Lymphedema and Mastectomy

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alycallie
alycallie Member Posts: 32
edited September 2014 in Lymphedema

Hello! Does anyone know how likely it is to develop lymphedema if one only has a mastectomy without node removal... I have lymphedema in my left breast cancer side but am trying to decide if I should have a prophylactic mastectomy when I have reconstruction surgery or just a reduction and lift....

TIA

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited September 2014

    I think it's considered unlikely, but it happens (and did to me). I had no nodes removed on the left, and developed LE on that side first.(Three nodes removed on right, and didn't develop LE until several months later.)

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  • Bren58
    Bren58 Member Posts: 1,048
    edited September 2014

    aly, there is no predictor for who will get LE and who will not. I had a BMX with SNB in 2000, never heard of LE, did everything wrong and did not get LE. There are ladies who have had a MX with SNB, done everything right and got LE. Unfortunately I don't think there is way to tell ahead of time who will and who will not get LE. That being said, I believe the risk of LE is greatly reduced with a prophylactic MX. Hopefully there will be other ladies that will come along with more info for you.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Shah and Vicini (2011) did a review of studies to try to make sense of the many LE risk studies, which unfortunately are apples and oranges on some key research methods, such as diagnostic criteria and measurement technique, as well as patient follow-up periods.  I just checked their journal article hoping they'd found risk ranges from the studies on mx alone, but nope.  That tells me that it's just not been well studied, even though we do lose a node or more with MX, from the 'tail of spence' if I recall correctly. Shah & Vicini's review of studies revealed that MX with rads to the axilla brings 58-65% LE incidence; mx with SNB but no rads brings 3-23% incidence, according to quite a few studies they reviewed.  You can see from the enormous risk ranges that the research isn't helping us to figure this out much....

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Good to consider possible long term effects when making a decision such as this. What is your risk of contralateral occurrence? I could not see the point of removing healthy tissue but have been followed by MRI (partly because one of my tumors was lobular).

    Depending on the type of reconstruction, you will still need to monitor the areas, probably via self & periodic clinical exams. Mammography is an option with the reduction/lift - you could always choose mastectomy later should that be required. 

    I tend to think a less invasive procedure leads to fewer potential complications in general, including lymphedema. Since you already know what that is like, perhaps a more conservative approach is warranted.

    If DIEP is the current plan, you won't have any "extra" abdominal fat to hold in reserve so would have to do both sides at the same time.

    Be at peace with whatever happens & try not to second guess after. No one has a crystal ball showing the future! 

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  • alycallie
    alycallie Member Posts: 32
    edited September 2014

    Thank you for all of your responses!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2014

    Unless there is a genetic reason to do a  prophylactic mastectomy, or it what your doctor recommends, then I'd be very cautious about having one. You already know that you are prone to lymphedema, and any kind of trauma (surgery, car accidents, sports injuries) can trigger it (which I didn't know before BC).

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