Who makes the final call?

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lwarstler
lwarstler Member Posts: 341

OK, I am wondering who makes the final call on the stage of your cancer. When we learned the cancer was in an internal lymph node that was enlarged my doctor told me that meant I would now be a IIIa instead of a stage I. I was devistated at the time but got over it. Today I was reading through the copy of the latest pathology report after surgery and it says stage IIb. I looked on nccn website and it did says that enlarged internal node meant node stage was n2 and that is IIIa, but wouldn't the pathologist know that? I know it's only like a half a stage difference and doesn't change anything about how it is treated but I have been looking at this as a IIIa (like the doc said) but that was before the surgery, so will this change the original diagnosis to IIb?

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  • slousha
    slousha Member Posts: 312
    edited September 2011

    Hi,Iwarstler

    I was also staging me from II.a - as said in 2009 - to III.a because of 7 infected armpit nodes.

    We shoudn't badger us with this matter, because both are considered early stage.

    Best wishes and take care!

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Yeah I am not sure. My doc says I am stage 3 as I have mentioned before, but the doc reading my pet/ct says stage 4 because of the location of a node, he says it is mediastinum. doc says it is internal mammary node, so I am totally confused and go with the lower stage because it makes me feel better! Good news is that wherever that node was the latest ct showed it to be normal size now! I don't think the surgery changes the stage, although I have heard of some being down staged after neo adjuvent chemo. So confusing, because if you can get down staged from neo chemo working it would make since you could get down staged after succesful surgery!

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2011

    Technically, I am one node into Stage IIIa (more than three),  but my charts say IIB.  I would actually have been a IIA had I not had that fourth lymph node.  But technically, I am a IIIa and I believe you are as well. I would be much happier being the stage one I was before surgery. Had I had chemo first and it wiped out all the cancer in the mystery nodes (meaning one node lit up on a pet scan that appeared beninn in a CAT scan and no nodes in ultrasound and one node with thickening tested negative at initial biopsy) and breast, I would have always been a stage I when in fact I was always a stage IIIa.  Interesting.....and irritating at the same time. How I long to be a true stage I but it is what it is.  I will just be fine regardless and so will you!

  • lwarstler
    lwarstler Member Posts: 341
    edited September 2011
    Thanks ladies...I know it doesn't change what it is or how treatments will turn out, it was just scary to go from a I to a IIIa. I was looking at recurrence rates and it was a big difference from IIb to IIIa so I guess I was just hoping it would be IIb, but everything I read (including BCO's site) does say that the enlarged internal node makes it IIIa, so oh well. Thanks for everyone's answer and you're right Kathleen, I am going to be fine! Smile
  • Outfield
    Outfield Member Posts: 1,109
    edited September 2011

    I think a lot of us have had what stage we're diagnosed at change during the process of evaluation and initial treatment.  There was a similar thread not too long ago.  

    I just felt awful when I found out I was stage III and not stage II.  I had to keep telling myself that my prognosis has nothing to do with that label.  What's going on in my body - my cancer - is the same whether someone calls it stage III or makes up a new name for it altogether.  What's going to happen to me as an individual doesn't change based on those words.  Of course this wouldn't be true if there were a difference in the treatment I was offered, but there wasn't.  

    And I would be doing all the same things to try to prevent recurrence.  And personally, I never look at recurrence rates.  I figure anything between 5% and 95%, I'd be doing the same thing, trying hard as heck to reduce my risk, living my life as best I can without those assumptions I never even realized were there until this smacked me in the face.   

    I hope this is helpful.  I'm having a hard time putting it into words.  

  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    I always get confused by this and others have asked how are you a IIIc with only 5+ LN.  But that is what my initial report said I also had internal mammary LN that were + but my report read T3, N3b and had me at IIIc and I've never been staged down due to neoadj. or my BMX.  I understand, who wouldn't want to be a lower stage....as long as tx works though.

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited September 2011

    Kathleen you brought up a very interesting point.  I didn't have tx until after my surgery, so who would have known what stage I might have been had I done tx first (which ironicaly my GS who TOTALLY freaked me out suggested)!  SOOOO confusing!!

    Sharon

  • lwarstler
    lwarstler Member Posts: 341
    edited September 2011

    It is so hard to sort through which are the right and wrong decisions on tx. My first onc wanted neoadjuvent, then surgeon convinced him to do surgery first with short turn around (7-10 days) and chemo. Second said 10 days is nuts so 2 1/2 weeks was his compromise. I think you just have to go forward and recognize that many treatments are apporpriate and just preferred by some doctors over others for various reasons.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited September 2011

    i'm with you ladies.  I was initially diagnosed as IIb, but after the MRI, I think I got re-staged to IIIa, but nobody told me.  (The tumor was waaaay bigger on the MRI.)  A doctor let it slip in March and I freaked out.  Held myself for about seven minutes, but she kept saying, "well, because you are Stage III..."  until I started to cry.  She felt SO bad.  She thought that I knew.  I try to ignore the recurrence rates.  They are based on women who went through treatment ten years ago, when protocols were different.  Plus, that doesn't take into account any lifestyle, diet, complementary treatments, or compliance with all treatment.  I'm determined to be one of the Stage III ladies who is giving people hope in thirty years.  But hopefully, we will have a cure by then!

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2011

    The difference between stage IIB and IIIA is far less significant, for prognostic purposes, than, say, a Her2-positive tumor that does not respond to Herceptin and a Her2 neg. one, or a Grade 3 tumor that scores 9 out of 9 on the Bloom-Richardson scale versus a grade 1 tumor that scores a 1. Cancer staging is significant at extreme ends (Stage 0 versis Stage IV, obviously are a tale of two different planets) but at the stage II/III level spread is being recognized as less and less the leading factor. 

    I'm old fashioned, though, and I am thankful that, regardless of my known, visible cancer's characteristics, the cancer that was detected was found to be operable. Regardless of the more scientific prognostic factors, it did make me feel better to know that I could go under the knife and wake up and be told that no cancer that could be seen through an MRI or any other exam existed.

    Yet on a rational level, I wouldn't worry about the change from IIB to IIIA all by itself. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Lee Ann,

     This website is pretty good at explaining staging breast cancer.  Hope this helps.

    Click here: How is breast cancer staged?

    image

    Barb

  • lwarstler
    lwarstler Member Posts: 341
    edited September 2011
  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    So that seems to confirm what my mo says and not what the doc reading the ct says, as my positive lymph node is "near the breast" With this info I could be stage 3A if my axilla nodes are negative, which they appear to be but we know that can change once I have surgery and get path results back. Oh the things I obscess about. But this infor does make it seem as if I am not stage 4!Why didn't I just listen to my mo? Oh, and my mo actually does look at all of the scans, in fact, he seems to be obsessive about that! Another thanks to Barb, it makes me feel better, even if it really doesn't change the outcome.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2011

    It's the whole picture.  My docs refer to it as "presentation".

    In my case I have some bad stuff and some good stuff.  Initially I had redness on the skin but after neoadjuvant chemo, the surgical biopsy showed that the skin was clear.  We thought it was only 3 or 4 axilla nodes but it turned out to be 14 of 17.   It was 9 out of 9 on the Boom-Richardson scale but the Ki showed that the proliferation was moderate.  Since I'm ER/PR positive hormonal therapy is promising.  The tumors added up to more than 6 cm but that is not unusual in lobular cancer.  The BRCA2 and pleomorphic lobular are negatives.  But no vascular invasion. 

    Staging is helpful for the docs to figure out treatment.  But it does not determine our future. 

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