Lymphedema: Evolving Research Lifts Restrictions

Patient Expert

Watch out for insect bites and sunburn.

Don't have blood drawn or blood pressure taken on the affected side.

Wear loose-fitting jewelry.

Don't carry heavy bags of groceries.

Which of the guidelines above was considered a risk reduction factor for lymphedema 10 years ago? Which is still regularly recommended today?

Well, the times, they might be a-changin'.

Lymphedema, a buildup of fluid in the arm after the removal of one or more lymph nodes (or sometimes as a result of radiation), has long been one of the most feared side effects of breast cancer treatment. Years ago, a woman with lymphedema would almost certainly develop a hugely swelled arm, an arm so bloated with fluid that it was sometimes difficult to wear regular clothes, or to carry out everyday activities..

Nowadays, the frequency of such unchecked swelling has diminished. We've learned that gentle massage to encourage drainage is a help, as is pressure on the arm to physically prevent swelling. But left untreated, lymphedema can still put you in the hospital with cellulitis, a serious (indeed, life threatening) skin infection. And lymphedema is   considered incurable; once you have it, its symptoms may come and go, but it's always there lurking, waiting to reappear.

Up to 20% of us who've been treated with radiation or chemo for breast cancer will get lymphedema. The risk increases to 40%, if you've had one or more lymph nodes removed. Clearly, it's a major potential side effect of cancer treatment. But surprisingly, considering the number of women who suffer from lymphedema, there's no known cure, and no effective protocol for prevention. In other words, there's not a thing you can do a lifestyle change, diet improvement, drugs that's been absolutely proven to prevent lymphedema.

Not to say there aren't measures you can take that researchers think MAY help prevent it. These include avoidance-of cuts that might become infected, insect bites, sunburn, broken bones or sprains, burns, nicking your underarm while shaving, and sitting for longer than 15 minutes in a hot tub. All on the affected side, the side on which you had radiation and/or surgery. Doctors believe you should wear loose clothing, and avoid tight-fitting jewelry. They also believe that obesity helps pave the way for lymphedema.

In the past, it was also thought that strenuous exercise could cause lymphedema. But thankfully, that's one risk factor that's recently been downgraded. Now, both weight training and rowing are being recommended for breast cancer survivors as a way to prevent lymphedema. The National Lymphedema Network's risk-reduction guidelines, which used to call for women to avoid heavy weight-bearing activities on the affected side, have been updated to say that women can safely lift weights, carry heavy bags and kids, and otherwise use their arm normally, so long as the buildup of activity is gradual, and frequent rest periods are included.

So, back to those guidelines that opened this post. Yes, you should avoid insect bites, sunburn, medical procedures, and tight-fitting jewelry on the affected side. But as for carrying heavy bags of groceries-carry on Do anything you can to strengthen the muscles on your affected side, so long as you work your way up gradually, and rest when you need to. Lift those weights. Row that boat. Exercise is always a plus-even for lymphedema prevention.