advice on what to do for future . I dont want Lymphedema......

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tangles
tangles Member Posts: 508
edited June 2014 in Lymphedema

So I was diagnosed with Breast cancer Late November. Small tumor in breast, lots of pre Cancer areas and lymph gland that was swollen under my arm tested positive. Decided on a  dbmastectomy and taking out that infected lymph gland. To my surprise when I went in for the pathology results the surgeon said, bad news. We missed the lymph gland that has Cancer. I was like WHAT??? How could you? He said he was trying to be Conservative with the tumor being so so small he didn't think that any lymph glands but that one was involved and he said he scooped a good amount of skin and thought for sure he would have gotten it.  Well its still there. I am now halfway through Chemo and have a decision to make. Do I trust Chemo wil shrink and kill off the Cancer in that gland and leave things be in hopes it does not reappear years down the road( I am also having radiation) Or do I go in and clean out the lymph glands when I am out out for my TE exchange and try and get it out. Its not like he will be able to just see it and take it. He will have to take several. He said if he doenst go above the axillary line I wont get lymphedema, but I am very worried. What to do????

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    Did you have a sentinel node biopsy with dye injection, or did your surgeon just think he could find the affected node without the tracer?  Did you have a FNA on the node so that you know for sure that it is cancerous?  If it is a micromet you may be safe with chemo and rads, but it depends on your ability to live with the risk of not knowing.  I am also assuming that you had an invasive component and not pure DCIS, although your diagnosis information does not reflect that.  Your surgeon has no way of knowing how many lymph nodes taken equals a future problem with lymphedema, a blanket statement regarding that indicates he does not understand lymphedema very well.  There are people on this site who just had a SNB with one node and ended up with lymphedema. 

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2013

    I know people who had no lymph nodes removed, but have Lymphedema from a Lumpectomy.  You have to live with this decision.  SpecialK made very valid points.

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  • tangles
    tangles Member Posts: 508
    edited March 2013

    No dye injected he just thought he would get it when he scooped out the amount he did. I had a biopsy of the infected gland a month before surgery and it did test positive for cancer which shocked the doctors as the tumor was so so tiny they couldn't believe it would have even carried anything up under the armpit. I'm new to all this cancer stuff so very confused. Not sure what Micromet or FNA means? I did get a second opinion from a cancer surgeon. He is not a general surgeon he is a cancer surgeon and head of the cancer dept. He said we should go in and clean out everything below that auxiliary line?? ( I hope I am right as I think this is what he said) he said if he stays below that line the chances of having that swelling are minimal. Gosh I am so confused I don't want a swollen arm for life, but I am not sure I could live with knowing it is still in there. My Oncologist says with the chemo and rads it will be killed off anyway. so cancer surgeon says take it out and oncologist says why bother it will be gone anyway!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    The new methodology is to only take one node....the others are treated through chemo and rads..so I would lean towards not wanting the additional dissection

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    tangles - FNA is fine needle aspiration, I am guessing that is what you had done when they sampled the node.  Micromet is short for micrometastasis, which is a small area of cancer in the node that is 2mm or less.  What concerns me is that he did not do a SNB, which is standard of care these days, and that he is making broad statements regarding who will have lymphedema.  Unfortunately because he did not do the SNB at the time of mastectomy you are out of options on that front since it cannot be done afterward.  You are faced with either taking more nodes and risking lymphedema but knowing the cancer is out, or not taking more nodes and hoping that chemo and rads does the job but not being sure.  Unenviable to say the least - I sure do wish you the best and hope you can find peace with either decision.

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    He said if he doenst go above the axillary line I wont get lymphedema,

    WTH?
    Your dr. does NOT understand LE!  ( which is NOT uncommon)
    I had 2 nodes out, SNB, simple LX, not obeses, no rads at all....LE here.

    You should visit the LE thread and the SUSO website .( google : lymphedema stepupspeakout)  sorry I dont have the link right now.

    This is a decision only you can make , but at least know all of the things to do to avoid LE.  ALL of us who have had BC surgery  are at risk- every single person who has had a  SNB with 1 node out.

    Pls learn the facts  right there through our LE thread before you decide  and

    Good Luck and best wishes to you !

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  • tangles
    tangles Member Posts: 508
    edited March 2013

    I should correct myself. He didnt promise I would NOT get LE he just said the chances are low if he stays below that line.

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