Hi everyone
Well after scans and a biposy apparently I am still NED. Onc is monitoring my lymph node but radiologist who took the sample said it didn’t look suspicious to him as, although enlarged, was a nice round shape! Also biopsy came back clear.
All this is fantastic news obviously but I am finding it very hard to celebrate as I feel strangely in limbo - it’s always a case of ‘well it didn’t get me this time but next time could be very different’.
I have been NED three years now and am wondering how long the situation could continue - and yes, is it conceivable that it could be for a very long time/normal lifetime?
What are other people’s stories with this? Are many of you NED and if so for how long? Three years ago I had secondaries removed from my lung and sternum, primary was eight years ago. I am on herceptin.
Thsnk you for listening to me!
Justy
Hi Justy…I’ve never been NED but my cancer was completely non active for nearly 3 years while I was on Arimidex…I wish I could have relaxed more at the time but I was having monthly tumour markers and found myself dreading the time when Arimidex would finally stop being effective. Actually when it did finally stop working I was quite relaxed about it…?! I’m now back to low, low tumour markers, remission but not NED and I’m less fixated on what might happen next…knowing what we know it’s hard to celebrate but enjoy your limbo time if you can…and I now know you can (hopefully) have another good response to treatment. Take Care! x
Hi Justy,
Just wanted to say how pleased I was to hear your good news. I completely understand that numb feeling. You want to be euphoric but the nagging fear of it coming back is always there. My last 2 scans have been “clear” and I say I’m NED as that’s how I understood it from my onc. but on closer reading of my scan reports I think it’s more like no active mets showing up but that’s good enough for me for now. Next scan at end of May.
I’ve been wondering how you are as I’ve not been on your site for a while and you were so welcoming.
Take care,
Anne
Hi Justy
I was interested to read that you had secondaries removed from your lung and sternum three years ago and I was wondering if you could tell us a little more about that.
Thanks
Hi Jackson2 and thank you everyone for your replies.
Yes I had four tumours surgically removed but I had to fight for it. My local hospital did not want me to have surgery once it was felt I had a lung tumour as well as those on my sternum - but I wasn’t taking no for an answer!
I eventually was recommended to a surgeon at the Royal Brompton in London (by a lady with lung cancer) who specialised in removing tumours from the chest and lung, and he agreed to take me on after doing a thorough review of my scans. The Brompton specialises in thorassic surgery/treatment.
He even said there was a chance that I could remain cancer-free, which no-one else would say to me at the time, and so far he has been right.
It was big surgery and my sternum has been replaced with a prosthesis (like a large plate) but it was well worth it.
My surgeon has retired now but there are still surgeons at the Brompton doing similar work.
You would need to get them to see you with a current scan, they will only agree to surgery if they think they can help, obviously, and not everyone is suitable.
Hope that helps
Justy x