• Staging -- confusing

    Asked by Jalemans on Friday, August 1, 2014

    Staging -- confusing

    With cancer people talk about "stage". My onc gave me "Stage 1B, level 3". They really emphasize the level & mine is the highest. There also is a lot of fuss about the huge size of the tumor. Basically for me, there was only the 1 tumor, but the cancer cells are in my blood vessels. Lots of people comment that I am "only" stage 1, like it is gone or something.

    My good friend had just been diagnosed with uterine cancer also stage 1 & had hysterectomy. She requires no treatments or anything (glad for her!). But, how can we be at the same "stage" when I am going thru treatments to try to get the cancer out & I have a 70% chance of recurrence which will be resistant to treatments? Plus, I have this stuff going on with my thyroid & now liver?

    The annoying answer is that there is different scale for staging leiomyosarcoma from what I have read. I certainly don't want to be more ill, but I suspect this had an impact with my disability claim. It is just confusing enough already.

    13 Answers from the Community

    13 answers
    • cam32505's Avatar
      cam32505

      I had stage IIIC, grade 1 uterine cancer. This means that my cancer had spread outside the uterus (ovary and 1 lymph node). But, the grade is low, which means it is less aggressive. Yours was caught early (stage IB), but it is very aggressive because your grade is 3, which is the highest grade (the one time in your life you don't want a high grade). Most people with stage 1 uterine cancer have hysterectomy and they're done. My friend had it last year. She was done right after surgery. I don't even think she has to follow up as often as I do. I also had thyroid cancer. I do think there is some relationship to thyroid and female cancers. They're both related to hormones, which we seem to need, except when we have cancer. Sorry that yours is so aggressive. Hopefully, you will be in a nice long remission when you complete your treatment.

      about 5 years ago
    • glam's Avatar
      glam

      I am stage IV B colon cancer survivor which means that is has spread to more than one organ and at least to one distant organ.....the B is due to the size of my tumor....nobody told me about levels when I was diagnosed so maybe it is related to how aggressive it is as explained above.....if you are not ok with the explanation your doctor gave to you, please ask again and again till you are able to explain to yourself and to others the disease, stage and treatment.....if you can't so ask for a second opinion....In my case I had to ask till the fourth opinion.....wishing you all the best....God bless you and continue blessing all of us

      about 5 years ago
    • Ejourneys' Avatar
      Ejourneys

      I agree with @glam -- ask your doctor to explain the terms. My breast cancer is 1a (no lymph node involvement and clear margins), grade 2 (1.8 cm tumor), but I am on chemo due to my age (55) and recurrence score (22, intermediate). As my oncologist told me, the aim of chemo is to eradicate the cancer, whereas in the case of recurrence the best we could do would be to manage it. Adding my wish to @cam32505's for a long, post-treatment remission for you.

      about 5 years ago
    • Judt1940's Avatar
      Judt1940

      The level 3 or grade 3 is more aggressive. I'm stage 2 grade 3 (level 3 or c). No lymph involvement or I would be a stage III. My oncologist referred to it as " bad actor". I have serous uterine. It's the blood involvement with you that is confusing I would think. Have you heard on the liver thing yet?

      about 5 years ago
    • Judt1940's Avatar
      Judt1940

      Got to tell you if I were your friend I would be worried about no further treatment.

      about 5 years ago
    • lilymadeline's Avatar
      lilymadeline

      You're absolutely right, that the seriousness of staging really entirely depends on the type of cancer.
      My own experience with this is that I had a stage 1 aggressive uterine cancer that was almost as serious as my stage IV slow growing breast cancer.
      So ask your oncologist for precise answers, have him or her tell you the importance of your individual diagnosis, staging, and grading! That will give you a clear picture of what is going on and how aggressive your treatment needs to be.
      And it is a pain explaining this to others!
      Good luck to you and God bless!

      about 5 years ago
    • lilymadeline's Avatar
      lilymadeline

      P.S. Since we both have uterine cancer I had to comment on something else that people often assume. I have noticed that people assume it is an easy cancer and that you are 'lucky' to get it because they can just cut it out with a hysterectomy. WRONG! There are some very aggressive and difficult to treat uterine cancers....as unfortunately you know! But you can and will beat this! I did! XOXOXO

      about 5 years ago
    • kalindria's Avatar
      kalindria

      EJourneys - just wanted to say that they're still doing studies on predictive scoring in ovarian cancers so it might not be helpful to other patients to assume all cancers get scored for recurrence. Here's one of the studies: http://www.ncbi.nlm.nih.gov/pubmed/21270612

      Your comment made me go "Huh? Something ELSE I haven't heard about!" only to find out that they don't really do that with my cancer. Besides, I'm stage IV and I've been told that it WILL come back. I think that's 100%. My job now is to delay that recurrence as much as possible.

      about 5 years ago
    • Janetspringer's Avatar
      Janetspringer

      I had a doctor tell me not to fixate on the number. Even with the stages, cancer is different for each person. I am stage IV. A friend was 3b. She has had a much harder time. My doctor told me cancer has a mind of its own. In other words, it is not always predictable.

      about 5 years ago
    • Ejourneys' Avatar
      Ejourneys

      @kalindria, thanks for the info. One more way in which cancer is so multifaceted and insidious. I hope they can develop good/better predictive tools, and that your recurrence is long, long delayed.

      about 5 years ago
    • kalindria's Avatar
      kalindria

      Thanks, Ejourneys - I hope so too.

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      I think the staging gets all confused multiple cancers are involved. I had a very large tumor in my uterus that had pierced the lining. I also had esophageal tumors in the ovaries and uterus, the lymph nodes were affected however the lymph nodes had esophageal cells. So with me the esophageal cancer got the higher rating (IV) and uterine cancer got a IIIb. Since I had two kinds of cancer they decided that they couldn't get a chemo treatment that could kill both cancers and leave me alive. So the doctor went to plan wait and C.

      about 5 years ago
    • MsMope's Avatar
      MsMope

      Cancer is not socialist. Cancer is not fair. That's why you can't compare your cancer, your treatment plan or your experiences to anyone else and expect to see the exact same results.

      Some of us with endometrial cancer have a high grade cancer. The American Cancer Society explains grading on its site. I have a high grade (Grade 3) endometrial cancer - uterine papillary serous carcinoma. You have a different high grade cancer.

      There is also an endometrial cancer type. It's explained on the ACS site. A Grade 3 endometrial is apparently also know as Type 2 cancer. I just call my cancer "Bad Luck Cancer" because nobody knows what causes it and it readily recurs elsewhere in the body.

      Many endometrial cancers (low grade) can be eliminated by removal of the uterus. Bingo! Bango! You're done! Those of us with higher grade cancers are not that lucky. Those of us with cancers that have migrated from the uterus are not that lucky. That's why the name of the cancer, the grade of the cancer, and the stage of the cancer determines the treatment plan.

      If you're confused, don't be. The easy way to end your confusion is to call your oncologist's office and ask for explanations until you're no longer confused. IMO there is no excuse for your confusion. It's one of the few problems related to cancer that you can control.

      about 5 years ago

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