Lymph nodes- worry or trust doctor?

MamaM
MamaM Member Posts: 80
edited October 2015 in ILC (Invasive Lobular Carcinoma)

I would really love to have opinions from others to help me know what to do. I had a dmx a year ago with multi-c ilc on left side and at that time I had a lymph node that I could feel under my arm. The doctor removed 4 nodes (2 sentinel- all neg) but didn't remove the one I could feel that is in lower armpit area. Margins were clear. Oncotype 6. I just had my exchange surgery & yearly appt too. Doctor had sent me for an ultrasound 2xs already to check the lymph node within the past year. It is showing as a matted group of lymph nodes that are all skinny normal nodes. They say they don't know why they are matted but everything looks normal but I am worried. I tend to be a worrier so I don't know what to do. Please let me know what you would do as she said no u/s this time since we checked twice already.....am I just being paranoid

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  • Momine
    Momine Member Posts: 7,859
    edited October 2015

    I would ask for a fine needle biopsy. It takes 2 minutes, and would save you a lot of worry.

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  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited October 2015

    Hi, MamaM..

    Question, when you say you can feel it. How are you feeling it?

    I don't mean to ask a stupid question, but I am having an issue with 2 enlarged lymph nodes deep in my lower left arm pit which is the side I had cancer on.

    I can *not* feel them with my fingers, but it has been aching me since about March. My oncologist and breast surgeon had been blowing me off because when I had my double mastectomy a sentinel node biopsy was done and no cancer was found. Both dr.'s said it was most likely scare tissue, or I was still healing.

    Fast forward a few months, still feeling this ache, I went back to my oncologist in August. To put my mind at ease I did get an ultrasound. 2 enlarged lymph nodes were found where this aching has been for months and months.

    So, I am having a fine needle biopsy Friday afternoon.

    The reason for telling you all of this is that you know your body and what is and is not normal.

    Please let us know how it goes.

    I wish you the best.

    Lynda

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  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited October 2015

    Hi, again.

    I was just thinking, I wonder if there is a different test they can use to find out what is going on there.

    After having a cancer diagnosis we can't afford to ignore these things.

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  • MamaM
    MamaM Member Posts: 80
    edited October 2015

    I can move it around and feel it with my fingers. Had 4 different u/s techs feel it and look at it using u/s. All said that they are skinny normal nodes and there is nothing there yet they don't know why the nodes are together. They even showed me each node with the lights down through them (not sure of what it's actually called) and that they were clear. They are not enlarged at all. I have had 3 lymphs (years ago) removed on my other side because of similar findings and they were benign. Obviously I'm worried after having cancer that they might miss something.

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  • MamaM
    MamaM Member Posts: 80
    edited October 2015

    I feel so frustrated right now & feel like this should be a time I can relax a little after this past year- I had a dmx then ovaries removed, two different meds and SE's to deal with then the exchange surgery from the explanders just 2 weeks ago. The waiting on those 3 pathology reports almost drove me insane. Both times after the u/s I felt less worried that they were ok but now I think I have more time to focus on them?

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  • 614
    614 Member Posts: 851
    edited October 2015

    Dear MamaM:

    Send your pathology report and images to another radiologist for a second opinion.  That may ease your fears. 

    I have learned to listen to my "gut instincts". 

    You have to advocate for yourself and you must do all that you can to put your mind at ease which is not always easy. 

    Good luck and I hope that the area is benign.

    Invasive lobular carcinoma is really scary.

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