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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Thanks for the clarification. However, as everything in BC thankfully there is no one size fits all, hence the statement "Until that number is discovered using the TailorX trial, as of now, if a patient has a Recurrence Score below 18, the risk of chemo outweighs the benefits." is not an absolute. It again depends on a lot of factors with regard to the patient and the experience of the MO.


    I read through this thread and I do aloo wonder if there are stats of Stage 1 to mets. Does anyone know of any source?

  • lago
    lago Member Posts: 11,653
    edited December 2013
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    SchoolCounselor I'm sure age and being African American is a huge decider for you. As I'm sure you know (but maybe not others here) although breast cancer isn't as common amongst Black women (although rising) the survival rate in this group that does get it isn't as good as Caucasian. Some of it of course has to do with lack of care, finding it too late (due to lack of care), more aggressive and age but not all. They are still studying this.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited December 2013
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    In 1982 I was given an 85 percent chance that my cancer would not recur (within 5 years only) that is all I was told.


    So far, 31 years later that cancer had not returned after a mastectomy with recon. and no further treatment other than yearly bloodwork.


    However in 2010 I got a new cancer in the other breasts. It was not a recurrence.


    Anything is possible.

  • jojo68
    jojo68 Member Posts: 336
    edited December 2013
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    @dogs...did you have chemo with your first dx?

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    For me it was 10 months from stage 0 to late stage recurrence. I trusted the positive side of those statistics once. No More.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited December 2013
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    No chemo - had a mastectomy with recon. No hormonals at that time so just had annual bloodwork.

  • jojo68
    jojo68 Member Posts: 336
    edited December 2013
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    Dogs...that is awesome that you never had recurrence after all of those years!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2013
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    HVV, were you Stage 0 after your surgery was all done or was that just from an initial biopsy?

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Thanks Lago for clarifying that. That was also part of the discussion with my oncologist... as a side note I am part of the Black Womens Health Study that started in 1995 and includes 59, 000 women. It's a pretty comprehensive study looking at all aspects of our health including breast cancer...hopefully it can provide more answers.

  • lago
    lago Member Posts: 11,653
    edited December 2013
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    SchoolCounselor That's awesome that you are giving back by being part of the study.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited December 2013
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    Jojo: Yes, I am lucky so far.I hope the new, 2010, cancer doesn't recur either.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2013
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    school...I totally agree that the Oncotype DX score is not absolute. Recall though, I mentioned it is just one tool that helps in the decision process....I also think that having a trusting relationship with your MO is paramount in the decision making process. Looking back when I was choosing my protocol, I hadn't realized then what I now know and that is that my MO gave me incredible, relevant advice and information. His knowledge was rock solid.

  • Rdrunner
    Rdrunner Member Posts: 67
    edited December 2013
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    HVv like Bessie i am curious to hear your story if you feel comfortable sharing it. I did have the oncotype test but didnt factor it in for my decision as I would have been excluded from the taylor x study and all the retrospective studies done to evaluate its effectivness. Pathologists are concerned that oncs are putting too much weight on this test is the general feeling.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    Bessie & RdRunner: I was told that I was a stage 1b/1c by the end of surgery for the first go around - I was told that I was 1 cell over the limit required to be labeled as a micro-met in 1 node of those removed. (They count the cells and if you have n o more than 500 then cancer is not present if you have 501 (me) then it is a micro-met and if you have several hundred more then its just a plain positive node.) Then elective not required chemo (TCx4) wish it had been ACT which is stronger. Then the horribleness that is radiation for those with large breasts (more likely to burn and I did). Then several months during which I physically recovered and slowly began to trust that I would be okay. It took me 7 months to have nearly my normal amount of strength and state of mind and half way through month 10 I went for a regular check up with my onc and radiation onc and they found the lump - large. Then a pet / ct scan and other scans that determined that it was in both axilla and in the supra-clavicular nodes and possibly in the pecs all of which puts me in the category of a stage that some doctors call stage 4 and some doctors call stage 3. Either way, I am changed and am left to sort out my new life.


    (yes I said yes to all the hormonal drugs, to vitamins, to supplements, to losing weight, etc. MY wish for all of you is that you do every single thing you can to prevent a recurrence. Every time I hear about folks using the cold caps or icing their fingers I think is hair worth the chance of a recurrence and say a prayer.


