Lymphedema Myths and Misconceptions, From Exercise to Blood Draws

Attitudes are changing around lymphedema — and with that shift comes a handful of common myths and misconceptions that need dispelling, as one expert explained.

Lymphedema is a buildup of protein-rich fluid in a body part’s interstitial space between the skin and the muscle, and patients with cancer who have lymph nodes removed are at risk for experiencing it.

“It can actually cause the body part to swell because there's more fluid than there should be,” explained Leslie Waltke, a physical therapist who specializes in oncology. “And there's also sometimes a component of that swelling that can make the limb, the arm, the leg, the chest, the head and the neck — it can happen anywhere where there's lymph node removal — that it can make it not only just swollen, but can make it thicker and harder.”

Waltke, who founded the Waltke Cancer Rehabilitation Academy and is a member of the CURE advisory board, said in an interview that it is crucial for patients to understand their lymphedema risk profile.

“For some cancers, it's extremely, extremely low — colon cancer, for example. For some endometrial cancers, it can be incredibly high, in the 60% to 70% range, depending on where they're taking lymph nodes. [For] the average person with breast cancer who has a standard axillary dissection from their underarm, it can be in the range of 15% to 20%; for somebody who's had just a sentinel lymph node biopsy of one or two [or] three nodes, it can drop to 5%.”

Axillary surgery involves the removal lymph nodes in the armpit region, while a sentinel lymph node biopsy is the removal of the first lymph node where the cancer has most likely spread to from a primary tumor, and can involve multiple nodes, according to the National Cancer Institute.

“It's an incredibly important conversation to have with your surgeon about what exactly happened to your surgery,” Waltke said. “How many lymph nodes were removed, where were they removed from and what type of cancer? Because that really makes a difference in somebody's risk profile, and that's important to know, because yours is probably different than somebody else's.”

Attitudes around precautions patients need to take are evolving, Waltke said.

“Having a blood pressure [check] on your involved arm does not increase lymphedema risk,” she said. “And we've been telling people for decades not to get their blood pressure done on that arm. And it turns out that there's no evidence that that's actually accurate, so we're removing that from our list of precautions.

“Another huge one is, don't get blood draws on an arm that has had lymph nodes removed.That, too, has no evidence behind it, so you'll now see that that's being removed from lymphedema precautions.”

In years gone by, patients with lymphedema were advised to avoid physical activity. The opposite, it turns out, is true.

“Back in the day, we didn't understand lymphedema well. Back in the ’40s and ’50s, first of all, cancer surgeries were a lot different back then; they've gotten more precise, more specific, but we didn't understand what really triggered [lymphedema], so the general rule is, well, don't do anything: Don't lift, don't push, don't carry, don't pull and you'll be fine. Well, we learned out from evidence, that that's not necessarily true, and that people that sat on the couch had the same amount of lymphedema compared to people that were out enjoying their life and doing things.

“So the [advice about] don't push, don't pull, don't lift, don't carry, has also been a myth, that if you don't do that stuff, it's going to protect you, and we've now actually learned that for people at risk for lymphedema, if they exercise regularly, if their arm or their leg or wherever they are, at risk is strong and fully mobile, nice and healthy, that they're using it regularly, that they're exercising regularly, that actually decreases risk. So we're actually asking people post-cancer surgery to stretch, to lift weights, to push, to do aerobic exercise, because that's actually a way to prevent or decrease the risk of it developing in the first place.”

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