What does 'Extranodal extension present' mean?

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Jaynina
Jaynina Member Posts: 11
edited February 2017 in Diagnosed and Waiting for Test Results

First of all, I have to say sorry if my English is not good or clear enough because English is not my mother tongue.

I am just diagnosed with stage IIb breast cancer. I just had a mastectomy and the report shown like this:

- Invasive ductal carcinoma, Grade 2

- Tumor size: 3 cm.

- Extensive intraductal carcinoma (EIC): 40%

- ER+80%, PgR+90%, Ki67+80% p53+60% HER2/neu Score 3+

- Lymph node involvement: 2 out of 23 nodes (the largest is 1 cm.)

- Extranodal extension present


The doctor told me to do a bone scan, CT scan and Muga in the next two weeks. But now i am so worried about the phrase 'Extranodal extension present'. I search the meaning in dictionary and not clear about it. Please kindly help me to clarity my questions as follows:

1. Does 'extranodal extension present' mean that I have a high risk that the cancer might have spreaded to other organs already? For example, bone, liver etc. If it's like that, I might have to be in Stage 4, right?


2. I have to go with herceptin, as the doctor said. If i take it, what is normal or average 5 or 10 years survival rate for me?


Thank you for all your kindness here.

Nina


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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Dear Nina, sorry you have to be here, but wanted to say welcome!

    We have an article in our main site about Lymph Node Involvement that may help you clarify some of those questions. Hope this helps!

    We're thinking of you. Please come back and let us know about your test results.

    Best wishes,

    The Mods

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  • Jaynina
    Jaynina Member Posts: 11
    edited January 2017

    Dear The Mods,


    Thank you so much for your quick information. I have read that but still have a question.


    In the article, it is stated that "Extracapsular extension: Cancer has spread outside the wall of the node". Is it possible to say that the cancer has spread to other organs in the body like bone, liver etc. (stage 4)?


    Is there anyone here who have this phrase in the report? I am still new about having breast cancer and not really strong enough to fight with it. I have a 10-year-old daughter and wish I could stay with as long as I can. I will go for the bone and CT scan in the next two weeks but I'm too worried to wait for the results then.


    Thank you in advance and I am very glad that I found a good place to share my thoughts and feelings about this hard time here!

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  • lekker
    lekker Member Posts: 594
    edited January 2017

    Extranodal just means that the cancer broke outside of the lymph node. This alone does not mean that it is in your organs or bones, but it's a good idea for them to scan you to be certain. I'm sure there are survival statistics out there for similar cases to yours but you have to remember that you are an individual, not a statistic. And many statistics out there were calculated before herceptin which is a very effective treatment. Perjeta is often also used here in the US for HER2+ disease. Is that available for you too?

    Please keep coming back for support and to let us know how your scans go.

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  • fd1
    fd1 Member Posts: 239
    edited January 2017

    Hi Jaynina - as Lekker said, it just means that the cancer was starting to grow out of the node. I had a very similar diagnosis - 2.1 cm, 2 nodes positive, largest 5mm with extranodal extension, er+ 100%, pr+ 90% and HER2-, grade 3. I just passed my five year mark since diagnosis, breast cancer free!

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  • Jaynina
    Jaynina Member Posts: 11
    edited February 2017

    Dear Lekker,

    Thanks so much for your information. I'm not sure that Perjeta is used here in my country or not (Thailand). I just known that my doctor will treat me with Herceptin.

    I'm glad to have a good place here to exchange information and will come back to update the scan results soon.

    Nina



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  • Jaynina
    Jaynina Member Posts: 11
    edited February 2017

    Dear fd1,

    Congratulations for your great result! It made me feel a lot better to fight for it!


    Thanks so much!

    Nina

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  • lekker
    lekker Member Posts: 594
    edited February 2017

    Jaynina - I have been to Thailand several times and I absolutely love your country! Fabulous food and lovely people. My husband had to spend some time in a hospital in Phuket and received great care - I hope you do too! There's a board for HER2+ if you have more questions (I was negative).

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  • Jaynina
    Jaynina Member Posts: 11
    edited February 2017

    Lekker, thanks so much for your note. I'll look for the HER2+ board you suggested here.

    Love to know that you and your husband love my country. Thanks for that too!


    Nina

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited February 2017

    I had extranodal extension on two of my positive nodes. The docs didn't seem impressed. It didn't change anything in the treatment plan - I had to have chemo and radiation anyway because of the positive nodes. This was four years ago and I'm doing fine, still cancer free.




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  • Jaynina
    Jaynina Member Posts: 11
    edited February 2017

    Dear Jennie93,

    Thanks so much for sharing your inspiring information! :)

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