What is extranodal spread?

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Jubby
Jubby Member Posts: 85
edited June 2014 in Stage I Breast Cancer

Hi All,

I am hoping someone can tell me what extranodal spread is?  I had a mastectomy (right side only with a temporary tissue expander before reconstrcution after chemo) on 14 Dec and nodes removed.

My right breast was a mess and I thank my lucky stars that I opted for the mastectomy rather than lumpectomy as in addition to an invasive tumour (17mm), I also had adjacent DCIS (40mm) which wasn’t picked up on MRI.  

They found 2 sentinel nodes (1 positive with the site of largest focus being 8mm and extranodal spread of 3mm, and the other clear).  15 axillary nodes were identified and clear.

My question is what is extranodal spread?  As I have had my head spinning, I didn’t think to ask the surgeon at the time and my follow up with him is not until the new year.

I was devastated to learn that it had gone to the sentinel node as all ultrasounds looked clear before surgery.  Add the DCIS and the extranodal spread to the mix and quite frankly I am pooing my pants and thinking the worst.

I have been told I am T1, N1, M0.

My tumour is ER 3+ (90%), PR 3+, HER2 -

Has anyone else had extranodal spread who can explain what this means?  I am wondering if it worsens my prognosis? 

It has not been 4 weeks since my diagnosis so my head is spinning and I am trying to keep a check on my negative thoughts until I meet the oncologist on 9 Jan. Chemo will be a definite. 

I would love to hear any long term success stories from node positive women. 

I have 2 small kids (14 months & 4.5) and am holding it together over Christmas but frankly feeling terrified and worried this could be my last with them even though logically this is unlikely. Any extra explanation about the extranodal spread would be helpful and some success stories would also be received well Smile

Many thanks,

Jubby

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited December 2012

    Jubby I am not absolutely sure but I think extranodal spread means the tumor has grown out of the node itself. MO means theres no distant metastasis which is good. The lower the number on T and N the better. Yours are T1 and N1 so thats good. Your tumors were small also. I know theres nothing good about cancer but in our world there are some things better than others. What stage are you? Also what type do you have? Most have ductal or lobular. I have lobular. Someone who has extranodal spread will most likley come along soon. I just wanted to let you know theres hope for us all. I've had breast cancer for 10 yrs, 6 of those with mets. Hope this helps calm you a little. Have you tried out the chat room? It was a Godsend to me. Hugs, Mazy

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  • Jubby
    Jubby Member Posts: 85
    edited December 2012

    Hi Mazy,

    I have stage 2, grade 2 invasive cancer which spread from a duct. Will have to work out how to get that to tag to tell people what type at the bottom of my posts! Found it myself after weaning my daughter. I used to call it my dud breast feeding boob as it never worked as well as the other (now I know why!)  Scarily the surgeon thinks it could have been in me for a year!  

    Thanks so much for the speedy reply.  Will wait for someone to chime in re extranodal spread.  I have had CT scans, bone scans and MRI on other breast. All clear at this stage. Only one not done was brain CT.  Surgeon says brain mets usually come after others.  Of course every pain I have now, I am convinced is cancer! I figure I will be a worry wart for a while but am trying meditation and other relaxation techniques to help. Will also try the forum – thanks for the tips.

    So glad you are hanging in there.

    Hugs back.

    J x

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  • Jubby
    Jubby Member Posts: 85
    edited December 2012

    Hi All,



    I have not had a lot of response to my question re extranodal spread. I am wondering if it actually means I am stage 3 instead of stage 2?



    My surgeon said that staging is not his favoured measuring tool (he prefers TNM) but in thinking about the extranodal spread, I wonder if this makes me stage 3.



    Would appreciate any feedback (so I can worry myself even more senseless until the appointment with my Onc on the 9th Jan!).



    Many thanks!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited December 2012

    Jubby...try to back away from all the staging stuff.  It's meaningful to research, and to determine courses of treatment, but YOU are an individual, not a statistic.  Some oncs don't even share staging information with their patients, because it just makes them focus and agonize on numbers.  Your doctor is treating a woman, not a number.  

