Anybody had pathological report EXTRANODAL EXTENSION PRESENT?

Options
shining20031228community2
shining20031228community2 Member Posts: 12
edited June 2014 in Stage III Breast Cancer

I got pathological report today. it showend axillae EXTRANODAL EXTENSION PRESENT. 3 of 18 nodes are positive.but one of them had Macrometastasis up to 2.5mm.

EXTRANODAL EXTENSION PRESENT mean bad prognosis?

Anybody had EXTRANODAL EXTENSION PRESENT? How is the prognosis?

· Share on FacebookShare on Twitter

Comments

  • sugarplum
    sugarplum Member Posts: 318
    edited June 2013

    I had 10 positive nodes with extranodal extension and skin involvement...and here I am, 7 years later! I just keep on taking my Arimidex and doing my workouts...

    Julie

    · Share on FacebookShare on Twitter
  • satisfaction1
    satisfaction1 Member Posts: 14
    edited June 2013

    Thank you sugarplum!  I just got a newpathology report back today(after 2nd surgery..have to update my profile) .... I have 11 positive nodes with extranodal extension, so your post was just what the doctor ordered! Any other hints besides the workout? also toronto canada...I am also in toronto i will keep a look at your posts we are both probably headed for radiation

    · Share on FacebookShare on Twitter
  • sugarplum
    sugarplum Member Posts: 318
    edited June 2013

    wow - a couple of Ontario girls! I had to check your biographies to make sure you weren't the same person! As far as other hints...my daily pills are:  Arimidex, a mushroom supplement capsule (Host Defense), a 2000 IU Vitamin D capsule, 2 Caltrate chews, and a Centrum Silver multivitamin. I choke down 2 17-ounce bottles of water a day (which I have to flavor with sugar-free almond syrup - hate drinking!). Most nights I eat Lean Cuisines for dinner, but I do have a weakness for Ben & Jerry's - as a result, I walk 1/2 hour per day and work out with light weights 4 times a week, so I can have my sugar fix!

    I realize it's all just a crap shoot - but at least I've bought myself an extra 7 years of disease-free life (so far!)

    Julie 

    · Share on FacebookShare on Twitter
  • shining20031228community2
    shining20031228community2 Member Posts: 12
    edited June 2013

    Thank you,Sugarplum and Satisfaction for the posts.

    Now I feel less worried . I try to eat and excercise well, do more and think less. Sugarplum is successful model for me. Life is good. I have to work really hard to save myself.

    I had finished chemo.  The next step is radiation according to the original plan. I am not sure yet any change after pathological report came out. I will see doctors next week.

    We are not alone on the road fighting the cancer. Good luck for everybody!

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    You may want to check out the main breastcancer.org site for Your Guide to Your Pathology Report. It has a lot of helpful informtation which can help explain many of the terms in your pathology report. 

    We hope this helps!

    · Share on FacebookShare on Twitter
  • shining20031228community2
    shining20031228community2 Member Posts: 12
    edited June 2013

    Hi Moderator,

    Thanks for the helpful  information! I will check out the website.

    · Share on FacebookShare on Twitter
  • beth1965
    beth1965 Member Posts: 455
    edited June 2013

    Hi shining i had 17 positive nodes and 2 with tumors in my nodes EXTRANODAL EXTENSION.  The doctors have been giving me all they have got as far as strong treatments -that was their recommendation.

    Good luck to you  

    · Share on FacebookShare on Twitter
  • sciencegal
    sciencegal Member Posts: 1,120
    edited June 2013

    Hi shining, I had that in my path report as well. We have treated it with chemo and surgery and at the time of mastectomy I was a NED! Zero of 24 nodes had cancer and only one dead nest in the tissue that got removed, after a nine cm tumor.



    Hoping, hoping, I stay a NED - hoping for you as well.



    Thank you sugarplum for the positive post- love it.



    I will start radiation tomorrow, the last arm of the treatment. Going in with as positive an attitude as I can muster!



