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

sweetblood22
sweetblood22 Member Posts: 3,228
edited March 2014 in Head and Neck Cancer #1
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?
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Comments

  • Greg53
    Greg53 Member Posts: 849
    Ditto
    Me too Sweet?? Never figured that one out. By the way - 100#!! Way to go. You're a keeper!! (fisherman term, there).

    Greg
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Greg53 said:

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

    Greg

    "You're a keeper!"
    Well, I'd like to think so, anyway. ;-)
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    What is my status?
    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
    micktissue Member Posts: 430
    Sweet
    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
    sweetblood22 Member Posts: 3,228

    Sweet
    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

    Awesome!
    Thank yooooou!
  • Glenna M
    Glenna M Member Posts: 1,576

    Sweet
    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

    Will be waiting to hear...
    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
    luv4lacrosse Member Posts: 1,410 Member
    NED VS EMISSION
    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
    Skiffin16 Member Posts: 8,305 Member
    Google
    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
    oldcamper Member Posts: 27
    Skiffin16 said:

    Google
    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

    based on what I was told
    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
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Google
    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

    Hi John
    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
    HAWVET Member Posts: 318
    Hondo said:

    Hi John
    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.

    This is a very good
    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.
  • Glenna M
    Glenna M Member Posts: 1,576
    oldcamper said:

    based on what I was told
    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

    Kevin
    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
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    My own best guess...
    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
    MarineE5 Member Posts: 1,030 Member
    Good Question with good replies
    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
  • Hal61
    Hal61 Member Posts: 655

    Awesome!
    Thank yooooou!

    "Resonable expectation"
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Hondo said:

    Hi John
    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.

    Life Insurance
    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
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    MarineE5 said:

    Good Question with good replies
    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

    Thanks for the posts. Can't
    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
    Hondo Member Posts: 6,636 Member

    Thanks for the posts. Can't
    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.

    Sweet
    Please when you ask you RO let us know the answer

    Take care
  • micktissue
    micktissue Member Posts: 430
    Hey Keeper
    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
    CajunEagle Member Posts: 408

    Hey Keeper
    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."

    So Mick,........
    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