    V

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    HVV, thank you for sharing your story....wow...I agree with you about the cold caps and the icing and so does my MO. So I have black nail beds and no hair and a wing and a prayer.....

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2013
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    HVV, thanks for the additional information. It sounds like you've been through the wringer!


    To my understanding, the definition of a micromet is nodal involvement that is >0.2 mm and/or >200 cells but none >2.0 mm. Micromets to the nodes leaves the staging at Stage I, but moves it from IA to IB. Anything more than micromets to the nodes moves the staging to Stage IIA. Stage Information for Breast Cancer


    What confuses me therefore is that if you had one cell over the limit of a micromet, then wouldn't your initial staging have been Stage IIA, not Stage IB? (There is no IC.)


    If your staging after surgery included nodal involvement, did your surgery also find some invasive cancer in addition to the DCIS that was uncovered by the biopsy? With invasive cancer and nodal involvement, it would mean that it was only your clinical staging (an initial preliminary estimate of the stage based on a biopsy and imaging) that was Stage 0 but your actual pathological staging (the final staging based on all the biopsy and surgical pathologies and any other tests) was Stage IB (or maybe Stage IIA).


    About 20% of women who have biopsies that initially find only DCIS turn out to have some invasive cancer that is found during their surgery, so the actual diagnosis is never Stage 0 but instead is Stage I (or higher). Most of the 20% (about 15%) just have microinvasions, as I did (my official stage is Stage IA), but about 5% do end up with more serious diagnoses, including nodal involvement.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    school counselor, you're welcome and by the way I'm in riverdale near you.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    hi beesie,


    Post surgery path result in fact said not just dcis but Idc and 201 cells so micro mets (not beyond that). My docs said since it was literally 201 cells (thanks for reminder 200 not 500) that they considered it a 1c (yes both they and I know that staging goes from 1b to 2a). They considered chemo advisable but optional; I chose the most aggressive treatment offered even asked about bmx rather than lumpectomy and the bs said it seemed excessive to him. I'm at Ivy League internationally recognized leading medical center by the way. So much for predictions.

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    So, my stage is actually 1a so that means that there were micromets? You learn so much on these boards, I had no idea. Thank you! Help me also reinforce my decision to do chemo.

  • Annette47
    Annette47 Member Posts: 108
    edited December 2013
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    SchoolCounselor - you can be stage 1A without micromets. Even the tiniest amount of invasive cancer bumps you up from stage 0 (pure DCIS or LCIS) to stage 1A, but there is no requirement for positive nodes (micro or otherwise).

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2013
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    Staging is based on the TNM system where T= tumor, N= nodes and M= metastasis. So it's the combination of those three elements that determines the stage, not the tumor size alone, or the nodal status alone.


    SchoolCounselor, Stage IA means no micromets. The presence of micromets in the nodes automatically moves someone to stage IB - or higher, depending on the tumor size. Stage IA means no nodal involvement (except for ITC - isolated tumor cells, which is considered node negative). But as Annette said, any amount of invasive cancer within the breast tumor - even just 1mm - moves someone from Stage 0 to Stage IA.


    HVV, I wonder if the "1c" was referring to the tumor size rather than the stage?


    Referring back to the link in my previous post, within the TNM staging system, tumors are designated as being either T0, Tis, T1mi, T1a, T1b, T1c, T2 , T3, T4a, T4b, T4c or T4d. The number and letter of the tumor size is often different from the number and letter of the stage.


    For example, someone with a small 0.7cm tumor has a T1b tumor. If they have no nodal involvement, they will be Stage IA. Just one positive node (more than micromets), will change the stage to Stage IIA (micromets would be Stage IB). And if they have a large number of positive nodes, they will be Stage IIIA.


    On the other hand, someone with a larger T3 tumor, let's say 5.5cm in size, who has negative nodes will be Stage IIB.


    In my case, my T is "T1mi" and my stage is Stage IA. So could it be that your T is "T1c" and with the micromets, your stage is Stage IB?


