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.