Extracapsular Extension

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gfrey
gfrey Member Posts: 43
edited June 2014 in Stage III Breast Cancer
Extracapsular Extension
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  • gfrey
    gfrey Member Posts: 43
    edited November 2009

    Hello Ladies, I got a second opinion on the pathology report from my surgery. The lab that did the report only has 1 MD sign off on the findings. I wasn't comfortable with this and had the report sent to the same lab that did my core biopsy (it's run by a friend of mine). The lab run by my friend has 2 MDs sign off on the findings AND I The good news was that I had 3/17 rather than 4/12 positive nodes. The bad news was that all 3, rather than 1 in the 1st report, had extracapsular extension. I know that means the cancer was leaving the lymph nodes. This worries me b/c I had neoadjuvent chemo. It makes me wonder why I went through all of that before surgery if it didn't seem to stop the cancer from migrating. Can anyone comment on extracapsular extension and prognosis? Thanks....

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  • lkc
    lkc Member Posts: 1,203
    edited November 2009

    Yep.  I had both sentinel and axillary nodes/extra capsular  extension/ 12 out of 14 nodes ; 4 .5 yrs ago.it bumps us up to more aggressive tx. I am fine and you will be too.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2009

    Hi, gfrey ~ That was smart of you to get a 2nd opinion on your pathology.  I also had extracapsular extension, and it was one of the reasons I had rads even with a mastectomy.  As Linda said, it bumps us into more aggressive tx, just to be sure.  It's also interesting that you're Grade 2, yet the bc sounds like it was behaving pretty aggressively.  This was pointed out to me during a second opinion consult -- that my Grade 2 (per biopsy path) was behaving more like Grade 3, and it turned out to be Grade 3 upon final pathology.   Deanna

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  • lexislove
    lexislove Member Posts: 2,645
    edited November 2009

    It means that it is more agressive. Higher possibility that cancer cells might have travelled. Remember, I said might. but that is what the chemo is for. It is not uncommon for ER+ woman to still have + nodes after neoadjuvant chemo. cPR (complete response) only happens in about 20% of woman, and the majority are ER-.

    I see your hormone sensitive. That is a bonus, anti hormone meds are just as important than chemo.

    Chin up, Im sure your onc has perscribed rads. You still have a lot more arsenal behind you!

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited November 2009

    Gfrey,

    I have a friend who had that in five nodes, and that was 3.5 years ago.  She is doing fine.  Throw the kitchen sink at it and keep moving forward!

    Hugs

     Bobbie

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  • Pure
    Pure Member Posts: 1,796
    edited November 2009

    I have a friend who had 6 nodes all with extrcapular and she is 10 years out!!!

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  • gfrey
    gfrey Member Posts: 43
    edited November 2009

    I appreciate the positive messages about extracapsular extension. I seem to be focusing on every negative aspect of my dx, rather than the positive aspects. My situation would indicate a more aggressive tumor. Interestingly, the tumor was Grade 1 based on the biopsy and Grade II after the mx. My architectural score went from 2/3 to 3/3 and the nuclear score 1/3 to 2/3. The mitotic score stayed 1/1, which means the cells aren't dividing rapidly and I'm happy w/that. So, my score jumped from 4/9 to 6/9 and that was consistent from both pathology opinions.

    It was interesting to learn that only 20% of women have a complete response to neoadjuvent chemo and it's mostly ER- women. It makes me wonder why they don't start us premenopausal hormone + women on tamoxifen right away!

    I'm beginning to think getting my ovaries removed would be good. Has anyone else gone this route? They won't be used for anything!

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  • rainbowmaker13
    rainbowmaker13 Member Posts: 3
    edited January 2010

    I didn't know about this until the other day I read a copy of an onco visit with my MD. I guess I was under the impression that the cancer stayed in the node, and no one corrected me. Mostly, I'm mad that all this is happening. Not at anyone in particular. I have an appt. 2/11/10 with same doctor, I'm going to ask him directly to explain what this means.

    Dx'd 6/16/09, IDC in right, s/p lumpectomy 6/30/09 w/one of 14 nodes +. Chemo done 11/12/09, just finished 14th rad of 33. Grade 3, triple -.

