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Need clarification, please. 'in remission' vs. NED

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Ok. I have a couple questions that I would like to have answers for, if you've got them. Glenna's post on Mick's thread was making me finally ask. Can some one give me the idiots guide breakdown of NED vs. 'in remission'? I never had a follow up PET or anything. No one has ever really said, go forth! Your cured! Lol. I almost always answer peoples questions by saying, "I had cancer."

So what's the story between the two terms. Where would someone like me fall in? Anyone know?

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Me too Sweet?? Never figured that one out. By the way - 100#!! Way to go. You're a keeper!! (fisherman term, there).

Greg

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Well, I'd like to think so, anyway. ;-)

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Sweet,

I live a life in C limbo. Am I cured, is it in remission or as my last PET reported, I have "no definite findings to suggest residual desease". There is "symetric FDG activity throughout the hypopharynx and larynx,likely reflecting post therapy effects"

So I have NO DEFINITE findings that shows I still have C. It's LIKELY that what showed up on the PET are normal post therapy effects. There'a a lot of wiggle (limbo) room in the words they elect to use.

My mind tells me I'm in remission until I get series of similar reports over the coming years. I will beat this thing and so will you. It's all just a matter of time and with this limbo with each PET dance they just raise the bar. It's getting easier to accept the challenges that this has brought my/our way.

May god bless everyone and provide a very Merry Christmas.

Ed & Gail

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Keeper Dawn - based on my recent experience I've sent an email to my Dr with that very question. I'll post his reply.

Best,

Mick

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thank yooooou!

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Sweet, my last medical onc visit he advised me to have another round of chemo based on the fact that when my neck dissection was done, three of fifteen lymph nodes came back with traces--one was from the originally enlarged nodes a year back. He couldn't clarify whether the cancer traces were active or passive (I'm still waiting to ask my new medical onc about that). The signs were all immediately local to the tumor site--bot--which was gone. He said there were no stats to support more chemo in this case, and that at the present I had a "resonable expectation" to believe I am cured. So I am content for now to do the "resonable expectation" waltz.
Hal

Glenna M's picture
Glenna M
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Joined: May 2009

I'm glad you are going to get an answer from your doctor to clarify this. I have been told, not by a doctor but by many others that are in remission, that remission means it will be back. I guess it really doesn't matter because I have a friend who was told, after his tonsil surgery, that he was cured. One year later they have had to remove his appendix because of cancer and about a month ago they removed half of his colon because of cancer. I feel my remission is better than his "cure".

I try to just live each day and enjoy it without letting the cancer consume my every thought. Somedays I do real good and other days I don't :)

Hope your doctor can answer this for all of us once and for all.

Stay well,
Glenna

luv4lacrosse's picture
luv4lacrosse
Posts: 1377
Joined: Jul 2010

I have often thought this too. I do not have my first PET until Febuary. As long as it neve comes back, I do not really care what they call it.

Keep fight'n the good fight

MIKE

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

If you look at it on Google, it's a very popular question. I'm seeing all sorts of terminology, from;

Complete Remission
Partial Remission,
NED
Cured

Some descriptions refer to solid tumors, soft tumors, time frames ranging from right after treatment, 2 - 5 years...

Interesting, mostly I see it's used a lot interchangeably....

John

oldcamper
Posts: 27
Joined: Oct 2010

Well after the chemo and 40 radiation treatments, I had surgery. While in surgery they found some "scarring" sent it in for testing and out of the 13 samples 3 came back positive for cancer. Now here is where it gets tricky. They believe they got it all but will watch it over the next several months, flash forward to the first PET. It showed reflectivity in the same area the samples came back positive, but the rest of the body was clear. However they believe the reflectivity is from the surgery itself. Then 3 months later I had a complete blood work check and my Oncologist and he said it was all back to normal with no anomilies. He said that was verry good. Now I had a Cat Scan last Monday but I won't know anything until next Friday.
I too felt like I had purchased a car and the sale was over. (ok treatment is all done see you later) LOL. I was told that it is considered in remission until you have 5 years worth of clean test. then it was cured.

