Awareness of lymphedema — excessive, debilitating swelling related to lymph node blockage — is growing, particularly as it affects women after breast cancer treatment. However, men can get lymphedema, too.
Treatments like surgery for prostate cancer, or cancer itself, may lead to chronic swelling in the legs and lower body. Lymphedema can also result from cancers of the upper body, or of the head and neck. The stubborn condition wreaks physical and emotional distress for men and women alike.
Primary lymphedema, a variation, affects children at birth. Here’s what to understand about lymphedema risks, symptoms, treatment advances and coping methods.
See: [What Only Your Partner Knows About Your Health.]
What Is Lymphedema?
The lymphatic or lymph system, part of the body’s immune system, also plays a role in fluid balance, including drainage of the watery fluid called lymph, which transports white blood cells to fight bacterial, viral and other infections. A network of lymph vessels, ducts and hundreds of lymph nodes branches out into the body.
You can feel lymph nodes if they become enlarged, for instance with an infection, in your armpits (or axillae), groin or back of the knees.
Lymph node involvement in cancer typically occurs from cancer that has spread from other parts of the body. Lymph nodes may be removed as part of surgery to treat cancer. Even healthy lymph nodes can be damaged in the course of cancer surgery and radiation.
Lymphedema — when fluid backup occurs as lymph node drainage is hampered — can result. Although lymphedema can be managed, there is no cure. Estimates vary widely, with some studies suggesting about 3 million people in the U.S. are affected by lymphedema.
Cancer-Related Lymphedema
Among both sexes, “In terms of cancers that cause lymphedema, the No. 1 most common is breast cancer,” says Dr. Brandon Mahal, a physician with the department of radiation oncology at the Dana-Farber Cancer Institute in Boston. Men can get breast cancer and related lymphedema, too. Next are cancers such as sarcoma, melanoma and women’s gynecological cancers, with men’s genitourinary cancers of the penis, genitals or prostate lower on the list.
Cancer treatment may cause lymphedema as a side effect. In some cases, the tumor itself causes lymphedema. With lymphedema related to prostate cancer, Mahal says, “The most common reason is removal of the lymph nodes by surgery, or treatment of the lymph nodes with radiation, or even the cancer itself growing big enough to obstruct the lymphatics.”
Swelling of one limb only (an arm or leg depending on the cancer site) is the most typical feature, Mahal says, although both limbs are sometimes affected. “Typically, the patients themselves notice it first,” he says. “That’s the early stages. It’s just a very subtle sort of swelling.” Later stages are different. “More obvious swelling, sometimes pain, debilitation, fatigue and difficulty moving around are the most common presenting symptoms, particularly for men with prostate cancer who end up getting lymphedema.”
See: [10 Things Younger Men Should Know About Prostate Cancer.]
In early stages, Mahal says, lymphedema can only be picked up based on limb measurements before and after cancer treatment. “With lymphedema, there’s not necessarily a harm to survival,” he says. “The lymph system still does its vital functions. But the lymphedema itself, when it gets very bad, can be linked to severe detriments.”
Loss of function, strength, and range of motion or flexibility in the limb and joints are usually the worst lymphedema symptoms, Mahal says. “At the most extreme end, a lot of folks who have severe lymphedema suffer from depression and anxiety, particularly in the cancer population.”
Previously, Mahal says, for patients with prostate cancer undergoing older surgical and radiation treatment methods, the long-term risk of lymphedema was about 5 percent. “Now, with robotic surgery and more sophisticated radiation, IMRT or intensity-modulated radiation therapy, that risk is only about 1 to 2 percent long-term,” he says. “But when it does occur, it can be equally detrimental to a patient’s quality of life.”
Coping With Lymphedema
Certified lymphedema therapists are health care professionals, such as physical therapists, occupational therapists, nurses and physicians, who receive specialized lymphedema training. They can recommend conservative lymphedema approaches:
— Skin self-monitoring and care. Covering arms during tasks like gardening, using good hand and general hygiene and avoiding sun exposure to the skin reduce the risk of skin breakdown and infections.
— Weight reduction. Being overweight is a factor in developing lymphedema following lymph node treatment with surgery or radiation for cancer, Mahal explains. Losing weight eases extra pressure on the lymph system, and so decreases the risk of treatment-related lymphedema occurring or progressing.
— Limb wrapping. Wrapping the entire affected limb with special bandages helps push lymph fluid away from the limb.
— Massage. Manual lymph drainage, done by specially trained therapists, is another technique to redirect lymph flow.
— Compression garments. Compression long sleeves or stockings are key items for managing lymphedema. Properly fitted garments selected with help from a professional, or custom-made garments, are essential.
— Exercises. Gentle exercises can assist with fluid drainage and increase the ability of people with lymphedema to manage their day-to-day tasks.
