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A small question

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

When people say they have been NED or a survivor for as long as they have, do you start counting that time from your original diagnosis of cancer? I saw people signing their names and putting years next to how long they have been a survivor at this cancer walk once and I wondered this question. Thanks :)

I know I did not say I was NED until my 1st three month checkup after chemo.

Lovekitties's picture
Lovekitties
Posts: 3333
Joined: Jan 2010

I feel there is a difference between being NED (No Evidence of Disease) and being a survivor.

To my way of thinking you are survivor from date of diagnosis. The timing of NED would be when the doctors no longer find cancer via tests...could be after surgery, after a clean PET/CT...whatever they are using as the determining factor for no more cancer seen.

Just my opinion for what it is worth.

Marie who loves kitties

John23's picture
John23
Posts: 2140
Joined: Jan 2007

NED only means "No Evidence of Disease", -not- that one no longer
has cancer cells growing within their body.

It's a nice "feel good" thing, but in reality means absolutely nothing.

I hate the term, since I see so, so many suffering when they hear
a few months later that cancer is found in a new spot. They seem
to feel that it's "come back", when in reality, it's never left.

Individual cancer cells, and small tumors, are nearly impossible to
detect; any cancer cell or tumor that is not using more glucose than
it's surrounding cells isn't usually detected by present technology.

Chemotherapy drugs seek cells that are using more glucose than
surrounding cells, and will not work well if the cancer isn't using
enough to be identified.

So what good is the term: "NED"?

Cancer is an insidious disease that can go undetected for years.
We can fight it in any way we wish, but we should never let
down our guard because of a coined term designed to make
us feel good about the treatments we've had.

Having been alive as of today, is all the "proof" that should be needed.

Best hopes for all!

John

abrub's picture
abrub
Posts: 2103
Joined: Mar 2010

After my first surgery with the cancer surprise, I had 2 CT scans and a PET scan, all NED. I had to have more surgery to place a belly port for intraperitoneal chemo, and the surgeon expected to look around and find nothing. Instead, he found lots of little tumor growths, and what was supposed to be minor laparscopic surgery to place a port ended up being a laparatomy, with a double colon resection and removal of my omentum, followed by a 28 day hospitalization. So I was NED right after my first surgery, but still had active tumor.

I've now been NED since my second surgery, but I know that the scans can't see little growths. However, having had surgery with a specialist, and also having had the IP chemo, I feel a bit more secure. I would date my "true NED" to July 27, 2007 - second surgery. However, I will never let my guard up.

Frankly, as to being a survivor, we are all survivors by virtue of having survived birth, until we are dead. Saying I'm a 3 year survivor doesn't seem right, because although my cancer was found 3 years ago, it was obviously in my body for several more years prior. Thus I don't really know how long I've had cancer, and survived its invasion into my body. I've survived diagnosis by 3 years (and going strong.)

It's all just a way of looking at things.

Alice

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

This is not for argument sake but just a question to think about. Sure NED means No Evidence of Disease, it doesn't mean its gone but what it does is give people a needed break from the ruthless bombarding they get everyday fighting this. If one says that NED is not significant, ask most any stage 4 what it would mean to them to hear those words from their onc, even knowing its most likely not all gone..............Love and Hope to all..Buzz

AnneCan
Posts: 3692
Joined: Oct 2009

Very true, in my opinion, Buzz!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I agree! I have been NED for a year and am stage !V!!!! Sorry Buzz, but I had to post!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

you are living proof that NED is a significant term.......and one that I hope to hear again Tuesday evening........Love to all, Buzz

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Since I was diagnosed at Stage 1 and had surgery only, I count myself as NED from the date of the surgery. That doesn't mean that I don't worry that my bubble will be burst one day, but that's the victory I'm claiming at this time!

*hugs*
Gail

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"NED" is a very fine term, as terms go. It says exactly what it means. If one took it to mean "no disease", of course one might be misled. But that's not what it says, so naturally, that's not what it means. If a cancerous tumor has been found, that's evidence of disease until an apparently successful surgery has removed the tumor or a test for cancer of some sort gives a negative. Then, there is no plausible evidence of disease, and you're NED, until perhaps in the future some evidence of cancer turns up. NED doesn't mean that you are unlikely to have cancer, because that's not what it says. It might be likely that you have cancer, while at the same time there being no evidence that you actually do have it, so you're still NED.

--Greg

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

The term NED, I don't like so much. I prefer NEAD "no evidence of active disease".

Just my thought on the whole NED thing -

Tina

nursesheri's picture
nursesheri
Posts: 50
Joined: Jul 2010

As a newly dx stage 4, with only 3 tx under my belt, I look forward to the NED status. While I know I will never be "cured", NED sounds good to me. After all, I need something to look forward to, otherwise, what would be the point of poisoning myself every other week?

Sheri

wmcbane
Posts: 33
Joined: May 2010

My oncologist says 'survival' is counted from date of diagnosis. So that's how the medical community defines it, and probably how it's counted in clinical trials analysis.

P_I_T_A's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

Like others have said, even though you're NED this damn beast could rear it's ugly head again at any time. So, instead of telling everyone I'm NED I just let everyone know that in two weeks I'll will be 1yr. in remission and leave it at that.

-DJ

tiny one
Posts: 467
Joined: Jan 2009

For me I figured I was cancer free the minute I came out of surgery. My surgery was Feb 19th 2007. Reversal was Dec 21, 2007. My last Cat scan about 3 weeks ago, all clear.

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