Welcome to the Land of NED

As we all know, the best we can hope for is “No Evidence of Disease” rather than “you’re cured”, so this is a thread to celebrate that lovely phrase, and so that those who have been newly diagnosed can read it and take comfort from how many people get to the Land of NED and stay there.

I’ve just had my first annual mammo, and a bone scan that I asked for as I’ve recently developed a pain in my back and hip so obviously imagined the worst, having a fairly aggressive initial diagnosis (Er/PR+, HER2+, Grade 3, Stage 1).

I’m very happy to say I’ve been diagnosed with backache and raging hypochondria, so a massive relief just before Christmas.

I do appreciate that not everyone is able to find the Land of NED, and my thoughts and care go out to all secondaries ladies.

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Well done choccie!

So glad you have been diagnosed with hypochondria and well done on reaching NEDland! Hope you have a great Crimble and a happy and healthy 2012!

Wandyx

I too have reached the wonderful Land of NED with the news today that my first annual mammogram shows no changes. DH and I will be cracking open a bottle of Moet tonight.

I was Grade 3, Stage 3a, ER+ PR- HER- with 6/12 nodes affected including 1 apical node.

We’ve all had a huge amount to contend with this year but we’ve made it through, rather battered and bruised (and I suspect we’re all suffering from an acute case of hypochondria now and probably always will).

So glad to hear about your clear scan CM - a good end to one hell of a year. I’ve said it several times already, but here’s a big “Up yours” to 2011 and a big glass of bubbly raised to 2012. May it be boringly mundane and uneventful for us all.

Jane xxx

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Good idea this post. Im also in remission or ned. I have been for 12 months now and have been told they will see me every 6 months instead of 3 months. I was HER 2 Pos grade 3 stage 2b presumed breast cancer as i was cancer of unknown primary.

Well done choccie!

So glad you have been diagnosed with hypochondria and well done on reaching NEDland! Hope you have a great Crimble and a happy and healthy 2012!

Wandyx

What a wonderful thread & can I say that I much prefer the term NED to “in remission” (always hated that phrase). I must admit I am quite a way down the line (first diagnosed 12 years ago with a local recurrence 7 years ago) but I remember at the time all I seemed to hear about was people who had died from BC, every time I read a paper or turned the TV on it was there in the news. But for every person who dies from BC there are hundreds who survive and I think their stories need to be told in order to give hope to those who are newly diagnosed. So well done. BC can be beaten and we are here to tell the tale!

lbx157

Well done Choccie - what a relief.

Today is the first anniverary of my dx, so I’ll be with Alto on giving 2011 the two fingered salute!

My first mammo isn’t until Jan, but I had an mx and, although a very fast growing Grade 3 lobular ER++ multi focal plus a 5.5cm tumour, I didn’t have any nodes affected; so in some ways I’ve thought of myself as NED since my mx - even though I had to have chemo, etc. and have definitely put myself in that category since rads finished.

After NED, next on my wishlist is NET - No Effects from Treatment!

Good luck to everyone on their journey’s - where ever you are at the moment.
Dx

I’m 5 years and 2 months down the line in the Land of Ned now and I feel very fortunate to be here. Looking forward to an enjoyable Christmas.

It is indeed good to read these stories of Ned-ness (NED in Glasgow = Non Educated Delinquent, and the female version is Nedette… never thought I’d be glad to be one!).

Just to note, not everywhere does annual mammos - my hosp does them annually for lumpectomy people and bi-annually for mastectomy people but we do get 6m check-ups for 5 yrs then annual for another 5 after that.

As a IDC Stage 3 (8cm!) Grade 3 Nodes 3 ER+ PR+ HER- girl I had the book thrown at it between dx in Aug 2010 and end of rads in May 2011… neoadjuvant chemo then mx and ld recon then rads now Tamoxifen… I was one of the annoying lucky ones who worked all through treatment… and I like to think I’ve been NED essentially since mx.

Recently have felt like ‘me’ again and was persuaded by Glasgow girls to start posting more often after my attempted ‘retirement’ from the forums in October :-))

The Land of NED is a good place to be… and I know I am fortunate to be one of those able to live here.

Dearest Girls in the Land of NED… Keep 'em coming we love reading it!!!
Cackles xxx Hugs to all for Christmas!!

Well done on reaching NEDland Choccie!

I assume I am there too. I had grade 1, stage 1 no lymph spread tubular so only WLE and rads. First mammo since dx due in jan - fingers crossed - but onc already said in September he “hoped in the nicest possible way never to see me again” (told him the feeling was mutual :wink: Now I have 6 monthly check ups with the surgeon, who I saw recently, had a good feel around and said he thought everything was fine. So I guess I’m in NEDland too.

SO glad its almost the end of 2011, it most certainly has been a stinker (I got divorced and dx with bc in Jan 2011), bring on 2012!

Right with you Jane in waving the two fingered salute to 2011 and bc

xx

Hi Choccie,

I had read on another thread that you were worried about back pain etc and was so pleased for you when I read that you’re just an old hypochondriac!! NEDland sounds a good place to be - I hope to join you and the others on 19th Jan when my 1st year mammo is due. If it’s clear tho, I will need to have an MRI scan as original tumour did not show on mammo or u/s, so might have to wait a bit longer to become a NED!! Hope I get there!

Pauline

now im just wondering why some of us are told we are NED some are told we are in remission and others are told they are cured anyone know what the difference is i believed we are never told we are cured.

I was diagnosed with stage 4, grade 3, oestrogen + BC with three bone mets to the skull in January 2009. I was lucky enough to have an Oncologist who believes that it is worthwhile attempting treatment with curative intent for patients with very limited spread (those defined as oligometastatic). I had chemo, followed by conventional rads, followed by Cyberknife stereotactic rads for the skull mets.
I was pronounced NED on the 14th November 2011, and am now taking Femera and Bondronat to try and stop recurrence.
I am not cured, because there is no cure for metastatic BC. As far as I am concerned, NED just means either that my cancer is not doing anything at the moment, or that the bone and CT scans I had were not sensitive enough to pick it up.

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Hi Hatty, I have never been sure either. I think NED just means they can’t see anything happening at the moment, remission means the same thing - although maybe a stronger term - and cured, well if only. I believe if TNBC doesn’t come back within five years that it is the case, other than if you get a second primary, but with a hormone positive bc it always could return so it is best to be vigilant.

That said, both my GP and my onc and surgeon have referred to me as being treated “curatively” in the sense that they think they can treat it so that it may never come back. I quite liked the word, sounded positive, but know they weren’t saying I was cured. (I was grade 1, stage 1 and didn’t have chemo. My onc said he didn’t need to follow me up but would hand me back to the surgery team for follow up and “in the nicest possible way, I hope I never see you again.”) I guess the only time I will know that I was cured would be if I live to a ripe old age and/or die of something else, which is why it is such a hard word to use in bc xx

Mary Grace, that is the same as I was told and my oncologist said my treatment was with curative intent but they wont say cured lol who can blame them really. My onc said he would share my reviews with the surgeon so i see each one every 6 months. That i dont mind as its keeping a good eye on me.