When does one start counting NED?

mts · 07-25-2006, 07:18 AM

I read where women say they are 2 years out, 5 years NED, etc...
When do we begin to count? The day we are diagnosed or the day we finish our first treatment protocol? I was diagnosed July 2004 and finished Herceptin July 22, '06

Maria (MTS)

cherylynnie · 07-25-2006, 08:44 AM

Maria,
I asked my onc. this and his reply was the first day of chemo. I thought this was strange, I would logically think the last day of chemo not the first. And for me I had surgery first, before chemo.

I wanted to know because not only do people ask me this question, I don't know why they ask this, but I wanted to know for myself too. But I am not sure I liked his answer. Because chemo was hell and if I was NED the first day of chemo, why go through it. This is my thought process, of course I know why I had to do it. I would like to say I am NED when I have had a PET scan and there is nothing there. I am not sick enough to get one, so for me I don't think I will ever feel NED. Don't get me wrong I have HOPE. But just need to keep my guard up too. Need to be prepared for the worst.

Sorry, I probably made you more confused.

Cheryl

Becky · 07-25-2006, 08:50 AM

I was told it is the first day of any procedure - for me that was surgery.

Some say it is the last day of treatment (not including Herceptin) so that would be the last day of chemo (or rads if you had to have that too or if rads was the only treatment).

Some also use the date of diagnosis (definitively this can be the biopsy or surgery).

Oh well. We're here and that's what really counts anyway.

Kind regards

Becky

StephN · 07-25-2006, 11:13 AM

When there is No Evidence of Disease, you can say you are NED.

This means no MEASURABLE disease. Whether this is by cancerous nodes, primary tumor site, tumor markers, PET or other scans.
So, if the surgery is successful in getting all the cancer that can be "seen", a doc may say you are NED then.
If the surgery is good and the chemo is to "mop up," then the last day of chemo if you have positive nodes.
If you have positive nodes then I would think the last Herceptin would be the day to count.
To me there are a number of ways of measuring and it will depend on the individual case, and how much evidence of disease has been detected to start with.

I was told at the end of my chemo I was NED, but I had rads beginning about 20 days after finishing chemo. I figured that the end of rads would be more accurate, because rads is still mopping up.

Those of you getting adjuvent Herceptin have a big advantage over those of us who did not. This is an additional big gun to catch any lurking cells that may sprout after surviving the chemo.

Three months after finishing rads, I was found to have tumors rampant in my liver. I had a PET scan one year before when I was beginning my chemo, just to make certain of my staging - IIb. Vigilance, my friends.