How do the DR's know we are NED or clear if cancer???...

Hiya all,Hope everyone is keeping well… .

Hmmmm…I have noticed that on many posts, ladies often put that they are NED or they have got the all clear when they have completed all their treatments ect…How do you know? i am intrigued to know how the DR’s can tell us we are NED or clear of cancer. How do they know? Since some of us are having precauitionary chemo because we have had various scans that show there is no evidence of cancer in our bodies,sooh… if the scans don’t pick up any cancer cells that can’t be even seen on the microscope then how can they tell us there is no evidence of cancer??? I think this is an interesting question.

I would value anyones feedback on this one…Many thanks…

arghhh…so sorry for my typing errors. I meant of not if…my letters are wearing off my keyboard…lol…

Hi KB
I have often had the same thought especially when after treatment they dont do scans etc? Except for yearly mammo. Also you read on secondary thread ladies saying they had no symptons??? So how are secondarys picked up??
Also being TN dont even have the comfort of further treatment to at least make you feel more confident it has not come back.
ARGGGGGG!!!
Will be interseting to see other views/comments
Jill

Hiya Jill,
I agree with you about secondaries…how do they know…xx

I think once you are past your treatment and have had all the scans to show whether there is any spread you are NED or all clear unless you are told otherwise, a bit like before you are diagnosed. For example we all must have the cancer before we are diagnosed so we think we are clear then, but actually we are not - we just don’t know (if that makes sense).
I work on the basis that I had all the scans, then I had all the treatment and am now down for yearly mammos. I am all clear unless I get told to the contrary - just like before I ever had cancer in the first place.
Once you have finished treatment you can’t worry all day every day about whether you still have microscopic bits.

Well I found my lump way back in 2000 at the age of 46 so hadn’t had a mammogram. Treatment was chemo first, lumpectomy and node clearance followed by mastectomy and then radiotherapy. Then 5 years of tamoxifen and regular mammograms.
July 2011 I was finally discharged from annual check-ups as it was 5 years since I’d finished Tamoxifen, hugs all round etc.
January 2012 I felt a lump above my mastectomy scar and was diagnosed with a cancerous lymph node behind the muscle. I had surgery in March, no rads cos I’ve been there, no chemo needed cos it’s been caught early so just Letrozole for 5 years.
So my experience of this cancer journey has been that I’ve found the lumps, no doctors or scans found them !!!
xxx

I too found my lump at 47 so before mammo age so I suppose if anything else popped up I would hopefully find that too. But it is spread I am not too sure if you would know about??? Although the chemo is to hopefully make sure anything is mopped up soooooooo!
Jill

Cheers ladies…thank you…

So basically you finish ALL your treatments, you have yearly mammograms and you are seen for 5years?..SO When do the Dr’s tell you there is NED? I mean do they actually tell you NED? Do they say you are all clear? After the 5 years? So basically it’s bye, bye after that? i guess it’s down to you then. If you find anything suspicious or you have any unknown aches or pains then it’s up to you to seek medical advise.

K xx

K,
I was told by my surgeon after my surgery that I was cancer free, all clear but obviously the first 5 years are the years when statistically you are more likely to have a recurrence, after 5 years the chance of a recurrence is about the same percentage as before you were diagnosed. But he told me that I would get recalled now for annual mammos for ever.
Does that make sense?
Sam

Its all very complicated isnt it? lol xx

i have also been told they never say you are cured!!.. x

I was going to annual check-ups for 10 years before I was told bye bye you only need to go for the mammos every 3 years like any other lady who hasn’t had breast cancer.

This time around I saw my GP on a Monday afternoon and she said she’s refer me to the breast cancer clinic. Tuesday morning I rang the clinic and spoke to one of the nurses who booked me in for the following Monday’s clinic, so even after 11 years I still got seen asap.

But, you have to realise that everyone is treated differently, what happened to me won’t neccessarily be the same for someone else and it depends on where you live.

xx

YES , i see but how do they know you are cancer free? how do they know that the chemo has killed any tiny cells that might have started growing from original tumor? …i know they dont keep giving you scans all the time ect coz they are bad for your body…unless they do tumor markers but i thought they only did those if you had secondaries…

K xx

There is no 100% guarantee you are cancer free. When I was diagnosed I had all the scans which showed no spread, I then had chemo, and then surgery. As the surgeon got clear margins there were no stray cells from the original tumour, so the rest of my body was still cancer free as it was when I had the original scans. My surgeon and oncologist work on the basis that unless I find another lump or have other symptoms which suggest a problem elsewhere in my body that I am cancer free. As you say you can’t be scanned every week of the year. I have no idea was tumour markers are.
Have you had surgery yet? If so, and the chemo is a precaution then technically you are cancer free, although obviously at a higher risk of it coming back than you will be in say 5 years for example.
Afraid that is as good as it gets.
Sam

