time for 2nd mastectomy!

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glennie19
glennie19 Member Posts: 6,398
edited October 2017 in Lymphedema

Well, I'm having a 2nd mastectomy next month for prophylactic reasons. I'm using a different surgeon this time so hoping for better info on LE prevention! However, I know there are different viewpoints out there. How high to lift the arm after surgery for example. Do I spider crawl up the wall,, as far as possible or only shoulder high?

Would greatly appreciate people chiming in with advice to help me prevent issues this time. I currently have truncal on the Left side, and hoping it would spread to the right side. But since it is prophy,, no nodes are being removed.


thanks!! glennie

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2017

    OH, yeah, and the surgeon says I can't wear my usual breast binder for 6 weeks after surgery, cuz the tightness could affect healing of the scar! EEEK!! that is my go-to item to keep it under control.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2017

    Glennie, don't know if you know and use self-MLD, but if so you'll want to consult with a good LE therapist about how that routine will change now. You'll need to learn to redirect fluid from your left side downward, not across to the right axilla. If you haven't been doing self-MLD recently, now's the time to brush up on it, since it will be your best method of keeping things stable when you can't use the binder.

    Yeah, keep your arm movements below shoulder level for the first 10 days or so. That gives the delicate, insulted lymphatics their best chance to heal. Elevation of your arm when you're lying down and staying really well hydrated are important too, along with some deep abdominal breathing throughout the day.

    Make sure both arms are protected during surgery and following. A couple of bright pink LE armbands or those Lymphedivas alert sleeves might be in order!

    Free from the ReidSleeve people:

    http://www.lymphedema.com/alertband.htm

    $40 each from Lymphedivas:

    https://lymphedivas.com/hospital-sleeve/

    (And of course, you'll need a supply of chocolate to have on hand for recovery!)

    Please keep us posted and let us know how you're doing!

    Gentle hugs,
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2017

    Glennie. I'm in your back pocket. Let us know how it goes so we can help. Binney covered it well.

    I had phrohy on left with no nodes ot and it went fine. I still keep a eye on that arm but admit it's my workhorse arm.

    One thing that happened to me was I said no to arm needles. Well the nurses have long shifts and get tired. When I was still drugged I saw my original overtired overworked nurse come at me with a needle. I had sense to get out of my stupor and tell her no. She said oh yah. I'll put a big sign above your bed reminding all. That worked!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2017

    glennie - good luck!

    TLC also has this LE warning sleeve for wear in the hospital. I was surprised when I had surgery in one of the BayCare hospitals here in Tampa, they had the red version in pre-op and put one on me. They also posted the sign above my bed.

    http://www.tlcdirect.org/Lymphedema-Alert-Sleeve.html?did=42

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2017

    Thanks for all the advice!! I do have that pink bracelet that I've worn for my last 2 surgeries and I dug that out of the closet. I like the sleeve idea too, Special K.


    And Binney, I will have plenty of chocolate!!


    thanks, glennie

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2017

    Glennie, you need TWO bracelets now.

    (And double the chocolate!)
    Be well,
    Binney

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2017

    Binney, since it is a prophy,, and they are not taking any nodes,,, do I need the same precautions on that arm as I do with the affected arm?


    double the chocolate for sure!!


    thanks, glennie

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2017

    Glennie, that's up to you, of course. My second mastectomy was also a prophy, no nodes purposely removed, and my LE actually started on the second side. Since you've already proven you're not entirely immune to LE you might want to treat both sides as at risk. You'll get some argument on that, but it's your arm, and as you know only too well, LE is forever.

    Gentle hugs,
    Binney

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2017

    OH, UGH, Binney, that yours started on the prophy side. That stinks. That will make IV's and blood draws, and BP's lots of fun. NOT.

    Thanks for the advice!!


    Pass the chocolate!


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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited October 2017

    You may also want to discuss it when you are admitted. Some (most?) hospitals have their own system of warning bracelets. So while your bracelets are good, you'll want to make sure you get their version (which might not be pink!) so that when you're not able to speak for yourself, your bracelets will do it for you.

    Best wishes w/ your surgery,

    LisaAlissa

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