When do you start 'counting' the years disease free?

Smellycrackle · April 2018

I had mastectomy and chemo which finished April 2017 but then had to have Herceptin until December 2017. Wondering when do you start 'counting' those disease free years? At the end of Chemo or the end of Herceptin?

Afraser · April 2018

It varies a bit. For those having chemo before surgery, it's probably after surgery. I think most of us would think we are cancer free when there is no evidence of disease, which for many may be after surgery if chemo is to cover possible but not identified cancer cells. I had the same treatment and I hoped I was free after chemo, but to be honest didn't feel like saying so till a year after diagnosis. Whatever you are comfortable with would be my advice!

Smellycrackle · April 2018

Thanks for that. Yes I'm thinking when chemo finished but as you say what ever feels right. They told me if I get 2 years without a recurrence then it probably won't return, that why I am wondering when to start this " count down". No guarantee either way tho..

Afraser · April 2018

Would love it if there were guarantees! But we can hope.

Scared Mum · April 2018

We counted it from a year from diagnosis after all treatment was done and dusted and the next consult with the breast surgeon said NED

magicmum · April 2018

I counted from original diagnosis, but all the checkups counted from the end of treatment. I have just had my final radiation check up - 5 years on. IDC, wide excision, 9mm Her 2 +, EP+, 6 rounds TCH, Herceptin for the rest of the year, 30 rounds radiaiton, 5 years Arimidex.
All done, all finished ! I was hopeful at around 3 years I think - totally frightened to then. My GP tells me when I get to 15 years with no recurrence I can truly count myself as safe. Roll on 2028 !!
Stay focussed, stay positive, live every minute of your life.

onemargie · April 2018

Hi there I started counting after surgery as boob was fully removed and scans all clear and no lymph nodes involved. Margie x

Sister · April 2018

I started counting from 8 January 2018 - when I had the second surgery to take the breast and nodes. The surgeon believes it's all gone and the rest is just mopping up in case.

kmakm · April 2018

If there's not a hard and fast rule I shall start counting from the end of chemo. But if they find anything in the tissue after the mastectomy I shall start counting from then.

iserbrown · April 2018

I would've said from surgery however as time has gone on and the side effects of treatment are making some days miserable I think my reset button for NED is probably still coming!