If your lymph nodes were removed during breast cancer surgery or damaged during radiation treatments, you may be at risk for lymphedema. Lymphedema occurs when lymph fluid cannot circulate normally and builds up in the arm, breast, or hand, causing swelling and pain.

About 20 percent of women experience lymphedema as a side effect of breast cancer treatment, including many members of MyBCTeam. Among those who develop the painful condition, approximately 90 percent do so within three years after the completion of breast cancer treatment.

One MyBCTeam member reported symptoms of lymphedema nine months after undergoing lumpectomy and radiation. She stated, “My treated breast swells up during the day and seems to be worse on hot days.” Another shared: “Lymph node dissection has caused lymphedema, and is the hardest part of my recovery now. Just curious to see how others are coping.”

While there’s no cure for lymphedema, early treatment has been known to reduce symptoms and keep them from getting worse. Members of MyBCTeam are proactive about preventing and treating lymphedema – as well as sharing their experiences of various recommended techniques.

Physical Therapy for Lymphedema

Many members report positive results with decongestive therapy. It’s typically performed by a physical therapist (PT) specializing in lymphedema.

“PT has helped so much,” shared one member, echoing the comments of others. “Going to a licensed therapist was really helpful,” shared another. “Prevention is the key.”

During physical therapy, practitioners typically massage and stretch the affected area to break up hardened or rope-like tissue – often referred to as “cording” - that can develop with lymphedema. “They massage them away, like a miracle. It was awesome for me,” said one MyBCTeam member. Some women find PT a little less comfortable. “My therapist worked on [cording] between mildly torturous moves.”

Therapists sometimes use a combination of proven modalities. “My PT used some acupuncture to help break up the cording! It took away all the pain!!” Another member said her therapist “broke up hardened tissue with massage and a low-level laser.”

Compression Garments for Lymphedema

Many members have had good results with compression garments (bras, sleeves, bandages or gloves), which apply light pressure to keep lymphatic fluid circulating. “I wear a compression pad under my bra, a sleeve on my arm, and a glove on my hand. They seem to help while I’m wearing them,” reported one woman.

Poorly fitted compression sleeves, however, can cause additional swelling, some members report. “You have to be measured to get the right compression so you don’t do more harm than good, I’ve heard,” said one.

Because compression garments may be worn for an extended period of time, some women rock “designer” sleeves on MyBCTeam. “[This is] my new fashion accessory,” said one member showing off her brightly patterned sleeves. “I know there are no guarantees, but I will do everything I can to prevent lymphedema.”

Home Treatments for Lymphedema

Home exercises are often prescribed as an adjunct to clinical therapy. “My physical therapist recommended self-massages and two other sets of exercises, along with using weights and bands,” said one member. Another added: “The more I exercise, the fewer problems I have with my lymphedema.”

Not doing “homework” has consequences, members admit. “When I forget to do the exercises, [my arm] gets so tight, I have to get it loosened up again,” said one woman. “I used to do my arm exercises in the evening while I watched TV. Last night I forgot, so I’m now raising my left arm while I brush my teeth with my right,” she explained.

Some members have home compression pumps that mimic the therapists’ work. The devices connect to a compression sleeve and inflate or deflate to encourage the circulation of fluid.

“Just finished my first hour using the lymphedema pump at home! My hand and forearm actually feel normal again (soft and wrinkly instead of swollen and tight),” shared one MyBCTeam member. Said another: “My lymphedema ‘air sleeve’ is working wonders. I can’t wait to go to bed and not have to worry about rolling over my arm anymore!”

On MyBCTeam, the social network and online support group for those living with breast cancer, members talk about a range of personal experiences including lymphedema.

Here are some question-and-answer exchanges about lymphedema:

• Has anyone been treated for swelling or lymphedema in the breast months after radiation ended?

• Does anyone have a problem with swelling only while wearing a compression sleeve?

• Did you get an arm tattoo in the affected side post lymph dissection? Did you get lymphedema?

• Has anyone ever had trouble with lymphedema when they got sick from a cold or virus?

Here are some conversations about lymphedema:

• “Lymph node dissection has caused lymphedema.”

• “I’ve been in physical therapy for lymphedema in my chest area and side.”

• “I wear my compression sleeve as directed by my lymphedema specialist for prevention.”

Have another topic you'd like to discuss or explore? Go to MyBCTeam today and start the conversation. You'll be surprised by how many others share similar stories.