Keep up the good fight

Kevin

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I wish it was true about the 5 years and then you are cured, maybe it is for some but not for all of us. My brother had lung cancer, went through chemo and radiation, had all of his scans for 5 years but in his 6th year it showed the lung cancer had come back.

A good friend of mine was told he was cured after surgery and he has since had to have his appendix removed because of cancer and then about 2 months ago he had to have part of his colon removed because of cancer.

As Skiffin said in one of his posts, remission and NED seem to be used interchangably so I think I will just enjoy remission for as long as it lasts and try not to worry about an outcome that I really can't change. If it's going to come back there is no way I can stop it, I try to eat right, exercise and take my vitamins and keep my life as stress free as possible.

After my scans my doctor keeps telling me "I'm okay...for now" so I am just going to keep on enjoying my "for now".

Stay well and I hope your scan results are fantastic.

Glenna

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

I believe you only get a Cured after you are NED for 5 years or that is my understanding. I go back to MD Anderson in March they will do a PET followed by an MRI, if I am still NED that will mark my 5 years and I am hoping for a Cured to be on my report.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

This is a very good question. My thoughts based on the word was that whatever disease you had was held in check. There may be evidence, but no growth' Since NED means there is no evidence, this would later signify that the disease is gone.

An example would be my cancer. During the scans of the first couple of years, the doctor and radiologist thought it may still be there, but was not sure and they would watch it. I believed I was in remission since the tumor was possibly gone and held in check. A couple of years later, there was the determination that the residual was scarring tissues and given the NED rating.

The above is just my interpretation. The doctors had never used the remission terminology, but I was asked several times by family, friends or acquantances if my cancer was in remission.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I know when looking at additional supplemental life insurance at work. All of the paperwork I saw referred to having had cancer within the last five years.

So my presumption was that if I hadn't had anything showing signs of cancer within the last five years, it need not be listed.

BTW, I can annually increase my supplemental insurance each year by $10,000 without question. It's if I wanted to go higher than that, it would warrant additional paperwork and review. I've been there over 21 years, and have done that each year for the additional supplemental.

John

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

NED means "no evidence of disease" at this time. Always good. You could be cured, you could be in remission, you might never have had cancer in the first place...

I was told that my treatment goal was a complete cure (Stage 4 SCC), with a 95% probability level. It would go away, never to return.

Some cancers, apparently, cannot be cured, for whatever reason. In the bones, in the lungs, etc. This does not preclude them from being driven so far into remission that the general effect is the same as cure. You get to live an long and happy life and die from some other cause. Other remissions can be of a shorter duration.

Deb

MarineE5
Posts: 747
Joined: Dec 2005

Outstanding question and I lean towards HAWVET's reply. I fall into the area of the Cured listing according to my Surgeon and Radiation Oncologist. But do I dare "Claim" that title?

As it was explained to me also, was that now that I have reached the 6 year mark without any evidence of reoccurance and NED. I was told that I was cured and I didn't have to return. That is for the Base of Tongue Cancer. I had Melanoma on my left cheek roughly 13 months after the BOT and have recently passed the 5 year mark on that also. Now that I am 5 and 6 yrs out, both Doctors stated that I was cured and didn't need to return. I was very pleased to say the least, but doubt hit me just as quickly. I asked if it was possible to return in 1 year to be checked again. Both Doctors told me the same thing, my time was their time and they would check me for as long as I needed them too.

We all know that it only takes one stinking cancer cell to start all this all over again. But as it was also explained to me that once we reach the 5 year mark, we are suppose to have the same odds of getting cancer as any person that never had it at all. I have also heard other statements that once we have cancer we also have a 50% chance of getting it again.

