The Colon Club

When can we mark time to say we have had no cancer for 2 years, 3 years, etc?

Is it from the time of the very first Diagnosis? After the first surgery? When chemo ends?

We mark time from when the Oncologist declared John to have "no evidence of disease", though our Oncologist marks time from diagnosis which was confirmed right after surgery. Technically since they removed the tumor and there was no sign of metastatic disease he was "cancer free" starting 01/2018 and all the chemo was just to mop up any roaming cells. If you go by that he has been cancer free for a little over 1 year, but since we're basically counting from the end of treatment he is only about 7 months out. His second checkup post-treatment is this week, and my heart has been living in my throat since the blood tests last Thursday. I wish they would schedule the appointments the day after like they did during treatment!

I believe it starts when there’s no evidence of disease. Not at the point of initial diagnosis.

We were told it starts from the day of the surgery.

Echo above statements. Correct me if I am wrong, but no cancer equals NED and NED plus 5 years is cured. Remission and NED are interchangeable.

I asked this question being Stage II with chemo. I was NED after surgery, but because I opted for chemo, the survelliance clock started after treatment. He said that if I opted for no chemo, the survelliance clock would start after surgery. Hope this helps.

I'd say from NED and I'd guess that it would depend on your treatment protocol. I had Chemo + Radiation and then Surgery so for me, it would be the surgery date. I had Adjuvant Chemo but I'd still start the counter at surgery.

Well, technically I was NED according to CT scan after surgery, since all observed masses including enlarged lymph nodes PLUS a liver met that didn't even show on the scan were removed, but I don't think any of us thought I was NED. We assumed that we were dealing with remaining microscopic disease, which was why I was on FOLFOX as adjuvant therapy. Even when the July and November CT scans were clean my onc and I didn't take that as evidence of NED, given the first invisible liver met. "Cautiously optimistic" was the way he assessed it. If my liver MRI had been clean, then I think we would have said NED, but of course it wasn't.

So I am inclined to think that someone can realistically start thinking of themselves as NED or "in remission" from the point that *truly effective* scanning targeted at their likely met sites says they are. I'm inclined to think that PET and CT aren't good enough, because they don't pick up the small stuff.

Of course, I am thinking mostly of stage 3 and 4. Things would be different for a person with Stage 1 or 2 post surgery with clean margins.

Of course, this is just my opinion, and if it helps people to think of themselves as NED on less evidence than I personally requires at this point, that is totally up to them.

I just had my 5th cancerversary. I go by surgery date February 26 2014. Surgery is when the cancer is removed. Many still go by dx.

Thank you all for your replies. I see there is no hard and fast rule for when to start marking time!
My son's oncologist told us that colon cancer tends to recur most in the first 2 years, and his CC was found on a colonoscopy Nov. 2017 which is why I was asking.
Thanks be to God his chest/abdominal CT this month was normal. I know he has a way to go but I'll take whatever good news we get!

My oncologist told me that I was considered NED after surgery, even though I had adjuvant chemotherapy. She also said that most recurrences will occur within 2 years of original diagnosis. Having a my first yearly ct scan since finishing treatment in April. Up until then was having every 6 months. I know it is a good thing I graduated to one year, but I am beginning to get anxious as it has been so long since I have had verification I am NED. Still have CEA levels drawn every 6 months, but I don't know if it is even a marker for me. I had my first one drawn after preadjuvant chemo and was less than .5. So I really don't know what it was when I was diagnosed.