accurate term - although I agree Wintersocks, you end up educating people and it is tiring.
You don’t want to come across as negative, but you are being realistic aren’t you. It’s a shame the Media don’t follow suit. They talk about cured, all clear etc. I know it is great to show people ‘surviving’ cancer, but it is mis leading. My wee grandson can’t understand why his uncle died because they did ‘Staying Alive’ on him as in the TV Ad with Vinnie Jones. It’s a difficult thing to explain to a child that some people don’t survive. We did not want my oldest grandchild to hear the word cancer in case he told a school pal & they told him of someone who died from it. I told him I am better now & the doctors think I am all cured - as far as they can tell. I was ignorant of cancer & its effects & treatments until I got it myself. Now I think I know too much, but that’s my nature, I need to know everything good or bad, better that than guessing & worrying about the what ifs.
I tell folk I have too much trouble to cause & too much talking to do to be going anywhere! 
In my view you should give the facts, and if that involves educating people, look on it as an opportunity to raise awareness of this appalling disease. I think you should say that your doctors cannot currently find any evidence of disease, and that hopefully it will stay that way. But if they ask if that means you are cured, or in remission, you should point out that the words like cure and remission are meaningless in the context of BC, because it is impossible to predict whether your cancer has gone or will return. You should point out that although the majority of cancer patients with a primary diagnosis will not have a recurrence, the fact is nobody can guarantee that, as cancer can lay dormant and return even twenty years later. Also, just because cancer cells are undetectabe, doesn’t mean they’re not there. Similarly the word remission implies that cancer is just having a nap, and will inevitably wake up again - which again is impossible to predict.
Hi All, thank you for your replies.
Like Lemongrove says the word remission implies that cancer is present but has temporarily stopped being active, but will come back. For me, this is something I cannot believe as BC is not predictable and I think for my own wellbeing I need to believe that after all the treatment and in the absence of any contradictory evidence that it has gone. However, that is what is going on inside my head - I also have to handle the people, comments and questions outside of my head. Personally I think educating people is good as this is such a big issue for women of all ages and therefore for those people around them.I have to own up to being very ignorant of BC and its impact before I was diagnosed. NED/NEDDY seem good ways of describing the current situation and I can see that this could lead to explanations of terms etc.
In your experience do people want to know more about BC or is this one of those uncomfortable topics that people would rather avoid?
Helen
I thought the use of the word remmision in cancer terms means that the cancer can’t be detected on scans, X-rays, or blood tests, etc, but there can’t be certainty that there are no cancer cells remaining.
Melxx
On the mend: sounds a bit too frivolous (I can assure you it is not frivolous) that phrase is used for people who are acquaintances or neighbours or people who are just nosey, The people we care about family and good friends don’t ask are you in remission etc they ask when is your next appointment with the breast care nurse/consultant/oncologist the people we care about took the trouble to chat with us and did their own research they understand the dark moments the sheer terror of a cancer diagnosis for the person involved and for their partners and children.
The phrase ‘On the mend’ came from marg’s boss when she was first diagnosed and was off work the usual busybodies started to ask him what was the matter with Marg and to his credit he said ‘If she wanted you to know she would have told you’, but if you want to tell your friends anything tell them ‘She is on the mend’ it stuck, to his credit he took the time to speak with Marg and knows the full details of her diagnosis and prognosis. Please don’t ever think we are frivolous with this disgusting disease.
I guess we’ll all use different phrases, depending on circumstances. As I’m TN, there is no further ongoing treatment available for me, and a slightly higher chance of recurrence, particularly in the first two years. If anyone asks, I tell the truth - I just tend to smile and say “I’m fine now thanks and keeping my fingers crossed it doesn’t come back”. Obviously the possibility of recurrence is in the back of my mind, but I tend not to dwell on it. I regard life as a bit of a lottery and who knows what may or may not happen.
Ditto! people think you should be over the moon when youve finished treatment,i was so strong all the way through,but not now,finished treatment sept 12
Ditto! people think you should be over the moon when youve finished treatment,i was so strong all the way through,but not now,finished treatment sept 12