Terminology question

Cora11

Does anybody understand how doctors use these terms and the distinctions between them?

NED- as in no evidence of disease

Clean Response

Remission

"disease free"

"cure"

Just wondering if this has been clearly explained to anyone. Would appreciate some insight
Cora

Unknown

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BobHaze

unknown said:

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"Cured" is a tough word
I know for myself, when I met with my surgeon 3 weeks post-op he told me that the margins in all excised tissue were clean, as were all 28 lymph nodes he removed during the procedure. We knew going in that I was early Stage 1, but still this was obviously a huge relief to hear. But when I asked if I was now cured, he replied, "Cured is a tough word for doctors to use when it comes to cancer, but I'd say you're as close to "cured" as one can be." So even though the surgery had been a success, all margins and lymph nodes were clean, and the post-op chest xray and CT scan were all clean, he wouldn't say I am "cured." I'll certainly take what he did say, but I can also relate to what William said and I know I'm going to be quite anxious every time I go in for a follow-up (next one is in January). But for now I'll take what I've got, and that is clean test results.

Good luck Cora. The only technical term that I know applies in all our cases is that EC "sucks!"

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11 at Mass General Hospital

chemosmoker

NED will never be my friend as he is too present for my stage
My 2nd oncologist says "cured" and then defended it to me using that word, specifically!
I didn't trust that right away. Caution flags everywhere.

Later, after $10,000 pathology more, she refused to use 'cure' or 'fix' or anything but palliative care options, and the GREATEST thoracic surgeon in the Tennessee, or south, as it was said to us, cancelled my appointment without even calling me himself or returning my three calls early on! Would NOT see me, refused, I called and asked.

So they had a secretary call me and say "There's no need for the doctor to see you anymore, so that appointment has been cancelled" Being told "You're not worth it" or the investment won't help YOU, you are not worth the effort or trial...but....
Like so many elderly friends I have now who have been told you are too old for the liver or kidney you would need to survive whatever the REAL issue to be addressed is that is now NOT being addressed because, as I said you get told "you are not worth it."

I got an oncology and pain management team and got offered a trial and FOLFOX and maybe an extra 2 months or even a wow wow wow maybe a year more, and then, guaranteed immunity from chemo for what I had, HER2NEU and so no Herceptin and so on and so on.......

I am so grateful to be alive and doing SO well after their 6 month mark. There have been roadblocks, but we have fared well I think I wake up feeling good other than the pain management I feel like I did before diagnosis I just know too much and now have this 10+ pounds of fluid coming and going as my liver hates mets, but the steroids and others are helping with the pain. THANK YOU SHERRI!! LISTEN TO HER NEWBIES!!!!

What was I saying? Why?

God bless you all!
Eric

NikiMo

The elusive cure....
Hi Cora,

So you know that NED meanes they can't see any cancer through diagnostic tests...but does not mean you are cured or that there isn't an errant cancer cell floating around. For something to light up on a scan you have to a good number of cancer cells metabolizing, if you have little tiny guy floating around they aren't going to see it. Cancer is NOT a defined science, that is what I have learned through this journey. Everything depends on the interpreation of the doctors. For instance Jeff had 4 questionable nodes 3 weeks before surgery (2 new nodes lit up on the post-chemo PET scan and 2 had been enlarged on the CT scan since diagnosis but never lit up on a PET). This means that through diagnostic tests he had nodes that appeared to be diseased and even then the doctors couldn't agree...oncologist thought false positives on the PET scan, surgeon thought cancer but was taking them out anyway becuase they were in the field of surgery. Skip to the pathology report after surgery...all nodes retrieved were free of cancer. The surgeon thought that the chemo must have killed the cancer cells from the time the PET scan was ran to when his hands pulled them out. The oncologist said "I told you so!, No cancer in those nodes." That leaves Jeff and I wondering if the cancer ever made it to the nodes...we are praying that it didn't but we will never know for certain. The only true test is a biopsy, everything else is conjecture.