    There is no Stage IC. In fact there used to only be Stage I, with no A or B. Stage IB was added into the mix about 2 or 3 years ago, after there was enough definitive research to conclude that those who have smaller tumors (T1mi through to T1c) and micromets to the nodes have a prognosis that is closer to those with similar tumors who are node negative (i.e. Stage I) than those with similar sized tumors who are node positive (i.e. Stage II). Until Stage IB was created, anyone with anything more than ITC (i.e. less than 200 cells in the nodes, or an area of involvement <0.2mm in size) would automatically be moved to Stage IIA.

  • lago
    lago Member Posts: 11,653
    edited December 2013
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    "On the other hand, someone with a larger T3 tumor, let's say 5.5cm in size, who has negative nodes will be Stage IIB."


    That would be me. My BS pretty much thought that with the size of my tumor (5.5cIDC + 1cm DCIS) and that it was so fast growing (HER2+) that I would be a IIIA with micromets. So there are big invasive tumors out there that are node negative.

  • PatinMN
    PatinMN Member Posts: 784
    edited December 2013
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    HVV - there is a lot of misinformation out there regarding cold caps. Cold caps have been used in Europe for 10-15 years, and there have been many European studies done. Unfortunately there hasn't been as much research done in the U.S., although there are trials going on right now at two hospitals - one on the east coast and one in California, I believe. The concern regarding cold caps has been for scalp mets. Scalp mets are exceedingly rare anyway, but European studies have shown that the incidence of scalp mets is no greater for cold cap users than for non-cold cap users. A woman - a professional medical researcher - who used cold caps within the past couple years did extensive research for a presentation to physicians in her area, and provided her bibliography to anyone interested - it was several pages long, and the results were conclusive that there is no danger in using cold caps. There is an active and extensive discussion board here on BCO regarding cold caps, in the "Help Me Get Through Treatment" section, and I recommend that anyone interested in using them take a look there for help and information.

  • bdavis
    bdavis Member Posts: 3,192
    edited December 2013
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    I am actually stage IIa with a 1.9cm tumor and 1 micromet. I suppose some might say I am Ib... but my MO says IIa.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited December 2013
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    Hi,


    The 1c doesn't refer to the size and my own IDC was a fraction of a cm - about .25 cm. The mo and bs meant 1c as a stage because they believed that given the biology, size, etc. of my cancer it was just barely beyond the 1b stage. As for TNM status, I'd caution folks to take a close look at this and consult with their doctors. Beyond the fact that clinical assessment determines final fit into the categories that make up this staging tool, this staging is can vary in different countries.


    V

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2013
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    Staging is international and is always supposed to be consistent, so that any doctor anywhere in the world can understand a patient's diagnosis based on the TNM description and the Stage. Staging is put out and updated by the UICC, which is an international/global body (Union for International Cancer Control) and the AJCC, which is an American organization (American Joint Committee on Cancer). The UICC and AJCC TNM staging classifications were made consistent back in the '80s and are supposed to always be the same, although I don't know if there may be a small lag time between changes being announced in one TNM system and also being implemented in the other. Regardless, the whole point about staging is that there are very clear and very strict rules (there are very detailed staging manuals explaining all the rules and the "ifs, ands or buts" of staging), and it's not subjective (or at least it's not supposed to be). But sometimes doctors do go out on their own - I've seen that happen before - which I guess is what your doctors have decided to do in your case, V.


    There is a difference between clinical staging, which is usually considered preliminary and is based on imaging and biopsies, and pathological staging, which is the final staging based on the pathology of the tumor and the nodes. Pathological staging is considered more accurate.


    Betsy, you were diagnosed right around the time when Stage IB was announced. Although the change was supposed to be retroactive to January 1st 2010, I'm sure that anyone who was staged before this announcement was made probably remains Stage IIA rather than Stage IB. Certainly anyone with your diagnosis prior to January 1st 2010 would always be considered Stage IIA.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited December 2013
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    I was told I had stage 1; no mention of any letters. But my lumpectomy was in early 2011 so maybe that made a difference.

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited December 2013
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    Thanks Bessie for that informative answer!

  • Fallleaves
    Fallleaves Member Posts: 134
    edited December 2013
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    Yeah, my paperwork just says stage 1, no a or b.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited December 2013
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    I do wonder Fall, why my surgeon only took one node. Not that I'm complaining (after having 17 nodes taken in 1982) but it seems most of you have had more than one taken. Is is just a case of an over-abundance of caution or did more than one "light" up?