Have finished surgery chemo n radio. N they hope the cancer had gone with surgery n the treatment hopefully shud help. Just yearly mammograms !! Does this mean I’m In remission. I feel I can’t say I’m cancer free no one knows. Is remission th right word. I don’t know. Do I say it’s all gone im fine now. Don’t know whY I shud say ??? Xxxx rozita
apparentlythey say " no evidence of disease" ( NED) and thats as good as it gets! ( good enough for me!)
Hi Rozita,
I went down the same road as you,chemo,MX,rads then 8years of tablets and its almost 2 years since diagnosis. At my appointment with the onc 6 months ago I said "am I now cancer-free?" his answer was that they dont say that till after 5yrs,whether thats 5years after end of treatment or 5yrs from DX,he didnt say.So I said “so what do I say when people genuinely want to know how I am?” "We just say youre in remission at this stage". I went again last week but only saw the understudy,his exam was the quickest Ive ever had,hardly worth flying home from Spain for but my hubby said you cant put a price on reassurance. So for the time being I think we have to settle for that word,which Ive never known a laymans` explanation for,anybody help me without making it sound frightening?
Love to all, Mags xx
I was told by my oncologists that you are classed as being in remission from the day the surgeon removes your cancer. They also said that after 5 years they can tell you you are “technically cured” which of course is not quite the same as being cured. My breast care nurse said they will only ever tell you “no evidence of disease”.
My remission period ends next year and I also turn 50, so my surgeon told me I will pass into the screening programme the following year.
Cherub it’s interesting that NED is used for primaries - I had thought that was for those with secondaries that have had successful treatment.
I know it’s a bit of a mouth full but in your position Rozita I think I would answer along the lines of “My primary cancer has been successfully treated, but they don’t give you the all clear for X years”. It is hard to know what to say though - my situation is a bit more complex and it’s hard to explain in a brief reply - I never know whether to launch into it, or just an “I’m fine for now, thanks” - I usually go with the latter.
finty x
I had breast cancer 11 years ago, and do not expect it to come back, but I never use the words “all clear”. “No evidence of disease” is a more suitable thing to say, because breast cancer is very unpredictable.
Newspapers usually use the all clear for famous people, but they then find they have to have a mastectomy.
I sometimes think using the term “all clear” is tempting fate tbh.
I guess I must be a bit flippant.
If people ask me if where I’m at, I say I’ve finished treatment apart from the drug but with breast cancer- there’s no cure as yet. You live with it or you die with it- hopefully the former.
Must admit, I generally point out that I’m not cured, I just live with it.
I must be a bit flippant too, but I tell people I am cured but just have a higher chance of re-occurance than other women. For most women with primaries who caught is early will be cured.
I know the reality is I am not ‘cured’, but to other people the specifics don’t matter and for me I want to take the lessons of bc and move on, not worry about it for the rest of my life.
I WAS TOLD BY MY CANCER NURSE AND ONCOLOGIST , THAT I HAVE TO LEARN TO LIVE WITH CANCER , I HAD CHEMO RADIO AND MASTECTOMY AND NODES CLEARANCE , IS THIS TRUE THAT THEY WILL NEVER SAY IM CURED OR EVEN IN REMISSION TJANX ANITA X
I was also told by the team that NED is as good as it gets. As for telling people, my good friends tend to know the score, but generally for those enquiries from other people I say ‘I’m doing well, thanks’ and try to move the conversation on.
C
I was told that we never get ‘the all clear’ with breast cancer.NED is as good as it gets-there are many on here who have had cancer return after 5,10,15 or even 20 years.Recurrence is less likely after 5 years[8 if you are triple negative].I just tell people,‘I’m fine at the moment thanks,my most recent tests showed no evidence of disease.’
Long may it last for all of us-ned is our best friend-may he remain faithful 
Val xxx
I also was told there can never be an 'all clear ’ after a primary.
Also that no guarantees could ever be given but we were aiming for cure.
My cancer came back after 8 years.I guess they do not want you to be overly worried, just to be vigilant and to get on with the rest of your life.
julie
Like Val and juliet ,i was also told we are never given the “all clear”,
So many people in non cancer world especialy the media think we are cured after the magic 5 yrs , this may be true for some cancers ,but breast cancer is unpredictable and can recurr as we all know 10,15,20 yrs later . I remember my oncoligist once telling me that breast cancer always comes back, but our aim is to get you to a ripe old age and to die of something else before it ever does.
Many people WILL be cured of their cancers after sucessfull treatments , but i quess none of us can realy know that for sure,and thats why our cancer specialists are not keen to use the word “cured” NED seems to be as good as it gets and will certainly do for me.
I also tell people im doing ok at the minute thanks
Linda x
What a cheery thread…
Hi,
I say ‘ok so far’ and that seems to end the conversation for all but the most persistent and if they persit I tell them Bc is not one of the cancers that you get a ‘you’re cured’ for and you just have to live with that fact. That tends to end the conversation.
Good luck and hugs everyone
Lily x
Yea I thought that, just what you like to read and cheer you up, is any one clear of it, it can happen to any one at any one time.
Do hope that wasnt aimed at me Gretchen, im certainly not trying to be unfriendly or unsupportive you know.
Linda
No Linda, I just think this thread is bl**dy depressing!
As a primary lady, I am choosing to believe I am ‘cured’. I am only 36 and do not want to be a Cancer Sufferer for the rest of my life - however long that may be. I’m hoping my bc will come back when I’m 253 years old!!!