From what I have read is that remission and disease free are antiquated terms in the field of oncology. When my grandmother had lung cancer in 1987 they used the word remission (which lasted 11 years). Today the more common term is NED. I think is has to do with the doctors not really feeling like they have the diagnostic tools they need to tell you something is in remission, they would rather say "I can't see signs of the disease on this scan...so No Evidence of Disease".

Now for the trickest of terms...cured! So I have spoken with many doctor's at this point and they seem to use that term in very different manners. One oncologist told Jeff he "had a better chance of cure than no cure", another oncologist said that Jeff had "potentially curable disease", and another said "I never use the word cure so I am sorry but you won't be hearing that from me". In the end I don't think it really matters. Either you have detectable disease or you don't have detectable disease. As long as you have your check ups and the don't see cancer I think that is a win. They told my Grandmother she was cured after 5 years (that is the general length of time), the cancer came back 6 years later. There are just no gaurantees in life, all us of know that for sure!

I don't say any of this to bring you down, Keith can go on to live 20,30,40 more years and you may never hear the word cure, but that is ok becuase he will be there to say 'I am a cancer SURVIVOR". In the end it is all just words.

Hugs and I hope that today is better then yesterday, and tomorrow better than today

Niki

Cora11

NikiMo said:

The elusive cure....
Hi Cora,

So you know that NED meanes they can't see any cancer through diagnostic tests...but does not mean you are cured or that there isn't an errant cancer cell floating around. For something to light up on a scan you have to a good number of cancer cells metabolizing, if you have little tiny guy floating around they aren't going to see it. Cancer is NOT a defined science, that is what I have learned through this journey. Everything depends on the interpreation of the doctors. For instance Jeff had 4 questionable nodes 3 weeks before surgery (2 new nodes lit up on the post-chemo PET scan and 2 had been enlarged on the CT scan since diagnosis but never lit up on a PET). This means that through diagnostic tests he had nodes that appeared to be diseased and even then the doctors couldn't agree...oncologist thought false positives on the PET scan, surgeon thought cancer but was taking them out anyway becuase they were in the field of surgery. Skip to the pathology report after surgery...all nodes retrieved were free of cancer. The surgeon thought that the chemo must have killed the cancer cells from the time the PET scan was ran to when his hands pulled them out. The oncologist said "I told you so!, No cancer in those nodes." That leaves Jeff and I wondering if the cancer ever made it to the nodes...we are praying that it didn't but we will never know for certain. The only true test is a biopsy, everything else is conjecture.

From what I have read is that remission and disease free are antiquated terms in the field of oncology. When my grandmother had lung cancer in 1987 they used the word remission (which lasted 11 years). Today the more common term is NED. I think is has to do with the doctors not really feeling like they have the diagnostic tools they need to tell you something is in remission, they would rather say "I can't see signs of the disease on this scan...so No Evidence of Disease".

Now for the trickest of terms...cured! So I have spoken with many doctor's at this point and they seem to use that term in very different manners. One oncologist told Jeff he "had a better chance of cure than no cure", another oncologist said that Jeff had "potentially curable disease", and another said "I never use the word cure so I am sorry but you won't be hearing that from me". In the end I don't think it really matters. Either you have detectable disease or you don't have detectable disease. As long as you have your check ups and the don't see cancer I think that is a win. They told my Grandmother she was cured after 5 years (that is the general length of time), the cancer came back 6 years later. There are just no gaurantees in life, all us of know that for sure!

I don't say any of this to bring you down, Keith can go on to live 20,30,40 more years and you may never hear the word cure, but that is ok becuase he will be there to say 'I am a cancer SURVIVOR". In the end it is all just words.

Hugs and I hope that today is better then yesterday, and tomorrow better than today

Niki

THanks for this discussion
I find this all very helpful. Ironically, I think because Keith is a doctor, even though we ask our doctors not to assume we know everything, they still talk to us differently. Meaning they just don't explain things always in the detail that they would non-professional patients. And I think EC sits in it's own category of cancer terminology which makes it more confusing at times. I think the data is still so murky that doctors treating EC are all over the map with their definitions.
Thanks again,
Cora