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What is remission?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I just read an article about a guy who says he's in remission from leukemia. What does that mean? Is it the same as NED? Or can they tell that the cancer has slowed down and is not advancing? I don't see how anyone can be in remission. So often it's just a matter of they haven't found it yet. Like NED, no evidence of disease, but it just means that they can't find it anymore. It could be gone but who knows?

I can't remember anyone on here saying they're in remission. Maybe it's a layman's term?

Thanks,

Jan

Butt's picture
Butt
Posts: 318
Joined: May 2018

I think remission and NED are the same. With leukemia as well as some female cancers they can be in remission for many years before it comes back. With colon 2-3 years are considered very critical. Butt. 

kyolcu
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Joined: Jun 2017

Remission is medical term of NED. I hope each of us will be in remission one day.

Annabelle41415's picture
Annabelle41415
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Joined: Feb 2009

I'm thinking that remission is a lesion that has not grown or spread or almost looks like it could be dormant.  NED is no evidence of disease which to me is "Nothing" there.  My cancer was removed with clean margins, didn't spread, stayed that way and I'm considered NED.  That's my understanding but could be wrong.

Kim

gul1976's picture
gul1976
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Joined: Mar 2018
  1. Partial remission means the cancer is still there, but your tumor has gotten smaller -- or in cancers like leukemia, you have less cancer throughout your body. Some doctors tell patients to think of their cancer as “chronic,” like heart disease. It’s something you will need to continue to check. If you’re in partial remission, it may mean you can take a break from treatment as long as the cancer doesn’t begin to grow again.
  2. Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

There’s no way for doctors to know that all of the cancer cells in your body are gone, which is why many doctors don’t use the word “cured.” If cancer cells do come back, it usually happens within the 5 years following the first diagnosis and treatment.

JanJan63's picture
JanJan63
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Joined: Sep 2014

Thank you so much everyone for the responses! Now I get it.

Jan

Trubrit's picture
Trubrit
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Joined: Jan 2013

that it can mean whatever you want it to mean. 

NED = To me, personally, it means 'There is NO EVIDENCE of disease, BUT, it can still be there, so don't get too comfortable'.

As for Remission, I pulled this from MedicineNet.com - Remission: Disappearance of the signs and symptoms of cancer or other disease. A remission can be temporary or permanent.    Which, sounds like NED to me.

Maybe I should start saying I'm NEDSDGTC - No evidence of disease so don't get too comfortable.  Nah, I can do better than that. I must find my own personal acronym.

abita's picture
abita
Posts: 647
Joined: Dec 2017

When is your scan? 

Trubrit's picture
Trubrit
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Joined: Jan 2013

It is a 300 mile trip, so we just planned it around our next scheduled trip to the big city. Actually, I'm going on vacation for a few days first.  I refuse to worry about it, so we will just bide our time. 

Thank you for asking, though. 

Tru

optimist777
Posts: 38
Joined: Feb 2018

Every person has a tiny bit of cancer inside them at all times, but those not diagnosed with cancer have strong immune systems that keep the cancer in check, before they have uncontrolled tumor growth.  This microscopic bit of cancer can't be seen with CT scans or blood tests. 

NED-- simply means that cancer cells can't be seen with CT scans, or blood tests at the moment in time they are given.

Remission, on the other hand for colon cancer patients is someone who has been diagnosed with cancer and treated, but show no signs of disease 3 years after there last treatment.  In other words, the treated cancer patient is NED 3 years after their last treatment.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you, you bring up another point that I'm confused about. Some people say that we all have cancer cells in our body but they may never start growing and so a person wouldn't necessarily get cancer.  I've heard Dr Oz says this, we all carry cancer cells.

My understanding is that cancer cells are normal cells that have lost their command to die after a certain amount of time. If that's the case, then technically it could be said that we all have cancer cells because normal cells become cancerous but we're not actually walking around with cancer cells in us.

There's so much out there about cancer and mush of it is a bunch of garbage so I'm not even going to try searching this.

Any thoughts?

Jan

zx10guy
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Joined: Dec 2013

From genetics discussions in your medical/biology classes, mutations occur in nature.  It's a normal course of life as things happen to cause the DNA genetic code to not replicate properly or change.  Cancer cells are cells which have altered DNA for one reason or another.  It is correct we all have mutated cells (both cancer patients and people without cancer).  It is also correct our immune systems are responsible for clearing out these mutated cells; hence the focus on immunotherapies as the new focus for treating cancer patients.  No one knows why or what conditions causes one person to be more susceptible to cancer.  Doctors/scientists do know markers or genetic traits which would make one person have a higher risk of developing cancer.  That's why there is an emphasis on genetic testing.  But no one knows why a person with no family history of said cancer, no risk factors (such as smoking) to suddenly develop cancer.

I fall into this category as there was no immediate familial history of CRC.  I have never smoked.  I've lead a very active lifestyle.  Doctors are getting concerned about the significant uptick of younger people developing CRC with no risk factors.  Many are speculating it could be from the processed foods or something in the environment.  But no one has any definite leads on what is triggering this.

So when someone figures out the actual trigger/pathway that allows cancer to develop, that person is going to be one rich and famous person.

gul1976's picture
gul1976
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Stress weaken immune system and mutated cells get activated. stress does not cause cancer but weaken immune system which can't resist and clear canserous cells. 

JanJan63's picture
JanJan63
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Thank you both. I really don't understand the colon cancer one. I did none of the things they say causes it. I couldn't eat processed foods because of having IBS. So I ate okay, was moderately physical, never smoked, did drugs or drank, really nothing that could have caused this. As I've mentioned on here before, our friends had a horse that ended up with colon cancer. A horse. They'd had him for years and all he ate was hay and grass like the rest of their horses, several of whom they'd also had for a long time so it sounds like nothing environmental. That really does not make sense to me.

