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remission

horton4
Posts: 1
Joined: Jul 2006

When are you in remission or when are you considered a surivour? And where do they get the five year thing?

Betsydoglover's picture
Betsydoglover
Posts: 1234
Joined: Jul 2005

Hi -

I have Stage IV CRC. I consider myself a survivor from Day 1 (diagnosis day). So, I have survived for 13 months and 23 days. I have been NED (in remission) for 10 months and 25 days. I have been chemo-free for 7 months and 5 days. I have a long way to go to hit the "5 year milestone" - but that is just a made up goal, anyway.

Take care and be a survivor from the very first day.

Betsy

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Survivor, from the day you are diagnosed. Each day beyond you are winning!
Remission/5 year thing...no one really knows. I have 2 different dates for my rectal cancer...and I guess I just started on my breast cancer, even tho my radioncologist said I REALLY was done 3 weeks ago...sigh...I guess pick a date, whenever you have been told there is no sign of the cancer...
Hugs, from a VERY confused bear...
Kathi

MarkWalz
Posts: 58
Joined: Jan 2006

I believe we have many terms that become very confusing. I was told that the day I was dz became the day I was a survior. So since March 8, 2005 I became a survior. I was dz with a huge tumor in my colon, 8 turmors in my liver and it rested on my bladder. I was stage 4 with 6-8 months to live. All my scans have come back clean. (I have one coming up on July 18 and I am confident it will be clean too)
The No Evidence of Disease (NED) is something I found here on the site. My doctor told me that I orginally had a life threatning sickness but as far as he is concerned I was, in his words ,"cured". That was on Februay 21, 2006. He told me to tell everyone that exact thing.
Now "remission" I was always told that "remission" meant five years in not having cancer come back , then you are in remission. I prefer the NED. When I get to my five year time frame, I guess I can say I am offically in remisson. Whatever we call it , or hear it, I feel that I am doing well. Am I cured ? Am I healed ? Am I in NED? Am I in remission? I think of all these. I am just glad to talk to you, or anyone, because everyday is a new day for me. I wish the same for you.
Mark

taraHK
Posts: 1961
Joined: Aug 2003

Survivor from the day of diagnosis. For me, in remission from the first time AFTER diagnosis that someone tells me there is no evidence of disease (NED). Well, I guess from the point ones first treatment is completed. (I had presurgical radiation,then surgery, then chemo. Once the chemo was finished, and I had one clear CT or PET, I considered myself in remission).

The five year thing is a good question. My understanding is that it is general to all cancers. Once you are 5-years post-treatment with no evidence of disease, you are considered "cured". We had a debate here a few weeks ago about when to start counting those 5 years -- for me, I count from the day of my surgery. Fortunately or unfortunately, I was told that, due to the improvements in treatments (esp chemo), doctors are sometimes seeing recurrences much later eg 7 years instead of 5. On the other hand, I was told that if you make it to 2 years post-tx with no recurrence, your chances of a recurrence drop dramatically. In the end, of couse, it's all just stats. We are all individuals - and miracles occur. Best wishes

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

For me, remission says I have a disease that is not active at this current time. Although this may be true, I prefer to rejoice in the fact that I am NED. No matter for how long and how painful or easy it was to get there, I am thankful that until my next test I get to control my destiny and be cancer free. I expect it to continue on, but for today, I get to tell the world that I am cancer free. What an empowerment.
Limey.

ron50's picture
ron50
Posts: 1637
Joined: Nov 2001

Hi Horton,
The day after I was operated on I knew I was cured(stage 3 6 bad nodes). They didn't believe me so they saturated me with chemo for twelve months and told me I was in remission,(nope I'm cured.)
Finally after five years my surgeon told me what I already knew,I was cured 'but' he said some docs don't believe that you are cured till seven years. So I survived for seven years so now I can say I'm sure I'm cured. The moral of my story is enjoy your survival from day one time means nothing. Good luck Ron.(now at 81/2 years ,not that it matters)

pink05
Posts: 553
Joined: Mar 2006

I have also wondered this myself. My dad just got his CAT scan results last week and the two mets on his liver appear to be completely gone, however, the onc said that it is possible that there are micro cells too tiny to be picked up by the scan. Does this mean he is NED? He did use the term remission but with extreme caution. It is funny though, I think doctors don't even know themselves when to consider someone in remission or cured. I have found that docs are very conservative in telling there patients too much. Maybe they are afraid of lawsuits or something. I know that a few weeks ago, my dad's onc said that my dad would only get 4 week breaks from chemo every now and then for the rest of his life, however I could have sworn that now the doc wants to do chemo for 2 more months and then give my dad a 4 month break. It's funny how doctors change their tune once things happen that they probably aren't expecting (like a stage IV patient being NED). I am so tired of hearing docs and others say that stage IVs will never be cured and that chemo for them is just palliative. That's why I don't read stats on the internet anymore because they make it seem like anyone with stages III or IV have a gloomy prognosis and that just isn't true. Everyone is an individual, not a statistic.

God bless everyone,

-Lee-

Betsydoglover's picture
Betsydoglover
Posts: 1234
Joined: Jul 2005

Hi Lee -

These are great results for your Dad. (And yes he is NED - no scans can pick up miscellaneous cancer cells just floating about.) When I had my last chemo treatment (cycle started 11/28/05), my oncologist characterized it as a break (and pretty much said we'd take the break regardless of my December PET and CT scan results). But my December (and Feb, March, April and June) scans have been NED and so now we are no longer talking about a "break", but instead are waiting to see if any further treatment will be necessary (ok - that really means watching for a recurrence, but I prefer not to think of it in those terms).

My oncologist has always been very hopeful with me, but also honest and face it - the statistics are not good - so it is not unexpected that oncologists would prepare you for a life on and off of chemo. The longer I am NED, the more I dread a return to non-NED status, but I know that if a "spot" shows up, I will do another course of chemo in an attempt (successful, I assume!) to restore my NED status.

Take care and I am so happy for your Dad's success.
Betsy

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

The terminology gets confusing but in the end I think that the most important thing is to be NED and remain so. We are survivors when diagnosed. Unfortunately however long we go we are always going to be giving some look over our shoulder for the beast and need to continue to get regular checkups after 5 yrs even if not so often. I too like to consider myself cured although it is difficult to do so when one is still getting chemo.
Dick

rejoyous
Posts: 259
Joined: Nov 2004

Like many others, I considered myself a survivor right after diagnosis, and I've never met sweeter letters than NED. I plan to have a big party at five years, but I celebrate a victory with every clean c-t scan. I just passed the two year mark from my diagnosis, and I felt that as a huge turning point. But honestly, every day I move further into my life feels to me like a miracle.

--Ellie

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