Lymphedema is a chronic swelling or edema in a limb caused by a build-up of lymph fluid. This happens when the lymphatic system is damaged in some way.
One common cause of damage is surgery, particularly breast cancer surgery since one or more lymph nodes are commonly removed at the time of lumpectomy or mastectomy as a way to determine if the cancer has spread.
Lymph nodes, clumped in locations throughout the body, are part of our immune system and are essentially filters that trap whatever the lymphatic fluid sends their way — bacteria, viruses, fungi or cancer cells — so the body's immune system can clean house. When lymph nodes are removed or damaged, lymph fluid can build up.
Although there is no cure for lymphedema, there are treatments that can be effective, such as wearing a compression sleeve, specialized lymphatic massage from a physical therapist and the daily use of an intermittent pump to massage out swelling.
Thanks to the passage of the 2022 Lymphedema Treatment Act, which went into effect at the beginning of this year, it should be easier to get insurance coverage for compression supplies that are the cornerstone of lymphedema treatment.
In addition to these measures, there are surgeries that can help get the lymphatic system back on track. A regular Fred Hutch News reader was curious about these surgeries, a great question for March, Lymphedema Awareness Month.
For answers, we reached out to Duane Wang, MD, a UW Medicine/Fred Hutchinson Cancer Center surgeon specializing in cancer reconstruction to find out more on the latest ways to treat this little-known side effect that can have a huge impact on cancer survivors.
Wang, and half a dozen other UW Medicine surgeons, have all been trained in lymphedema surgery and the practice is part of the Lymphedema Education and Research Network, known as LE&RN. The UW Medicine Department of Surgery has been designated by LE&RN as part of the Lymphedema Network of Excellence.
“Lymph node surgeries first started being developed in the mid-2000s,” Wang said. “At this institution we have started doing more and more in the last four or five years.”
Although it’s difficult to estimate how many of these surgeries are done every year, research has looked at the efficacy of the procedures. One 2021 meta-analysis found surgery reduced lymphedema by 40% and decreased infection rates in patients significantly. Nearly half were able to quit using compression garments post-surgery.
Because it is relatively new, however, insurance may balk at covering the surgery, Wang said.
“They label it as investigational a lot of the time and there’s a lot of back and forth,” he said. “Lots letters, lots of peer-to-peer review.”
Some states, like Massachusetts, mandate that insurance approve the procedure, he said. And as more and more data are published showing its efficacy, he believes additional states will mandate coverage.
“I’m hopeful, but it will probably have to be a legislative measure to make the change,” he said. “Maybe in about three or four years. Insurance companies are obviously trying to restrict costs.”
And lymph surgery can be expensive, depending on what kind you get (one 2021 paper estimated costs between $22,000 and $32,000, depending on surgery).
But non-surgical treatment for lymphedema is spendy, too.
“The average cost is about $20,000 a year for lymphedema care after you’ve developed it,” Wang said. “If you just get a sentinel node biopsy, the risk of lymphedema is pretty low, but if you get axillary dissection [full lymph node dissection of the underarm region] and most likely radiation to your armpit and the breast, then your chances of getting it are like 60 to 70%.”
— UW Medicine/Fred Hutch surgeon Dr. Duane Wang
As for surgical treatments, there are three commonly in use.
The newest technique is done at the same time as the axillary dissection, which usually happens during lumpectomy or mastectomy. Called LYMPHA, for Lymphatic Microsurgical Preventive Healing Approach, it involves rerouting the cut lymphatic channels so they drain into a nearby vein.
“The usual procedure is for the surgeon to inject dye into the upper arm to do the dissection and then after they’re done with that [and the breast surgery], we come in,” he said. “We find the cut ends of the channels using a microscope and then we find a nearby vein and reroute the channel into that. This decreases the risk by 60 to 70% and if people do get lymphedema, it’s not as severe.”
But it’s not covered by insurance.
Wang said the out-of-pocket cost is around $5,000 if someone opts to have it done at the same time as their breast cancer surgery (the only time this surgery can be done). After breast surgery and lymph node biopsy or dissection, there’s too much scar tissue to locate the lymph channels.
“That’s as cheap as we can make it,” he said, adding that 80-90% of his patients are paying the out-of-pocket cost. “You’re only paying for anesthesia time and materials; we’ve waived the plastic surgeon’s fee and the breast cancer surgeon is paid by insurance.”
For patients who have standard breast surgery and develop lymphedema afterward, there are two other surgeries that can help: lymphovenous bypass, or LVB, and vascularized lymph node transfer.
In LVB, instead of rerouting cut lymphatic channels in the armpit region, the surgeon reroutes them to the arm, Wang said.
“This is similar to LYMPHA, but instead of finding cut ends in the armpit, you find them in the extremity itself,” he said. “You can use a fluorescent dye to map out everything. If you have functional lymphatics in the arm, you can make small cuts and find the channels and then reroute them to a nearby vein.”
Lastly, there’s vascularized lymph node transfer, which involves taking lymph nodes from another part of the body such as the collar bone area, the groin, the omentum (stomach area) or underneath the chin and surgically transplanting them into the affected area to improve lymph drainage.
“The transferred lymph nodes act as both a sponge to soak up fluid in the area and also stimulate the growth of new lymphatic channels,” Wang said, adding that UW Medicine surgeons perform around 10 to 20 of these procedures a year.
No matter what option a patient chooses, including no surgery whatsoever, Wang said it’s essential that people get evaluated and treated for lymphedema as soon as possible.
“The thing with lymphedema is the earlier you catch it, the more effective interventions will be,” he said. “Even if you’re just doing compression therapy and lymphatic massage and elevation. Once you get lymphedema, it’s always going to progressively get worse without treatment.”
Lymph fluid will sit in the tissue and cause permanent inflammation and tissue fibrosis, Wang said.
“It’s more of an immune response than we initially thought,” he said. “Your body almost attacks your own tissue. If you get on it earlier, that means there’s less fluid in the limbs and your body hasn’t had a chance to scar up those channels yet.”
The idea behind lymph surgeries, he said, is to slow that trajectory so it minimizes the symptoms over time.
“We can never cure the lymphedema long-term,” he said. “But the earlier you intervene, the faster you slow the trajectory and have better quality of life.”
Luckily, surgically excising all lymph nodes during a cancer surgery is no longer the standard of care for breast cancer patients.
“In my experience, surgeons are now pretty conservative about taking extra lymph nodes when they don’t have to because of the morbidity associated with lymph node dissection,” Wang said. “Hopefully we’ll see less lymphedema now.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org. Just diagnosed and need information and resources? Visit our Patient Care page.
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