Leg Swelling

Sandylyn, there's a genetic component to LE, and unless your mother had some kind of surgery or trauma to her leg or groin area, it's likely her LE was primary, i.e. a compromised lymphatic system from birth. It's not unusual for primary LE to remain silent for decades. Also, recent research suggests that LE is a systematic disease, and even those of us with secondary LE (i.e. after surgery or trauma that damages the lymphatic system in one area of the body) have some disfunction elsewhere, and I think some women in our forum here have experienced leg swelling after BC treatment, although it's not very common.

Have you discovered this wonderful website? http://www.lymphedemapeople.com/articles.htm

You'll find lots of accurate information about LE, and some of the articles on the site might give some focus to the discussion with your internist.

So sorry you're dealing with this. I know nothing about AI side effects, but with luck, that's the explanation and there will be some strategies to deal with it, and it's temporary. But to evaluate (and hopefully rule out!) the possibility of primary or secondary LE, I hope your MD will listen and refer you to a qualified LE therapist for evaluation. 

Carol

I just came to this forum to learn about leg swelling, mine seems to be more swollen since I have been diagnosed with LE in my arm. I shake my head in disbelief to even consider this is possible but the measurements don't lie.

Since discovering this leg swelling (which my doctor denies)...I have met 2 other women who have had breast lymph nodes removed and ended up with leg LE

Anyone else? Do we need to take leg precautions?

Crystal, I developed LE in my right leg this last year. There's some evidence from research in the UK that those of us who develop LE after surgery probably do so because we don't have a very robust lymph system to begin with. And that once we have LE in one limb, the entire system does worse at lymph transport. So maybe it makes some sense, but it sure is discouraging. Make sure it's not from some other cause (like a blood clot), and then get help from your LE therapist. I did a full course (four weeks) with the therapist (except we didn't wrap it because I caught it really early, so just the compression stocking worked fine between MLD sessions). I wear a knee-high stocking on my right leg during the day, and a Solaris leg garment at night, and I learned the leg self-MLD. It all works well, but I have to be careful not to push fluid up above my waist.

LE--blah!

Gentle hugs,
Binney

Crystal, in terms of LE leg precautions, the National Lymphedma Network recommends the following:

"Avoid prolonged standing, sitting or crossing legs to reduce stagnation of fluid in the dependent extremity." (Interpretation: Alternate standing and sitting throughout the day, and don't cross your legs when you're sitting or your leg may swell.)

"Wear proper, well-fitting footwear and hosiery." (Interpretation: Make sure your shoes and socks or stockings fit you well. "Proper" sounds more like Emily Post, so maybe they mean not to wear white shoes after Labor Day--who knows?! Why can't these people just speak English?!)

"Support the at-risk limb with a compression garment for strenuous activity except in patients with open wounds or with poor circulation in the at-risk limb." (Interpetation: This refers to risk-reduction rather than treatment of actual LE, but the "strenuous activity" could certainly be extended to include travel as well. Just like with our arms, those are the things to be especially careful of.)

And I'd add, same as arms:

Be careful about cuts, scratches, insect bites and burns--wash promptly and use topical antibiotic, and do extra self-mld as necessary.

Exercise is helpful--work up GRADUALLY to any new leg exercises, even walking, running, jogging.

Lotion well to keep skin on leg and foot moist and free of cracks.

Keep your toenails trimmed (it'll save on compression stockings too!) and use the same precautions for pedicures that we do for manicures.

Don't run around barefoot. (Be especially careful at the beach.)

Check your feet nightly for any chafing or dry skin.

Hope some of that helps. We all go to such lengths to take good care of ourselves, we should earn some sort of reward--I suggest chocolate.

Be well!
Binney

Oh, and just to add to Carol's suggestion, I do elevate my leg on a pillow at night. But I use a night compression vest and sleeves. If you elevate your leg, use compression on whatever is affected by LE above the waist, because you don't want to encourage lymph to travel northward during the night.

Aaaugh!! How did our lives get so complicated?!!
Hugs all,Binney

Thank you, Binney.  I always worry about passing along information that's second hand to me.  It's so hard to be accurate when almost by definition, knowledge of LE is tailored to our own experiences.  I'm so very grateful that you are here to share your own considerable knowledge, and I hope you will never, ever hesitate to post a correction if I get something wrong, or leave out something important.