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  • cosbon
    cosbon Member Posts: 12
    edited October 2010

    I am going to try this again....I tried to post earlier, but it was on our IPad, and somehow couldn't get it to work!!   Well, I am 10 days post bilateral mastectomy.  I feel pretty good, and am getting stronger every day.  Yes the first 48 hours was tough, very tough, but it already seems like a distant memory.   I got my final pathology report today.  Originally I was diagnosed with DCIS grade 2, small 1 cm lesion, on the right side.  I felt foolish choosing a BMX for that, but then again, my family history was significant, I've spent most of my life worrying about  breast cancer, and I felt I needed for my own peace of mind to be proactive.  Today it was determined that the non-cancer side also had DCIS.  It was in one duct, very small, but it was more aggressive, grade 3.   I'm sure it would have been years before it showed up on a mammogram, but I now it's gone and I don't have to worry about it.   The right side, the doctor removed (I think he said) 5 "little nodes" all negative.  On the left side, there was 1 node imbedded in the breast tissue, also negative.   But true to form, now I am worrying about lymphadema, something I never even considered until reading a little on the posts.  Do I have a big risk to that with 5 little nodes being removed?   Such a risk was never mentioned to me by my breast surgeon, so I don't know much about it at all. 

  • JAT
    JAT Member Posts: 81
    edited October 2010

    I had the same number of nodes removed-- 5 sentinel nodes and 1 intramammary node with the breast tissue. The BS and oncologist all downplay the risk of lymphedema but if you read the LE board there are women who've gotten LE with even one node removed. Focus on recovering your strength, not worrying about LE, but learn to be proactive. See a physical therapist who specializes in LE treatment and get measured for an arm sleeve and glove-- so when you fly you are protected.  Some women wear this when they garden or shovel snow or exercise their arms-- which is a good idea-- heavy lifting and repetitive motions are also triggers.  If the dr. hadn't taken the nodes I'd always worry that something was missed-- but now I also worry about LE-- it's a no-win situation!

    BTW, the therapist also helps you recover range of motion and massages the area to prevent scar tissue-- I saw one about 3 weeks post surgery-- it felt wonderful! --Julie

  • cosbon
    cosbon Member Posts: 12
    edited October 2010

    Julie, thank you for your response.   I will definitely talk to my PS about seeing a PT and also ask about the risk of LE.    Ithink it is very good advice.  I wonder if I would have any idea about the sleeve for flying and exercise had it not be for this board?     Thanks!!  Carolyn

  • roseg
    roseg Member Posts: 3,133
    edited October 2010

    Any breast surgery makes raises your risk of lymphedema, but I'm not sure if someone with no sympthoms really needs to have sleeves fitted.

    I would consult the lymphedema board topic here before jumping into that commitment.

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