Breast cancer

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All clear or remission???? How do you know??

taralou
Posted by

How do you know you have the all clear?

I am asking as I saw my Oncologist the day before my last chemo and it was for my referral for RT. I asked him if I would be having a scan, MRI etc to confirm cancer has all gone. He said ‘No, as the surgery and chemo has cleared it all and this was all now ‘preventative treatment’.

I didn’t question him as he is the expert!!  My Onco’s I have seen have always been very good.

My question is ….. I think he is telling me I am ‘all clear’? However, when I read posts on here and other sites, places etc people state they have been told they are all clear OR are in remission.

How do I know which I am (hopefully cancer has all gone) this has totally thrown me and realise I should have asked more questions.

Help….

Love Edwina xx

You’re allowed to scream  - You’re allowed to cry  - But do not give up

MAMMOGRAMS save lives, I'm the proof!!! 

7 rounds of chemo, finished 30th May 2018. 15 zaps of radiotherapy, finished 26th July 2018.

I Survived .......

 

 

Weeblemum
Posted by

I think it's difficult for anyone to say that you are all clear with total certainty! First time around, my oncologist said 'we're as sure as we can be that it has gone, but we can never be 100% sure'. That was after Mastectomy, chemo and radiotherapy (1 micromet in one lymph nodes, others clear, no ANC) so what was felt to be belt and braces treatment! 

He didn't use the word remission either - to me that would indicate that it is being controlled or is 'dormant' but is still present. I may be wrong though!

Maybe the terms used depend on the Trust and the oncoloigist! In a way, I was quite glad that he had said that it was never 100% sure as it then didn't come as a huge surprise or shock when I was diagnosed with stage 4 in lungs and bones last year! 

Maybe ring the BCN if she is around and see what she says, just so that you're not spending too much time mulling it around! 

Hugs to you!

Image result for hugs gif

Best wishes

Cathy

x

Dreamthief
Posted by

Hi Edwina  /  

They will never say the 'clear' word as they haven't got the technology yet to find any random single cells that may be hiding, but you have had all the tools in the toolbox chucked at this to minimise the risk of recurrence.

You can label yourself NED (No Evidence of Disease) which is as good as it gets - All you have to do now is get your head around living your new normal and keeping all those 'what if' worries well taped down in a box and hide it in the corner of the attic :)

One last hurdle to crawl under and you can wobble off without your NHS stabilisers :)

Hugs, G n' J

sue G
Posted by

 

Hi.

When I was diagnosed with breast cancer which had spread to my lymph nodes my Consultant said don't worry we can treat it. He never said the word cure.

After mastectomy axilla clearance, chemo and rads I continued to take Arimidex for 10 years and completed this earlier this year.

As far as I am concerned I am 10 years NED  In remission is only a word. 

I am just getting on with my life and the new me. I am so lucky to have seen the births of my 4 grandchildren. 

I try and live as healthily as I can and just hope the cancer doesn't come back one day. 

As time goes by you will feel better and not worry quite as much.

All the very best

Sue xx

taralou
Posted by

Many thanks for your replieS.

  Your words of wisdom sum it all up. I am now NED!!! And I will definitely park it somewhere further than the attic.

   Again, thank you, I will call my BCN just to see what she says.

  Thanks and it is so reassuring to hear you are now 10 years on and in good health. I hope I can emulate that!!!

All in all I know they are just words and I am not worrying too much about it, its just that you do heart these words and wonder is that me??

All good advice which I will take on board and thank you once again.

Take care

Love Edwina xx

You’re allowed to scream  - You’re allowed to cry  - But do not give up

MAMMOGRAMS save lives, I'm the proof!!! 

7 rounds of chemo, finished 30th May 2018. 15 zaps of radiotherapy, finished 26th July 2018.

I Survived .......

 

 

EleanorNya
Posted by

I had the same question. I am supporting my Mother while she is going through her breast cancer battle. She completed her radiotherapy last month, and her breast doctor declared that should be enough as the radiotherapy was more of a preventative measure.

I thought that would be it, but her oncologist is very thorough and has ordered a breast MRI (My Mother had early stage invasive lobular carcinoma which doesn’t always show up on a mammogram and the consultants advised it can sometimes show up in the other breast) to confirm that its “all clear” or whether further action needs to be taken. We are just keeping our fingers crossed that we don’t get any surprises, but I do feel oncologists should always do follow up tests for reassurance that it’s “all clear” - not only for procedure, but to reassure the patient too. 

EleanorNya
Posted by

And congratulations on being NED taralou!! X

Weeblemum
Posted by

I agree  with regard to follow up in general - MRI or CT rather than or as well as mammogram - many people don't get recurrence in the breast - more likely to have spread somewhere else. My mammograms are clear but I have secondaries in bones/lungs which obviously don't show up in the breast! 

However, despite CT/MRI it is still very difficult to say whether someone is 'all clear' as single cancer cells aren't likely to show up but can still be running around the body... I think NED is probably as sure as they can be! 

Best wishes

Cathy

x

EleanorNya
Posted by

Yes this is true! My Mums oncologist main focus was the breast MRI. However she also ordered a CT scan and bone scan (we only have results of the bone scan so far and that came back all clear) for reassurance. We’ve been lucky to have a very thorough oncologist but I think this should be standard practice with all consultants once someone has finished their treatment. It may seem like overkill but at least you can say with confidence that there is NED.

Denisa
Posted by

Hello,my oncologist didnt say anything and I didnt asked.I have finished treatment last year,chemo shrink my tumor almost to nothing,with surgery I had clear margins and I was told for RT is just preventative.My 1st year mammo was clear.I am thinking about it like i am cured.I dont want think that I am still sick or it can come back.This is how I cope.Otherwise i would think about cancer 24/7.I am running now everyday 4 km,back work fulltime and eating healthy.But everybody is different how they react to the diagnosis.This is just my story.

suzy543
Posted by

Hi, I have found your thread very interesting as i too am unsure if/ when i have the all clear.I am still on Herceptin until December but finished chemo and radio. 

People are constantly asking me if i have the all clear yet and i really don't know how to answer it! I was told the results after my lymph node removal that it hasn't spread any further but i haven't had a ct scan or mri....

My first mammogram is due next week so i guess that may give me some answers.

The constant wondering makes my brain hurt!

taralou
Posted by

Hi   I agree with what your saying about the all clear. I think, also, that once treatment is finished people naturally assume you are 'cured'. The only people who totally understand are those that have been or going through it.

I am hoping once this is all over I can just get on with my life and forget all about this but don't think that is going to happen somehow!!!

I will not be due for my mammogram until August so we will see.

Best of luck with your mammogram and make sure you come back and let us know how you get on

Lots of love xx

Love Edwina xx

You’re allowed to scream  - You’re allowed to cry  - But do not give up

MAMMOGRAMS save lives, I'm the proof!!! 

7 rounds of chemo, finished 30th May 2018. 15 zaps of radiotherapy, finished 26th July 2018.

I Survived .......

 

 

suzy543
Posted by

Thanks taralou i will post an update when i get the results, best of luck to you too xx