Terminology and abbreviations

[Terry]

I thought I would post our list made up from our dear friend Justsing.

I think those of you who are new would really appreciate this list.

[Pam Mcall]

a few additional definitions that may be seen by patients
RFS=relapse-free survival, time to any event regardless of cause except second primary cancers
TTR=time to relapse, time to any event related to the same cancer
TTF=time to treatment failure, time to any event except non-cancer related death
CSS=cancer specific survival, time to death from same cancer
OS=overall survival, time to death of any cause
E=event, C=censor, I=ignore
for more information see:http://www.medscape.com/viewarticle/561060_3
PR=partial response, 30% or more decrease in target lesions
SD=stable disease=minor changes not meeting other criteria
PD=progressive disease= 20% increase in target lesions
for more information see:
http://imaging.cancer.gov/clinicaltrials/imaging/
http://ctep.cancer.gov/protocoldevelopm ... deline.pdf

[bz45]

I'm a newbie to this board and just want to thank everyone who has posted here. It's enormously helpful. Thank you.

[Canuck]

My first days with colon cancer. I just had my Meet and Greet with the Chemo Nurse, and this abb. text is invaluable. Thank you so much

[goofytc]

thanks so much! this was VERY helpful!

[niknak1010]

Thanks so much for this. We've been pretty lost in all of the medical lingo, this is a huge help.

[Steve Marethyu]

This is a really helpful list. Thanks for putting it together.

I do have a question, though. Shouldn't APR say abdominal perineal resection, instead of anterior?

[CRguy]

...Shouldn't APR say abdominal perineal resection, instead of anterior?

Yes, the term APR generally refers to Abdomino-Perineal Resection (abdominoperineal resection)
The thread, I believe, is not currently being "actively moderated" since our dear friend justsing passed away.

Cheers on the Journey
CRguy

[drose]

Excellent ! Thank you

[Guinevere]

Can we add rectumectomy=proctocolectomy?? Way more fun to say!

[CRguy]

Can we add rectumectomy=proctocolectomy?? Way more fun to say!

Ah, Lady Guinevere, if tis fun you desire, then I submit for your approval the following thread from days gone by, Here

[Guinevere]

Totally missed this thread!! It rightly belongs on that one rather than the serious one. Thanks, CRguy!

[Gaelen]

If you're looking for information on initial staging, the T-N-M system that determines stages 0-IV in CRC is described in the first post in this thread.

When it comes to staging for recurrence, or staging after complete/partial responses to either chemo or radiation, staging can get a little confusing. Just to clear up a few things:

- Clinical stage is most often the one used to determine a course of treatment (NOT stage after surgery, unless during surgery the doctors find MORE disease than they anticipated.) Typically, people are NOT downstaged after surgery.

- Recurrence does NOT mean your original stage changes, or you're "upstaged" to stage IV. By extension, that means there is no "stage 3.5." If a patient originally diagnosed at any level of stage III recurs, s/he becomes stage III, recurrent.

The American Joint Committee on Cancer analyzes the course of cancers and defines initial, clinical, pathologic and recurrent staging. I can't quote the AJCC manual, because I don't have it, but the American Cancer Society | Treatment | Understanding your Diagnosis | Staging page puts the AJCC staging guidelines into plain, everyday language. One area of confusion, mislabeling and miscommunication for patients (and apparently, for some doctors) is staging after recurrence or staging after a complete/partial response to either chemo or radiation.

According to the AJCC and ACS, if you were originally staged from Stage 0 - Stage III, you don't "move up" or "graduate" to Stage IV if you experience a recurrence. You are also NOT downstaged if chemo or radiation shrinks your tumors. Your original diagnosis, based on clinical staging, is how your records go into the Centers for Disease Control, and they are only adjusted if you become recurrent.

From the American Cancer Society's page on staging:

A cancer's stage does not change

An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, only information about the current extent of the cancer is added.

For example, if a woman were first diagnosed with stage II breast cancer and after the cancer went away with treatment it came back with spread to the bones, the cancer is still a stage II breast cancer, only with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it is called a stage II breast cancer with metastasis in the bones. In either case, the original stage does not change and it is not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

At some point you may hear the term "restaging." Restaging is the term sometimes given for doing tests to find the extent of the cancer after treatment. It may be done to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. Rarely, after these tests a new stage will be assigned, written with a lower-case "r" before the new stage to note that it is different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, although it is more common in clinical trials.

In addition to survival stats and clinical trial eligibility, the other thing that can be affected by what staging is used to discuss your case is what surveillance technology (blood draws, scans, scopes) your insurance company will approve. In their earliest releases, some drugs are only automatically approved for refractory stage IV (recurrent or drug resistant stage IV). Since your case is coded by insurance as whatever your original stage was + "recurrent," they may not approve you for that early release drug or extra screenings above what's authorized for your initial stage (at least, not without a denial and appeal.) OTOH, you may be more eligible for late stage (Phase III) clinical trials since your original dx was at a lower stage.

I've heard lots of patients say that the doctor or oncology nurse said "now you're stage IV."
According to the AJCC and ACS, that's not correct. As patients we need to be careful that when the doctor says "your treatment will now be as if for stage IV," we don't translate that to "now I'm stage IV."

Some common situations:
- Sometimes during clinical staging, distant mets are missed, but if surgery is within a few weeks of the original dx, and the surgeon can see/feel the liver, lung or other organ or nt lymph node mets, then the patient is UPstaged. However, if there's a case of a missed met with a long time (like a year) between original staging and met discovery, the patient is usually kept at the same stage as clinically diagnosed.
- In rectal cancer, radiation may shrink the tumor and lymph nodes - but that does NOT downstage the patient, nor necessarily change the post-op treatment recommendations which are based on the (higher) clinical stage.
- Chemo may cause the tumor to disappear prior to surgery - but, like radiation, that doesn't downstage the patient. It's just a good response to chemo that can make surgery easier.

Apparently some of the education we need to do about patient communication is to remind docs that they don't need to inaccurately dumb-down information about staging so that patients can grasp the ramifications of their new treatment plans and prognosis.

But remember - YOUR ORIGINAL CANCER STAGING DOES NOT CHANGE, no matter whether your disease progresses or resolves. If your cancer progresses, you become listed in the US national cancer records as original stage + recurrent. If your cancer resolves, you become listed as NED, or in remission, or in lower stages, considered cured.

[PamT]

Thank you to all who have posted terminology and port information. My mother will begin chemo in the next 3 weeks. The informaiton I have read has been very helpful.

[Gaelen]

U.S. patients: Ever wonder how your doctor chooses how to treat you, what your scanning and follow-up recommendations will be, etc.?
This is a downloadable (or read online) booklet that describes the National Comprehensive Care Network (NCCN) protocols for colon cancer treatment, just released February, 2012. Your doctor works from the NCCN Clinical Practice Guidelines in Oncology; this booklet puts those guidelines in to patient-friendly plain English.