• What does "the staging" of your cancer determine and what do the numbers mean?

    Asked by dvdbriansr on Sunday, October 21, 2012

    What does "the staging" of your cancer determine and what do the numbers mean?

    I have yet to get the complete report of my PET scan from my Oncologist who I won't actually see for another week. I was told by my nurse at Chemo therapy that my cancer was stage 4, but, what does that REALLY suppose to mean to me. I know 1 is better then 2, and 2 is better then 3 and so on, so does that mean that stage 4 is the worst? I also know that my cancer has affected my 'lymph nodes' so does this mean that I'll get radiation exposure to two different sites? Will this be a separate issue to the treatment? I mean just when I "thought" I was coming to terms with and understanding what I was dealing with they go and throw all this into the mix and change the game on me, and then give me yet another week to wonder what's next? (Pardon the pun.) When, where and how does it all come to it's end?

    6 Answers from the Community

    6 answers
    • Peroll's Avatar

      Dvd, stage IV means that the cancer has spred beyond the original location in your case it appears to be alymph node. Typically with cancer in more than one location they tend to use chemo to hit the whole body; however, each case is different so you might get a different treatments. My experience radiation is easier than chemo, but every one reacts different. You should also know that a PETscan can have things light up that are not cancer. I had a torn rotator cuff light up on one PET scan. You need to ask questions about this lymph node that lit up. It may pay to have it biopseied to be sure. They may decide to monitor it for a while to see if it grows. If you have more question about this answer let me know. Good luck.

      almost 6 years ago
    • FreeBird's Avatar

      I understand from your previous comment that they told you "Well-Differentiated Squamous cell carcinoma of/in the pharyngeal wall (FS1), left tonsil (FS2)" and now staged at 4.

      Two of the best places to start looking for basic information on your cancer are the National Cancer Institute, and the American Cancer Society. cancer.gov and cancer.org

      I'm guessing this is the right page for you, but you could also check with them to be sure. http://www.cancer.gov/cancertopics/pdq/treatment/oropharyngeal/Patient/page1/AllPages#Keypoint13 It's a summary of oropharyngeal cancer, that includes staging and information about standard treatments that you may receive. It looks like there are different sub-stages for your cancer. 4a 4b 4c

      Regardless of the stage, it means you are moving forward in a more positive and proactive direction than if you did nothing at all. Trying to learn exactly where you stand, where to hit the cancer where it hurts, and what you need to know in order to make the best decisions is an important step. Lots of waiting to find out what next.

      almost 6 years ago
    • nancyjac's Avatar

      Generally, stage 4 means that a cancer has spread either through you bloodstream or though you lymph system to another organ besides the primary or original site. Treatment is individualized and not a single standard based solely on the stage of your cancer. Radiation to one or more sites may or may not be part of your recommended treatment plan.

      Unfortunately, for your own well being and sanity, you need to get past the notion that this is black and white situation with a definitive start and end. Cancer is messy and often unpredictable. It doesn't come to an end. Cancer is not just a game changer, but a life changer and often there is end in the sense of being done with it and going back to some pregame normal. We all find our new normals in the course of our journey through cancer, and for many of us, we do that over and over again. I don't say this to be negative, quite the contrary. Once you accept that it doesn't all come to an end and that you will never be they same as your precancer self, you can feel very liberated to define the rest of your life.

      almost 6 years ago
    • Mark007's Avatar

      I was told that my cancer was stage 4 because it had spread to the lymph nodes in my neck. I had a very "aggressive" chemo regimen, then radiation to my neck which took care of the tumor and the cancer cells in the lymph node. I asked my oncologist the types of questions you are asking and he was very upfront with me regarding the recommended treatment, potential side effects, and the time line for all this to happen. Good luck to you.

      almost 6 years ago
    • jdub54's Avatar


      FreeBird is spot on. I'd also add the NIH to my list of places to explore.
      NIH will have stats and other things that can be scary....but you already know it is scary stuff, so why not gather all the intel you can, I say!

      One caveat:
      Stage IV does not necessarily mean it has spread, staging is EXTREMELY specific to your exact cancer and location and thickness etc. ......... , i.e., my initial nasal melanoma was called stage IV before my surgery even occurred; with melanoma, any internal first tumor (as opposed to the more normal skin version) makes you stage IV even if there are no distant metastases present. So, go to NIH and NCI and look at the staging guidelines. Then, in a non-threatening manner, ask your oncologists any and all questions; it is your life, money, and insurance, and if you are professional and clearly knowledgeable and make it obvious that you know your s**t well, they will respond in kind. Or at least that is my experience, be it my primary oncologist (a researcher), or my secondary opinion oncologist (chief of Melanoma at one of the top 5 facilities in the U.S).

      Hang tough, and good luck!

      almost 6 years ago
    • jdub54's Avatar

      While we are on this topic, I noted that you have not gotten the report on your PET. Let me make this very clear: YOU ARE ENTITLED TO ALL TEST AND SCAN RESULTS AS THE PATIENT, they are your records. You are NOT required to wait for the doctor followup visit before you can have your results. Many places say that, it is a lie, force them to give it up.

      The testing centers and labs must be asked for this; if they did not get asked when the tests were performed, call them NOW and get the release form faxed to you. You may have to fax back a copy of your drivers license as proof of ID along with the completed form. They will want to mail it, but I've seen that take up to 2 weeks, and the results are always done in 2-3 business days. I make the lab company fax me my blood results within 3 days; I take a disc copy of my CTs or PETS with me as I leave every imaging visit, then I get the written report sent to me also (also by fax). Fill that release form out while you are at the lab/clinic/center. Now, states can differ on how the results can be disseminated (fax or email) and on what level of privacy/security they use, but you are ENTITLED to it, and then you are better prepared when you DO see your oncologist. I can ask specific questions about blood values that are low or high (you can find an explanation guide to blood test results on line), and I have made Radiologists correct errors in reports (like calling a congenital liver defect I have "concerning for cancer based on patient diagnosis" when it will NEVER be a tumor. I have also found that at a teaching hospital system (where all my scans get done), they will and can note things that are already known as new; knowing your test results from the past will catch these errors (I made the radiology chief get reports re-written to account for already seen non-issues, and had him monitor all reports for a while after that). Does this make me a pest? Sure-so I often hand a sheet to the techs when I have scans done, addressed to all radiology interns/fellows/attendings, telling them about all the pre-existing items that might get misread, and telling them to review all previous results before writing the new analysis. Again, it is teaching hospital system, so there are varying degrees of knowledge and experience; an attending must sign off on the student's results, but the attending (also rotating through) has been known not to catch the variations that are really not changes, from test to test each quarter. Thus, I watch the experts, and they do more accurate work.

      A good doctor of any kind will appreciate your position, and your need for accuracy; if they don't like it, shame on them, get new doctors/radiologists. Talking to department heads/chiefs will accomplish that, especially after they have already oopsied reports a time or two. Having a chief apologize to you for sloppy work by interns and attendings, will result in all future hands on your testing being more careful.

      I sound like a pain, but I am not-I will only survive by catching genuine changes early and addressing them surgically. The past errors that were false actually caused my employer (the FAA) to resist letting me back on my job (a safety position), until I got the bogus info retracted. It matters to you; it MUST matter to the docs who you depend on, or you must MAKE them care. A well informed patient, allowed to be a part of decision making for the patient, will make for better and more acceptable outcomes.

      End of rant. Be your own advocate, and be firm about your right to know and understand. That will let you make the best decisions for YOU, based on your circumstances.

      almost 6 years ago

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