The words that my Dad would always say about Doctors still ring in my mind. I asked him once when I was a teenager " Why don't you go to the Doctor's when you are sick?". He replied, have you ever read the sign out front of their office? It reads Dr. So and So, practicing MD. He said when they are done practicing, he'll go see them when they figure it all out. : )

My Best to Everyone Here

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thanks for the posts. Can't wait for Mick's reply. Maybe this is a question to ask when I see my RO next. I forget if that's in March or May.

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

Please when you ask you RO let us know the answer

Take care

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Dawn below is what my rad onco said in an email response to my question "making sense of remission, NED, and cured". I appreciate his honesty and his thinking makes a lot of sense to me. Most of what these guys can count on is statistics to guide their prognostications. Both my surgeon and rad onco have given me a 60% 5-year survival. Given the stats I'm kind of thinking of giving the PET scan a miss. Thoughts?

Best,

Mick

From Dr Lee:

"I almost never use the terms 'in remission' or 'cure' to describe the status of a patient.

"I believe that 'remission' is a term more often used by medical oncologists, and to me, the connotation is that there is definitely some microscopic disease remaining. We don't know that to be the case for you.

"The most solid definition of 'cure' I know: patient is cured if they die of something other than the cancer. Because there is always at least a small risk of recurrence, I don't use the term -- even though that is the goal of treatment in definitive cases like yours.

"I would classify you as 'NED' meaning -- exactly as the words say -- that there is currently no evidence of disease. We like using the 5yr NED endpoint for trials and such because, for most cancers, the vast majority of recurrences develop within the first 5 yrs. In fact, for HNSCC, 3yrs is a pretty good endpoint. Most patients who make it to 5yrs will die of something else, i.e., will ultimately be considered cured of their disease."

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

If you and I play "Chicken", and have a head on head collision and both of us don't make it, we'll be cured of Cancer ?? :)

Larry

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

What he wrote does make sense to me. Thank you for posting his response, Mick. I also got the 60% statistic, but they pointed out that was for a normal patient and not one with Fanconi Anemia. I guess it's higher for me.

Funny about the game of chicken, because I thought if I crossed the street in town and died from getting hit by a bus I'm cured of cancer. Lol

I do understand why they are not giving me a PET scan. It's just there is a part of me that wants to hear that NED. Sort of gives you the all clear, for now sign. Clean PET is no guarantee it won't come back, either so I guess I'll just keep chugging along and try and hit that five year mark. :). Hopefully longer.

timreichhart
Posts: 195
Joined: Aug 2010

Well right after my last treatment (done in august) the doctors waited about 2 months which I had a PET scan last month and the chemo doctor said he didnt see any traces of cancer but wanted to keep a eye on it by doing PET scans every 6-8 months for the next 3 years to make sure it wount come back but he never said anything about going into in remission or ned.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Dawn. I've been reflecting today about a line from the film Shawshank Redemption that has a great deal to say about acceptance and endurance: get busy living, or get busy dying. I'm choosing the former. If I get to choose how to go I'd rather choose a game of chicken on pogo sticks with Larry than cancer, but in the end I can't really get busy living if I'm worried about either.

So we're in the 60% club! I can't think of a *sweeter* clubmate.

Best,

Mick

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I really like that whole, get busy living or get busy dying thing. I've definitely been trying to do the former as well. :) Definitely a good motto. I might be stealing that quote for a facebook status. Lol

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Good one. If I want to cured of cancer all I need to do is die from something else. The real thing is time. The longer we hold out the better the stats are. I found this definition of remission on medicinenet.com:

"Disappearance of the signs and symptoms of cancer or other disease. When this happens, the disease is said to be "in remission." A remission can be temporary or permanent."

Sounds like NED to me.

Best,

Mick

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

I guess you could say I am just dyeing to be cured, anyway I am now worried because March 2011 makes my five years, just hope I don’t get ran over by a train.

Take care my friend

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey my friend I can understand the worry what with the photos that will circulate when you do the eeeeeeeeeeeeeeeee pogo stick feather dance!

Best,

Mick

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

I suppose in the end, these are all terms we invent which cancer totally ignores, darn it. I just want it to be gone. Forever.

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