I asked my surgeon if I was in remission, he said that they don’t call it remission, I was NED because I showed no symptons. Also I never had any scans, just WLE, chemo because lymph nodes affected and rads, this was my belt and braces treatment. This was 8 years ago and for all I know the cancer may be back but unless I have symptons this won’t be looked in to. I have private medical insurance so it wasn’t because I was nhs that I didn’t have scans. I was told that scans would show up so many things that unless there were symptons I wouldn’t have any scans.
Hazel

yes… ive had surgery but having surgery still doesn’t mean you are cancer free as they cant be absolutely certain they have got all the cancer out… but i had extensive node involvemet so i had to have a CT scan,plus the fact i had a grade 3, 5cm tumor and i am re negative and her2 positive…so i am in the higher risk bracket. i was told i was having the full kitchen sink thrown in…lol…however i had a CT scan and it was clear…not even showing any abnormalities…but i am always weary that cancer cells break away from them tumor but dr’s cant be certain as they are too small to see which is why we have precautiinary chemo…
Secondary cancer doesn’t always present symptoms, so ive been told.
K xx

Hi KB I was grade 3 in June 2008, I had 2 nodes positive and had lumpectomy, then mastectomy, chemo, rads, tamox and am now on anastrazole. I have just come up to my four years. When I asked my oncologist how do I know it won’t come back, she said we don’t have a crystal ball. I think we have to get on with our lives, we do worry with every twinge/pain but I go with the 2 week rule as have read on here if you still have pain after 2 weeks ring the GP or BCN, I hope this helps, take care junieliz x

Hi KB,
I asked my onc nurse about this and she said they don’t do scans (never had one at dx) and she gave me the impression that, for me, they don’t expect it to come back. The first meeting with my onc he told me I could be cured (his word) but as there was no test they could give me he recommended chemo, to mop up any stray cells, as it was an aggressive form and strongly er+ and Her2+. I had mx first followed by 3 X Tax and Herceptin then 3 X FEC. Still having Herceptin and on Letrozole for 5 years. I had no lymph node, but vascular, involvement which I was told would have been removed with mx.

I believe that the blood tests they do at check-ups would show any abnormalities from the previous ones and any symptoms would be investigated. For example, I know of a woman near me who developed what she thinks is sciatica but when she went for her onc check-up they sent her for an x-ray to be absolutely certain it is sciatica and not secondaries. I guess if they are unsure they will order more tests. We just have to trust our oncs and their experiences of dealing with BC patients.

I hope this helps and try not to worry (easy to say but hard to do).

Take care, Liz, x

i worry about this all the time. I guess that is why many of us post here. If there was no risk of it coming back then we would jsut have our ops and treatment and get on with our lives. it is the uncertainty of it all that makes this such an awful disease to deal with. For example, i was in hospital a fortnight ago with chemo complications after my 3rd cycle of FEC. When in hospital I had terrible headaches and they ordered a CT scan of my brain. My diagnosis was grade 2 , lobular, one node +ve, strongly er +ve and her -ve. Had mx and subsequetlylymph node removal. So, even after ops and although docs say this is early stage bc, they still don’t mess about when it comes to potential spread. It will never really go away I guess and that is why I struggle with this all the time x

We can NEVER Know anything about our futures, whoever we are - I don’t know I shall not fall off a a mountain next time I walk up Helvellyn , or that I won’t fall under a bus next time I walk into the village. I do know that my statistical likelihood of recurence is about 5%, and that for ladies of my age getting a first diagnosis is about 3%. Somehow I can’t get agitated about that, mainly because I know that BC treatment has advanced so much in recent years… so as I see it, NED is fine!!! No worse, no better than everyone else…
I know this doesn’t work for everyone - I am determined that every day will be productive and enjoyable, doing things that are important to me: the number of ‘committees’ I resigned from after I got DX in March 2010 is testament to that! Nowadays I do lots of Big Walks with the dogs, trot off for hols in my wee campervan, put streaks in my hair, get on Skype to friends for good chat, do a Ladies Lunch for a good boozy giggle, see my god-daughters ( one is 45, the other only 9) as often as I can, and most important of all I have learned to say NO in a very loud voice when others want me to do ‘stuff’ and I find it very liberating. But then I am retired, single and child free so I don’t have family responsibilities to consider…
I remember how in the early days during treatment I was demented - are they not telling me something, what will happen next, why am I so weepy and exhausted, I’m too tired to walk the dogs - and now two and a half years on I do feel like a real, if slightly battered, person again.
hope this helps
grumpy ( and two Small Dogs)