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited January 2010

    I had my ovaries removed primarily as a means of shutting off the hormones, secondarily due to family history of ovarian cancer (though I'm not BRCA+). I don't know how old you are; if you're younger than 40, please talk to your onc about the pros and cons. I was 49 when I had it done last year.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2010

    I had my ovaries out....I was 50 at the time....onc did not think my periods would return due to my age and being perimenopausal before Dx but he still felt it was a good thing to have them out....to this day, I am happy I did the ooph...but being thrown into menopause is not easy....I say that I got the "blue plate special" ...bilat, chemo, rads, ooph and AI's.  My 4 years since Dx is coming on Feb 3rd. 

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2010

    I too had several hospitals look at my slides.......what a nightmare....each time someone looked at it my prognosis got worse.....first 11 nodes postive....then no 17 nodes positive......and then oh,....extracapsular extension......oh and then negative margins.....I just hated to have anyone else look at this because I had enough bad news.....

    But I am coming up on six years this year with the extracapsular......know they will base your treatment on it so they can kick the cancer to the curb.

    Jacqueline 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Wow, Jacqueline, your 6 years is coming up fast! Fantastic.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2010

    Well I still have four more months to go.....hope i didn't jinx myself :):)

    Jacqueline 

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited January 2010

    Well I still have four more months to go.....hope i didn't jinx myself :):)

    Jacqueline 

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  • renee2010
    renee2010 Member Posts: 93
    edited August 2010

    Found this today..very helpful had this on my report also

    Thankall of you for posting:)

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2010

    bump....I also had ECE.    But I read in Oncolink that they have not proven that women with ECE have lower survival rate than women who don't.   So while it sounds ominous, apprarently it's not as grim as it sounds....

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  • kerrie389
    kerrie389 Member Posts: 66
    edited October 2010

    WOW! I had this this on my path report and it has been freaking me out completely.

    Feel so much better after reading these posts. Thanks ladies.

    Kerrie 

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  • caaclark
    caaclark Member Posts: 936
    edited October 2010

    I also had extracapsular extension.  It completely freaked me out at first too-probably for the first couple years.  I am almost 5 years out now and so far so good. 

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2010

    Caaclark, that is wonderful to read!!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2010

    I had ECE as well and I remember honing in on that so much in the beginning of my diagnosis.  It isn't fun to hear, but they do "throw the kitchen sink" at the aggressive cancers.  I am one year out and so far so good...........knock on wood.

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited November 2010

    Good, Jenn, I am glad :-)    Yeah, I guess if it were that ominous it would be a consideration in staging, and it's not.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited November 2010

    Hell yeah to all the other ladies,

     I hadn't heard the term "extra capulalar extentsion" until my radiology appt.  I have to say it threw me through a loop, but I am ONE YEAR OUT now and am looking forward, and SO CAN YOU!

    Love,

    Sharon

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited November 2010

    Yeah, mine said "perinodal invasion", but onc says it's the same thing (which is not the same thing as vascular invasion).

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  • jejw
    jejw Member Posts: 14
    edited November 2010

    I had a stage III lobular carcinoma. My maectomy pathology report reported micromets in three lymph nodes; also macromets in 2 (largest .5 cm). My breast tumor was 1.5 cm on removal of the breast (it started out at 4.8 cm before chemo). I had done neoadjuvent chemo.  My oncologist also said that complete pathologic response is uncommon for estrogen positive cancer. Now I move onto radiation. I wanted to start Tamoxifen right away, but on oncologist said that having radiation while on Tamoxifen increses your chances of tissue contracture/fibrosis.  Has anyone heard of this?

    jejw 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2010

    I started Tamoxifen rthe same day I started Rads. No problems at all.

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  • krcll
    krcll Member Posts: 343
    edited November 2010

    I had Femara and Tykerb during rads. No problems either.

     I also had extracapsular extension. I was pretty freaked out until I learned I had macro-invasion in 9 lymph nodes- that freaked me out more.... I have also heard that chemo works less well on ER+ cancer. But then we get to take our Tamoxifen or AI's, which is very effective. It all helps and it is all part of getting the kitchen sink thrown at us, as stage III women. 

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited November 2010

    I didn't know that chemo was less effective on ER+?   Eh, glad I'm on the AI's! 

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  • caaclark
    caaclark Member Posts: 936
    edited November 2010

    I started Tamoxifen when I began rads.  My docs gave me the choice and said it did not matter either way. 

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited November 2010
    Is it odd that I had perinodal invasion but no vascular invasion?  
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  • TectonicShift
    TectonicShift Member Posts: 752
    edited March 2013

    Fearless One:  I had the same thing.

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