— Electric pump. Users can place the affected limb in a pneumatic sleeve that’s connected to a pump. As the pump intermittently inflates and deflates the sleeve, the gentle pressure helps lymph-fluid flow.
Life With Lymphedema
Fred Peltz, 65, sits in his recliner with his legs elevated to keep the swelling at bay. Peltz, who was born with primary lymphedema, has been dealing with it all his life. At its worst, his legs are much heavier, thicker and wider in circumference.
“It was there but not terrible when I was a kid,” Peltz says. He recalls trying to hide the swelling. “I always wore long pants,” he says. “I never wore shorts unless I was in my own house.”
Peltz did his best to downplay health challenges. “I was active, doing things, and I wanted to be no different from anybody else,” he says. “I would go out there as a kid and play ball and do whatever kids did.”
He was finally diagnosed with lymphedema as a teen, thanks to a physician relative. “Not a lot was known about it in those days,” he says. He was referred for custom-made support garments, in his case, closed-toed socks that began at his thighs.
Compression garments help keep his swelling down. “I equate them to the kid with his finger in the dike,” Peltz says. “You can hold it back just so long. It’s not a cure — it’s an aid.”
Skin breakdown is an issue for those with lymphedema. Seeping, swollen areas make people more vulnerable to infections, including a bacterial skin infection called cellulitis. As a young man, Peltz was hospitalized and treated with intravenous antibiotics for sepsis, a severe, systemic infection.
“As an adult, I wanted to stay busy,” Peltz says. “But the activity sometimes led to more swelling, which led to what we call weeping, where the actual fluid of the body was coming out of the skin.”
Peltz, now retired, spent a three-decade career with the Postal Service in New York, in a variety of capacities. “I had jobs where I had to stand in one spot, which was the worst thing that could possibly happen to me,” he says.
See: [10 Innovations in Cancer Therapy.]
Surgery for Lymphedema
Conservative, noninvasive methods aren’t always enough to treat lymphedema. The severity of lymphedema varies, says Dr. Justin Michael Sacks, director of oncological reconstruction and an associate professor of plastic and reconstructive surgery with Johns Hopkins Medicine in Baltimore.
“Sometimes it’s just swelling,” Sacks says. “Sometimes the body forms scar tissue. And sometimes it gets so thick you get elephantiasis, where the arms look like elephant trunks.” That normally doesn’t happen with cancer patients, he adds, but can occur in patients born with lymphatic malformations or who have infections of their lymph nodes.
Cancer centers like Johns Hopkins offer surgery for patients living with lymphedema. Sacks and co-authors evaluated evidence on lymphedema surgery options in a study published February 2017 in the Journal of Reconstructive Microsurgery. These are individual surgical options:
— Excision. “One way is to just literally cut the tissue of the arm or the leg,” Sacks says. This aggressive option of removing excess tissue is rarely done unless patients have extremely large limbs, he notes.
— Liposuction. This option may be considered for patients who have massive arms or legs with fatty deposits. “We literally do liposuction and aspirate fat to decrease the volume of the leg,” Sacks explains.
— Lymph node transfer. “We take lymph nodes from the abdominal wall, for example, which don’t drain the leg, or lymph nodes in the armpit that don’t necessarily drain the arm,” Sacks says. “We then place those lymph nodes in regions of the body like the leg or arm to establish new lymphatic channels and decrease the volume of the (limb).”
— Lympho-venous bypass. With this innovative procedure, surgeons make small cuts in the leg or arm, find lymphatic channels and connect these directly to the vein. That bypasses the congested “traffic pattern” in the armpit or groin, Sacks says.
Surgery to treat lymphedema has become much more common at major academic centers for patients having trouble with conservative management, Sacks says. The decision-making process includes a test used to map lymphatic flow called lymphoscintigraphy.
Lymphedema Empowerment
“Knock on wood: I have not had a cellulitis episode in two years,” Peltz says. He and his wife (and frequent caregiver) would like to get out and socialize more, but that isn’t always possible. The combination of lymphedema discomfort plus, more recently, arthritis pain, leaves him feeling fatigued and weak, with little muscular stamina. “I don’t have the energy of someone my own age,” he says.
Peltz now checks in periodically with a lymphedema specialist. He’s connected with several online lymphedema patient communities like The Lymphie Life. Recognition is getting better, he notes, but it’s still not mainstream: “‘Be your own advocate,’ is what we say, because no one is going to advocate for you.”
Peltz and his peers are keeping an eye on progress for the Lymphedema Treatment Act now awaiting congressional action and supported by multiple health care organizations. If passed, the legislation would provide for Medicare coverage of doctor-prescribed compression supplies and other measures to reduce complications, disabilities and hospitalizations arising from lymphedema.
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Can Men Get Lymphedema After Cancer Treatment? originally appeared on usnews.com
