Explain Cure vs NED vs Stable & Others

[MyWifeSCLC]

Another thread prompted me to ask someone to explain the following as it relates to lung cancer.

Cure, NED, Remission, Partial Remission, Complete Remission, Stable, Progressing

Steve

[Tom Galli]

Steve,

I looked up these words on Lungevity.org’s glossary and all were undefined except for NED. It was cited as an abbreviation for No Evidence of Disease. So I put out the question to several oncologists that I know and if they answer, I’ll post their definitions.

Stay the course.

Tom

[Rower Michelle]

That would be great Tom!  I know that there is no cure for ALK, so having an interpretation would be helpful!   

[MyWifeSCLC]

CURE

"Googling" variations of the words cancer and cure tend to come up with the phrase "cancer free after 5 years". However, there is no specific definition for the word cure as it relates to cancer. Some articles suggest that some doctors use 5-year survival rates and the word cure as a means to "suggest" you most likely will not get cancer again.

Tom Galli has mentioned many times that we don't use the word cure when it comes to cancer and that seems very appropriate. I would suggest that when an oncologist or any other doctor says cure when talking about cancer that the patient asks what does that mean. I suspect that the doctor will then begin talking about 5-year survival rates.

My wifes onc used the word cure many times up until it was evident that her cancer was not disappearing fast enough. This may be because the NCCN guidelines have the word curable (I think) used when it comes to stages I through III.

Steve

[Tom Galli]

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap. I will also post these in our Lung Cancer 101 section so we can have an easy reference:

Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later.  Mostly applies to non-melanoma skin cancers.  Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence.  I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions.

5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure.  Most commonly used term now and has supplanted the use of term "cure".

No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy].  This is a point-specific-term, and is good, but does not guarantee anything long-term.

Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing.

Several sub classes of remission:

• Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm.
• Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term.
• Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”).
• Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients. 
• Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery.

Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant.  Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy.

Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy.  If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures.

There are three other terms used for surgery results: R0, R1, and R2.  These describe visual and pathologic review of the resected cancer specimen.  

• R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery.
• R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area.
• R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").
   

 

[LexieCat]

Thanks, Tom, and thank your expert for the cogent explanation--it was very clear. It also suggests, I think, that we should continue to ask our doctors what THEY mean when they use the term(s), just to ensure we understand what they are saying.

[ColleenRae]

I agree. I am one of those patients whose surgeon was pronouncing "cured" following my surgery in Oct 2018.  He used this term when I asked him how do I define my "status"... I went into surgery not knowing if the tumor was indeed cancer. I came out of surgery knowing it indeed was cancer but it was removed and no further treatment was required. I didn't know how to define that... Surgeon said "You say you are cured!" with a big smile. I think he meant well and meant to be encouraging.  If I recall, Teri / Lexie, you gave me some good advice - to say I had cancer that was removed and was now being monitored.

I admit I never really bought into that; never trusted I was "cured". Kinda glad I didn't as, one year later, we find ourselves following a new suspicious area in the other lung. That certainly didn't make me feel "cured"!  I wasn't trying to be pessimistic, but realistic as to what I might face in the future, so it served me better to not claim (or believe) I was "cured". I hoped I was, but I wasn't that naive. I don't think I will ever really view cancer as "cured".

Actually called yesterday to see if I could move up my next scheduled lung CT and they are able to get me in this afternoon (yes... on a Saturday!). So, I have had less than 24 hours to deal with my scanziety... appt is in about 90 minutes. I was scheduled for next month, but need to make a decision as to whether or not to go forward in buying a home by Thursday of this week.  My surgeon told me to not be afraid to buy - he has been very relaxed about this new spot - but I find I am growing increasingly anxious. If this has shown significant changes since my CT in March, and I am going to require treatment, then I'm not sure I want to proceed on the house and will back out.  I know there are no guarantees.  I'll be going through this again in 6 months if nothing changes this time around. I hate the way I'm letting cancer direct the decisions in my life. I don't even want to consider it

Lexie... I believe you have a biopsy on Monday... Been thinking a lot about you and wanting the best news possible for you.

[LexieCat]

Thanks, Colleen, and good luck with your CT today. Yeah--nice when it's quick and you don't have a whole long time to think about it. You should have the results in a couple of days at most. I hope it's good and you can go forward with your house!

 

[MyWifeSCLC]

Excellent stuff Tom and thanks.

Steve

[Tom Galli]

CollenRae,

I've got all my fingers and toes crossed for a NED scan.

I think you are right about lung cancer uncertainty and a future. My new-normal future horizon is tomorrow.  Even after nearly 16-years, I'm still just one scan away from mayhem. Frequent recurrence is why lung cancer is so dangerous.  

I always cheer for folks who are early diagnosed at stage IA or B, and who have a successful surgical outcome. But recurrence statistics for this stage after surgery are 33-percent. That is just a couple points lower than a very successful baseball player's batting average. Moreover, I hope they are monitored after surgery but many never see a medical oncologist. Therein is the problem. I do hope we continue to realize NED is great but not finished, especially in our community.

Stay the course.

Tom

[ColleenRae]

19 hours ago, MyWifeSCLC said:

Excellent stuff Tom and thanks.

Steve

Yes... Thank you for such a clear and understandable post, Tom.  Appreciate you taking the time to gather this info for all to use.

[Deb W]

Thanks, Tom.