The very best thing you can do to help prevent lymphedema is to make sure you get full range of motion back in your arm, whether after surgery or radiation.
Q. I definitely want to avoid lymphedema. Is there anything I can do to ward it off, or is lymphedema totally random?
A. The very best thing you can do to help prevent lymphedema is to make sure you get full range of motion back in your arm, whether after surgery or radiation. Favoring the arm on your affected side, hunching your shoulder protectively, being too stiff to stretch your arm up over your head and around towards your back-these are all things that will make it easier for lymphedema to gain a foothold.
I have a friend who's a physical therapist specializing in lymphedema treatment. In fact, we became close as she gave me daily massages to relieve my own swollen arm. (Just as getting a tummy tuck is the silver lining of a tram flap reconstruction, a daily massage is the big plus of having lymphedema!)
This friend says that women who've had surgery, particularly a mastectomy with lymph node removal (even if just a single node) need physical therapy. It shouldn't be one of those "Well, it might be nice" kind of treatments; it's critical in preventing lymphedema and a host of other issues, including a painful condition known as frozen shoulder. So step #1, if you feel your treatment makes you a lymphedema candidate, is to schedule physical therapy as soon as possible after your surgery. Ask for someone who specializes in breast surgery patients; that person will no doubt understand lymphedema, and will gear your therapy towards its prevention.
Q. I've heard all kinds of other advice, like don't lift anything, don't get your blood pressure or bloodwork done in the arm on your affected side... even don't garden without gloves! Is this all true?
A. Lymphedema has been a "forgotten" side effect of breast cancer, not getting nearly the attention that, say, hair loss or the fatigue of radiation has gotten. Therefore, as it gradually gets more attention, some of the classic advice about its prevention is being questioned. For instance, studies on women with double mastectomies show that having blood pressure taken, or blood drawn doesn't seem to increase the risk of lymphedema, even though for years we've been told to use our non-affected arm for these procedures. So, what's the story? The jury's still out. In which case, why not play it safe? It's easy enough to hold out the "right" arm when the nurse gets out the blood pressure cuff.
The other main things to watch for are working your arm to fatigue; and getting an infection. You need to get your arm back in shape, which doesn't mean never using it! Yes, carry groceries, drive your car, exercise, use your arm the way you've normally used it, the way you use your other arm. BUT: don't work it to exhaustion. Don't lift the very heaviest grocery bag with your affected arm, or bowl three strings 3 months after surgery. Don't kayak 5 miles upstream if you've never been in a kayak before! (Which is what I did, and which I'm sure caused my lymphedema). Be sensible; use it, exercise, but don't strain it.
The other thing you MUST do is prevent infection in your affected arm. Which means avoiding the following:
• Cuts, no matter how minor;
• Scratches (watch out for animals);
• Bug bites, as much as you can avoid them without simply staying indoors all the time;
• Burns, including sunburn;
Anything that breaks or injures the skin puts you at risk. Sure, you can still garden; but wear gloves. Use an electric razor, if you're prone to "nicks." Keep your hands soft, to avoid cracked skin or torn cuticles. See where we're going here? Protect your skin at all costs; because if you don't, the cost may be weeks of lymphedema treatment.