    Anyway, extranodal extension is a description of a lymph node that has been invaded with cancer and instead of being contained cleanly within the node, it has extended into the surrounding tissue.  It doesn't affect staging within the TNM system. 

    The fact that you're ER/PR positive means you'll have anti-hormonal therapy as a weapon against the cancer, and it's a strong one.  Also, just one node out of the 17 removed is great news.  That node prevented the cancer from reaching the rest of the crowd.

    I know it's hard now...the whole deal is scary.  I promise you, it will get easier.  Little by little, breast cancer will occupy fewer of your thoughts.  Blessings and blue skies...

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  • Jubby
    Jubby Member Posts: 85
    edited December 2012

    sbelizabeth, you make perfect sense and are the breath of fresh air I need :)

    Thanks for the wise words of wisdom.

    xxx

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  • satisfaction1
    satisfaction1 Member Posts: 14
    edited January 2013

    Hi Jubby I just decided to do a search on extranodal spread as well. I start chemo tomorrow as I had surgery (lumpectomy) on Nov. 19. I have been told I should have mastectomy now, after chemo. Right breast like yours, was a mess, DCIS did not show up on MRI had 6cm. and had extradnodal spread on one sentinel lymph node after surgery.)an an 3cm invasive tumor as well) I have done a bunch of searches on extranodal spread and I agree with sbelizabeth,  you can't get too fixated on it, there are many other factors that play into the prognosis and each new little 'twist' sets charges your fears again! At least so with me. I find comfort in how many of "us" are here and moving forward despite the differing numbers, grades and biologies. I will watch your posts. (do yourself a big favour don't review your path. report the night before a procedure like I just did!)

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  • Jubby
    Jubby Member Posts: 85
    edited January 2013

    Hi Satisfaction,



    I start chemo on the 24th so won't be far behind you :)



    It's freaky that DCIS doesn't show up on MRI. I chose mastectomy over lumpectomy purely due to a family history of BC and am glad I did. It also meant I could keep my skin and own nipple due to the placement of the tumour. I have decided to have my other breast off and reconstructed once chemo is over when I have the right reconstructed. I have a very strong family history of BC and am waiting on gene testing results. My aunt had it return in her other breast. I think I will feel better once the other has been removed.



    Interestingly I spoke to my breast surgeon yesterday and he said that extranodal spread is quite common which surprised me. He assured me they got clear margins on the node and that the risk of recurrence is only marginally increased with extranodal spread and not to get too preoccupied with it. He didn't even factor it in to my long term prognosis. I met with my oncologist today who explained that spread increases you chances of recurrence slightly but was very keen to assure me that the fact that I am ER+ is a good thing and that I am still an early BC patient with under 3 nodes affected. I feel much more optimistic about the future now.



    It's a crappy old road on this cancer journey isn't it? I am trying to avoid Dr Google too much after initially going overboard on it. You're right - every new piece of news adds a curve ball to the mix and prompts some more self internet diagnosis and fear. Living with the fear of this disease will be a lifelong thing methinks.



    Good luck with your chemo and the mastectomy. I will be thinking of you and will look for your post too.



    J

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  • kyliet
    kyliet Member Posts: 687
    edited January 2013

    Hi Jubby, I am Australian also. Please drop in to the Australian Sisters forum, they are a great group and support within Australia.

    I am one year out, with 3 out of 26 positive nodes and extranodal spread. It is hard not to worry because it means it hasn't been contained by the nodes, but I must hope that the complete auxillary clearance got any extranod. cancer and that chemo cleared it up after.  It doesn't mean you are stage 111 and it is great news that it was only in one node. Hugs x

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  • Lagatta
    Lagatta Member Posts: 1
    edited July 2013

    I too have extranodal spread.  2/7 nodes are positive with one have extranodal spread.  I have a stage 3, 8cm tumour, Grade III, ER/PR negative, HER2 Positive!!!  They also found a 3cm DCIS SITU tumour!  All this and mammogram didn't pick up anything!  I think that the stage, grade and number of positive nodes are more important predictors than the estranodal spread.

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