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Topic: SNB on each side--risks of lymphedema?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Sep 17, 2006 09:45PM

Erica wrote:

Three years ago I had an SNB on my right side, along with lumpectomy and radiation. So far, I've had no lymphedema problems. I've been careful to always have blood pressure, blood draws, and injections on the other side. Now, I've been diagnosed with widespread DCIS on my left side and will undergo SNB on that side, along with bilateral mastectomies. The surgery is scheduled for October 3rd. Both my surgeon and my PCP assure me that I don't need to worry about lymphedema with SNB, that the risk is so low. But of course, I do worry!

Wondering what you experts on this board would suggest regarding future precautions to avoid lymphedema.

Although I've not had a problem yet, I'm very familiar with lymphedema. My mother-in-law, now 80, had a mastectomy at 31, with radiation, after which she developed severe lymphedema. By the time the new massage and compression techniques were introduced in this country, it was too late for her. Her arm and hand is always very swollen and her shoulder has dropped. She's never let this get in the way of having an extremely active and adventurous life, but it definitely has been a handicap.

Barbara
BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Sep 18, 2006 01:55AM sccruiser wrote:

Hi Barbara,
I had the same procedures 2 and a 1/2 years ago. I was also told not to worry, the risks were very low! I even asked about flying, and was told not to worry. After two airline flights w/out a sleeve--I developed LE in my breast and arm. I was told LE in the breast was VERY rare, and I couldn't possibly have that, and that rad wasn't how I could develop LE.
To make a long story short--the pain was so great that I had a mast w/ TRAMflap recon (and now have LE in my abdomen & back).
So, my advice to you, is to get a referral ASAP to a LANA certified LE therapist, have measurments taken and follow all the precautions for LE patients, particularly the wearing of a sleeve on your arm.
Good luck to you. Be your own advocate!!
Most of the women on this board with LE know more than the doctors!
grace
One must still have chaos in oneself to give birth to a dancing star
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Sep 18, 2006 03:43AM Binney4 wrote:

Hi, Barbara,
Good for you for being aware and taking charge of this. I'll second what bygrace says, do see a qualified LE therapist (they aren't all qualified, as there are no national training standards -- yet!) Here's a website for locating one: www.mylymphedema.com Besides doing base measurements and talking with you about prevention, have her teach you LE massage, as there's new research evidence that massage can be used even before surgery as a prevention technique (and anyhow, it's nice!)

Very recent research indicates that, while the SNB lowers the risk somewhat, it is not as low as everyone had hoped. Riitta Ronka's new study in Scandinavia (in the journal "Lymphology" from the International Lymphology Society) indicates that 12% of women (not 1% as is so often quoted) will develop breast/chest LE following SNB and rads.

Unfortunately, since all the risk factors for LE haven't been identified (and some may be genetic or have to do with the way an individual's lymph system is formed, or might be affected by previous damage to the lymph system), it's impossible to state the risk for any one person. So prevention is our best defense.

The National Lymphedema Network ( www.lymphnet.org ) has position papers on prevention and on flying which should help. What most of us are finding difficult is getting healthcare personnel to cooperate with us in our prevention efforts by doing blood tests and IVs in our feet and blood pressures on our legs. At various times I've been told it was silly, unnecessary, inconvenient, dangerous, and/or impossible. None of which is true, so don't be bullied.

Brava to your MIL -- I'm so sorry for her suffering, but her spirit and joy inspires us all!

Be well,
Binney

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