    :)

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    I had that. Also "vascular involvement." One and a half years after diagnosis I am NED. But I am getting extra treatment to hopefully stay NED for the long term.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited June 2013

    Yes, oh yes...I had extranodal extension. They did not notate whether it was on some or all of the 10 positive nodes. This was AFTER chemo. No one will give me a prognosis. I am still here and going strong. In August, it will be 2 years post diagnosis.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited June 2013

    I wanted to add that I read the brochure on reading your path report mentioned above by the Moderators, and it is generally very good. I am confused though by it not mentioning number of positive lymph nodes as part of staging. Does anyone know why? Also, I'd like to know if the extracapsular extension is the same thing as nodes clumping together.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited June 2013

    Yep, I had one of those. I am only 2 years out, but doing OK so far. 

    Statistically speaking, the more advanced the cancer the worse the prognosis, roughly. But it is what it is, and we are individuals, not statistics.

    Chin up, do your treatment, look for the sunshine whenever you can and take care of yourself, body and soul. I try not to go too crazy, but I do exercise, lots of studies suggest this can be helpful and it certainly makes you feel better and makes your overall health better. I also try to eat lots of veggies and try to eat more fish than meat, go easy on cheese and high-fat dairy etc.

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    Mary, extracapsular extension is not the same as matted nodes or clumping nodes. Extracapsular extension is just when the lymph node is breaking open and the cancer growing into the surrounding tissue.

    · Share on FacebookShare on Twitter
  • katyand4
    katyand4 Member Posts: 171
    edited June 2013

    Okay so what is extranodal extension and is that supposed to worse the "ECE"?   

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    Katie, it's the same thing. (I think.)

    · Share on FacebookShare on Twitter
  • satisfaction1
    satisfaction1 Member Posts: 14
    edited June 2013

    thanks sugarplum for the outline regime, it sounds really liveable...some good ideas! Actually have to see my surgeon tomorrow..curious as to his take on the prognosis with extranodal extension

    · Share on FacebookShare on Twitter
  • YATCOMW
    YATCOMW Member Posts: 664
    edited June 2013

    Yep... i had it along with at least 17 nodes positive.......

    I am nine years out as of last month.....

    Jacqueline

    · Share on FacebookShare on Twitter
  • caaclark
    caaclark Member Posts: 936
    edited June 2013

    I also had extranodal (mine said extracapsular) extension.  It scared me too.  I am 7 1/2 years out.

    · Share on FacebookShare on Twitter
  • lkc
    lkc Member Posts: 1,203
    edited June 2013

    me too, I am out 8 + years.

    · Share on FacebookShare on Twitter
  • shining20031228community2
    shining20031228community2 Member Posts: 12
    edited July 2013

    Hi Beth,

    Thanks for the reply. It has been a while i did not check this website. sorry for the late reply.



    I went to the dr appointment. Same as you i ,the dr did the best whatever they can. Hope we will do our best and have good luck.



    Shining

    · Share on FacebookShare on Twitter
  • SheilaB330
    SheilaB330 Member Posts: 73
    edited July 2013

    Hi Sheila here.



    Out of 11 nodes 5 had cancer. Some had the notation extranodal extension present.

    1 axillary palpable node positive metastatic carcinoma, 3 mm, extranododal not identified.

    Right level 2 lymph nodes, 2 positive metastatic carcinoma, largest 25 mm, extranodal extension present.

    Right axillary content 2 out 8 lymph nodes positive metastatic carcinoma, largest 7 mm, extranodal extension present.



    So looks like 4 had the extranodal extension. Asked oncologist and she said meant that the cancer was outside node. We don't know how long the cancer was there in the nodes. All this despite-- thank God-- clean margins on the invasive ductile breast cancer which was 1.8 cm. I believe have to send my breast and underarm area compassion and lovingkindness to heal so that when AC chemo starts on July 18 the chemo can be successful in destroying cancer cells.



    This is frightening but when I meditate, I feel calmer and peaceful and protected by all the love of friends and family and skillful treatment by first my surgeon and now my oncologist.



    May we all be well-healed,

    Sheila

    · Share on FacebookShare on Twitter

Categories