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Question about NED

LindaJean
Posts: 19
Joined: Jun 2004

Diagnosed and had colon resection March 2004 with 1 node of 30 was positive, tumor had penetrated colon wall (not a good thing). I also completed 12 folfox chemo treatments that ended last October. So far all has gone fairly well. The one question I have is that quite often some on this site have posted NED as reported by their doctor. Is that based on the CEA test along with CAT scan results? My doctor hasn't come right out and used the words "no evidence of disease" but says so far so good as CEA has been around 1 or below since my surgery last year. I had a cat scan before surgery and a pet scan after and have had 2 cat scans since treatment ended and now it is blood work in 3 months, oh and I will have a colonoscopy next month. So is it wait and see what comes up with each test, taking it a day at a time ? Just curious with all the experiences everyone has had. Thanks for the input!

steved
Posts: 836
Joined: Apr 2004

Baasically - yes. You are are right- after treatment has finished it is a waiting game. No test will ever be able to detect a few rogue cancer cells that were left after surgery and avoided chemo and these can slowly grow- hence the need for all teh bloods, CTs a nd colonoscopies- vigiliance is the key. It is usually said that if you can go for five years iwth no evidencec od frecurrence you are 'cured' ie there is a minimal chance of furhter recurrence. Some are not saying three years is enough but most stick to the five. in the meantime unless there is evidence to the ****trary you are still NED but can't be confident youo stay that way until five years pass. Not an easy thing to live with and we all find our own ways of dealing with the anxiety esp around test time. In many ways it is easier to cope with while still in active treatmetn as you feel positive you are doing something aggressive to prevent it coing back. The waiting after that is some of the hardest part of survivorship.
hope this helps,
steve.

steved
Posts: 836
Joined: Apr 2004

Basically - yes. You are are right- after treatment has finished it is a waiting game. No test will ever be able to detect a few rogue cancer cells that were left after surgery and avoided chemo and these can slowly grow- hence the need for all teh bloods, CTs a nd colonoscopies- vigiliance is the key. It is usually said that if you can go for five years iwth no evidencec of recurrence you are 'cured' ie there is a minimal chance of further recurrence. Some are now saying three years is enough but most stick to the five. in the meantime unless there is evidence to the ****trary you are still NED but can't be confident youo stay that way until five years pass. Not an easy thing to live with and we all find our own ways of dealing with the anxiety esp around test time. In many ways it is easier to cope with while still in active treatmetn as you feel positive you are doing something aggressive to prevent it coing back. The waiting after that is some of the hardest part of survivorship.
hope this helps,
steve.

slammer
Posts: 120
Joined: May 2004

HI Linda-jean, Hope you are feeling good after chemo & all, but as Steve said, it is such a waiting game. I too am doing FolFox treatment on 2nd round of chemo, pretty easy going all in all (so far) but the 5 yr wait is what is in question? Hmmmm , just do the things you should like eat good, vitamins, walk & feel your life, I am happy for you to be off treatments & good scores but hell, honestly it is a wait & see game,, But you sound positive & beat the monster so far! I keep hearing about attitude, well I give it my best, some days I get weepy or alittle down, heck I even posted on like two days ago so negative didn't even sound like me, too many glasses of wine, but go get em & heads up, you are a survivor! And guess waht soon it will be spring & the flowers & birds will come out, That is cool!, Best to ya & congrats on being done!
Love Amy

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