I was adopted so I don't know if it's genetic although I'm friends with my birth mother and it's not in her family. My birth father, who knows. The last time I was in the hospital my nurse was telling me she has a polyp disorder that they happened to discover while checking for something else. She has to regularly go get a colonoscopy and they take out new polyps every time. What's that all about?

I've also been told that the body doesn't 'see' cancer cells so it just leaves them and doesn't try to fight them. The same as it doesn't 'see' warts. The way to make a wart go away is to irritate it enough that the body realizes it's there and deals with it. That's how wart treatments actually work. And that's how immunotherapy works. It marks the cancer cells so the body wakes up and fights it.

The human body is a mytsery. 

Jan

steveja
Posts: 41
Joined: Apr 2017

NED - There is an old aphorism, "absence of evidence is not evidence of absence".  It's  often used to refute a logical fallacy of "argumentum ignorantium", argument from ignorance.  It's all well and good that there is no evidence of disease,  but the immediate question should be "what evidence was collected?", and "what is the diagnostic value of this evidence?".

CEA levels  have poor diagnostic accuracy.  CTs with sufficient resolution will see lots of potential tumors, that must be studied over time for growth.   PET scans can often identify cancerous tumors by their glucose uptake, but not until they approach a size and density .. so the sensitivity is  good(few false positives), but the specificity is bad (lots of false negatives till tumors are large enough).

Some of the new ctDNA blood tests (aka liquid biopsy)  like CanerSEEK (Johns-Hopkins) promise only marginal early sttage sensitivity (~50% false positives) but terrific specificity (99% true negatives). meaning the test has great negative predictive value.

I might crow about being NED if a test with the reputed stats of CancerSEEK was negative. Until then, NED  mostly an argument from ignorance instead of negative evidence.

 

NewHere's picture
NewHere
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I am not sure if I will ever think myself as being cured (not sure any cancer patient can).  

My only thing is that when/if I get back to clean scans with nothing specifically ID'd as cancer causing issues, will like those times.  Right now I have cancer everywhere and about to start chemo again to knock it down.  If it shrinks it away so it does not show on scans, buy some time, I am good with that as holding serve a bit longer and being semi NED.Cool  

 

beaumontdave's picture
beaumontdave
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Perhaps NKED would be more accurate- no known evidence of disease, but celebrating a good report, or continued lack of disease seen by tests, is a thing here. Hope comes in many little things, as can anxiety and despair. Emphasizing the positive was all I had during the hardest year of my life[so far], when that damned CEA number was the only constant amid more scans, tests, and scopes than I thought were even allowed. I'm more than happy to hear anyone "crow" about what they perceive as good news, I'm sure most understand the tenacious nature of neoplasms, and the inevitable march towards mortality. It seems even carefully chosen ignorance has it's place. Hard truths arre always there to be stared down, but who wants to dwell there?......................................Dave

NewHere's picture
NewHere
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no available known evidence of disease Cool

Just had to, you set it up so nicely there Laughing

steveja
Posts: 41
Joined: Apr 2017

Hey Beaumontdave

>when that damned CEA number was the only constant

Wish mine was constant.  My CEA has been technically in the 'elevated' range with a rising trend  for over a year now.

The inevitable mortality part doesn't bother me so much as the uncertainty.  I'm caregiver to my disabled wife,... how do you plan for two very different alteranate futures?

beaumontdave's picture
beaumontdave
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Joined: Aug 2013

The cea test rose soon after the original colectomy, by increments steady until they were certain I had lesions, even when two needle biopsies didn't get a positive result. The time frame was around three years by the time they went into the liver to get the three masses out. Then the process of the rising cea, the uncertainty of the the mass, and the nearly three year interval of waiting for surgery, played out again. So I do understand the anxiety that damned number can cause. After the third surgery, my right lung had significant fluid retention, which the onc/surgeon said could likely be cancer caused. This set off a search that involved scopes both ways, needle effusions of the lung , and scans every quarter, CT followed by PET, for a year. During the course of that year I cared for my wife until she died in our living room of a brain tumor she fought for 6 1/2 years. Other than a trip to the mortuary to set up the arrangements, I couldn't plan nor think beyond the next days work, or who could give her the liquid morphine every two hours, get her to the potty chair or toilet, feed her etc. Thankfully my son was turning 20, and working with me part of the time and my adult daughter lived in the back half of the house, with my 5 young grandkids, though her schedule made things tricky. I managed to keep my business going throughout that time, but alot of that year[2015] was and is a blur, and other than putting one foot ahead of the other and going task to task, I couldn't tell you how else I dealt with it all. I'm sorry you have to deal with your situation, it's hardships and uncertainties, and I hope you have support to get you through. The one thing that kept me from being overwhelmed was simply staying in the moment, not overthinking things, or looking down that path. I wish you the best of outcomes, and the strength needed to get you through............................Dave

SandiaBuddy's picture
SandiaBuddy
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I am rather fond of "ignorance" of cancer.  It kind of relates back to my salad days post.  Any day I do not think about cancer is a good day.

Trubrit's picture
Trubrit
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Joined: Jan 2013

I am Neked - I like it, oh I like it   Rolling on the Floor Laughing emoticon (Laughing Emoticons)

Tru

NewHere's picture
NewHere
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Joined: Feb 2015

EOM

Trubrit's picture
Trubrit
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Joined: Jan 2013

That is so funny. No wonder we get on so well, our sense of humour is the same. 

Tru

NewHere's picture
NewHere
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Joined: Feb 2015

Though you should be a bit concerned if you think like me. Laughing

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