Predisposition to Lymphedema?

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SydSyd
SydSyd Member Posts: 37
edited June 2014 in Lymphedema

Hi - I have been reading on here that there may be some predisposition to lymphedema. My sister has DCIS in lump form and has a lumpectomy scheduled for Friday. The surgeon wants to do an SNB but at the moment, we have asked her to go against her protocol and not do an SNB.

Does anyone know whether being sinewy and having veins that already stick out has any bearing on lymphedema?

Also - this surgeob believes if she does not have an SNB now, the scarring from the lumpectomy will make it more difficult later. Has anyone heard this before?

 Thanks, SydSyd

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  • lago
    lago Member Posts: 17,186
    edited March 2011

    I have never heard being sinewy or having veins stick out pre-dispose you to LE. The only thing I have heard is being heavy can put you at additional risk.

    I did get mild LE in my arm on the side I had 10 nodes out about 2.5 months after surgery/1.5 month after I started chemo. The other side I had a sentinel (4 nodes total) and do not have LE on this side. I am thin and have very obvious veins.

    They really don't know who will or won't get it. The fewer nodes removed the lower the risk.

    Here is a site that discusses risk reduction if she should get the nodes out: 
    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

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  • SydSyd
    SydSyd Member Posts: 37
    edited March 2011

    Thanks to all...this helps. My sister is thin and in great shape and a good l athlete. That is why I really want to understand the full implications of lymphedema!

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    SydSyd - I can't help with information on the lumpectomy. I have never heard of that, but also, I did not have a lumpectomy so it is not something I have researched fully.

    My LE therapist used to have a full questionaire that she would have patients fill out - she found that there were MULTIPLE similarities for those of us that developed LE. Being thin is not one of them, but there were other things such as how badly one swelled during pregnancy, how badly one swells with hot weather and activity... and multiple other things. I can ask her for a more in depth list of what kinds of predisposing factors she found in common for those of us that have developed lymphedema. Definitely staying at a healthy weight and staying active are in your sister's favor! Those are good things! 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    SydSyd, hello!

    All surgery to the breast/chest presents some risk for lymphedema -- even a breast augmentation or reduction without breast cancer. Football players are at risk for lymphedema because of repeated trauma to their chest. And automobile accidents where you smack into the steering wheel or dashboard are a risk. 

    There are some factors that increase the risk: number of nodes removed, overweight, and post-surgery complications like seroma, infection or Axillary Web Syndrome. Dr. AW Stanton in the UK has recently published a couple of studies that indicate that those of us who do develop lymphedema have lymph systems that are already working to capacity before our cancer treatment, so the surgery or rads tripped us over the limit of what our system could handle. Those who have the same treatment and don't develop lymphedema start out with lymph systems that are operating at only a percentage of their capacity, so even after treatment there's enough capacity to compensate.

    Since none of us knows beforehand which category we fall into, there's no way of predicting any one individual's personal risk level. I was slim and small going into treatment, had one node removed on my cancer side and none purposely removed on the prophylactic side, and I have bilateral arm and truncal lymphedema. On paper, my risk was low, but the reality is very different. No matter what the statistics may say, if you develop lymphedema your risk was 100%.

    Goes both ways, of course -- some women at high statistical risk don't develop lymphedema no matter what they do: trapeze performance, bucking bales, sumo wrestling.Undecided

    Best bet is to see a well-trained lymphedema therapist even before surgery for baseline arm measurements, then learn about and consider risk reduction strategies to build into your lifestyle going forward.

    All best wishes to your sister (and to you!) as you begin this journey. Knowledge is power!
    Binney

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