A small question

christinecarl
christinecarl Member Posts: 543
edited March 2014 in Colorectal Cancer #1
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.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    My opinion only
    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
    John23 Member Posts: 2,122
    NED


    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
    abrub Member Posts: 2,174 Member
    I agree with John here
    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
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    From surgery
    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
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    abrub said:

    I agree with John here
    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

    Let me ask this question .....
    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
    AnneCan Member Posts: 3,673
    Buzzard said:

    Let me ask this question .....
    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

    Very true, in my opinion,
    Very true, in my opinion, Buzz!
  • Nana b
    Nana b Member Posts: 3,030
    Buzzard said:

    Let me ask this question .....
    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

    Absolutely!!!!!!!!!
    I agree! I have been NED for a year and am stage !V!!!! Sorry Buzz, but I had to post!
  • PGLGreg
    PGLGreg Member Posts: 731
    "NED" is a very fine term,
    "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
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Nana b said:

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

    Don't be sorry Nana b...
    you are living proof that NED is a significant term.......and one that I hope to hear again Tuesday evening........Love to all, Buzz
  • geotina
    geotina Member Posts: 2,111
    Christine:
    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
    nursesheri Member Posts: 50
    geotina said:

    Christine:
    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

    As a newly dx stage 4, with
    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
    wmcbane Member Posts: 33
    My oncologist says
    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
    P_I_T_A Member Posts: 133
    prefer remission myself
    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
    tiny one Member Posts: 465
    NED
    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.