Lymphedema is a possible side effect of certain breast cancer treatments, especially surgery and radiation. Lymphedema occurs when lymph fluid cannot circulate normally and builds up in the arm, hand, breast, chest, or abdomen. This buildup of fluid causes swelling and pain.
Overall, about 1 out of 5 people who undergo breast cancer treatments develop lymphedema. However, this side effect may be more or less likely after certain treatments. For example, some people with breast cancer undergo a sentinel lymph node biopsy (SLNB), in which one or a few lymph nodes are taken out. Fewer than 7 percent of people who undergo this procedure are diagnosed with lymphedema. On the other hand, many lymph nodes are removed during an axillary (armpit) lymph node dissection. As many as 1 in 4 people who have this procedure develop lymphedema. Radiation therapy to the axilla, especially after axillary lymph node dissection, increases the risk of developing lymphedema.
Lymphedema most often occurs soon after treatment. Among those who develop the painful condition, approximately 90 percent do so within three years after completing breast cancer treatment.
For some people, lymphedema appears suddenly and for others, it may develop over time.
For some people, lymphedema appears suddenly. For others, it may be gradual. Some individuals first experience numbness or tingling in a particular area. One MyBCTeam member wrote, “My earliest recognizable symptom was elbow pain.” Another said, “The first time we found [lymphedema], the tips of my fingers were numb and tingling.”
Over time, other symptoms may also show up near the body part that received treatment. Signs and symptoms of breast cancer-related lymphedema include:
One MyBCTeam member reported symptoms of lymphedema nine months after undergoing lumpectomy and radiation: “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.”
Lymphedema develops when there are problems with the lymphatic system — the network of tubes, tissues, and organs that fights infection, gets rid of waste, and controls levels of fluid throughout the body. A clear fluid called lymph flows through the lymphatic system, removing germs and waste from tissues.
Certain breast cancer treatments can prevent the lymphatic system from functioning correctly. Surgery and radiation therapy may damage lymph nodes or lymph vessels. These treatments may prevent lymph from flowing normally. When lymph isn’t properly drained, it can build up in different parts of the body, causing swelling.
Experts don’t know exactly what causes lymphedema to begin or why some people develop it and others don’t. However, they have identified certain factors that increase the risk of lymphedema:
Because doctors don’t know lymphedema’s exact causes, there is no known way to prevent it entirely. However, there are some steps that reduce the risk of developing the condition. These include having a specific exercise routine and taking good care of your skin.
The best way to help prevent lymphedema is to act before surgery. Talk to your doctor about your specific breast cancer surgery and what your risks of lymphedema are. Some surgeries that remove fewer lymph nodes, such as the SLNB, are less likely to cause lymphedema. The more lymph nodes that are removed, the higher the risk of developing the condition will be. Try looking at pictures of lymphedema before surgery so you can recognize what it might look like. Being prepared before surgery and understanding your risk of lymphedema can help you recognize symptoms and take steps to help prevent it.
Ask your doctor what activities to avoid when recovering from breast cancer surgery. Many doctors recommend taking it easy while recovering. You may need to avoid certain arm or shoulder movements and steer clear of lifting heavy objects. It may also help to elevate your arm by propping it up at an angle.
MyBCTeam members sometimes ask how to prevent lymphedema, and others are quick to share their recommendations and warnings. One member who developed lymphedema emphasized the importance of going slow: “I think [lymphedema] came on initially because I lifted more than I was supposed to pretty soon after surgery (groceries, heavy boxes, etc.).”
After the affected limb is healed, you should use it regularly for everyday tasks. A physical therapist can help you plan an exercise routine to keep the muscles in your arm, shoulder, and chest strong and free from scarring.
Injuries and infection can increase lymphedema risk. There are several ways to protect your affected arm:
One MyBCTeam member who experiences swelling shared, “I personally find anything constricting around my breast to make matters worse, and then I actually start to get swelling in my left arm.”
Certified lymphedema therapists (CLTs) have been specially trained to work with people who experience lymphedema. If you are worried about this side effect, ask your doctor if they can refer you to a specialist. CLTs may be physical therapists, occupational therapists, massage therapists, athletic trainers, nurses, or doctors.
“Going to a licensed therapist was really helpful,” shared one MyBCTeam member. “Prevention is the key.” Another member felt similarly: “Because I kept working, I just couldn’t fit in physical therapy on top of everything else and didn’t start doing physical therapy until almost a year post-surgery. It would have been better to have started earlier, as I still have to be cautious about swelling.”
You may be able to get regular screenings for lymphedema to look for early signs of swelling. Screening may be provided by your doctor or by a lymphedema therapist. Ask your doctor how often you should be screened for lymphedema. Additionally, keep an eye on the areas of your body where you underwent treatment. If you ever notice that an area is changing in size, feeling, or color, let your doctor know.
There is currently no cure for lymphedema, but early treatment may reduce symptoms and keep them from getting worse. If lymphedema is not treated, it can permanently damage tissues. Members of MyBCTeam are proactive about treating lymphedema, as well as sharing their experiences of various recommended techniques.
Many members report positive results with complete decongestive therapy (CDT), a form of physical therapy (PT). CDT is typically overseen by a lymphedema specialist. It is a program that combines many different techniques to reduce and control lymphedema. “PT has helped so much,” shared one member, echoing the comments of others.
During lymphedema physical therapy, practitioners typically massage and stretch the affected area to break up hardened or ropelike 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 people 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 their therapist “broke up hardened tissue with massage and a low-level laser.”
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 member. “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.”
Many MyBCTeam members have had favorable 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 member.
Poorly fitted compression sleeves and lymphedema wraps, however, can cause additional swelling, members remind others. “You have to be measured to get the right compression so you don’t do more harm than good,” said one.
Some compression garments are paired with a pneumatic pump for applying pressure. The devices connect to a compression sleeve and inflate or deflate to encourage the circulation of fluid. Some pumps use sequential compression garments to move the fluid up from the arm, and some can also massage the upper chest.
“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!”
Manual (by hand) lymph drainage is a form of massage that helps drain extra fluid away from tissues affected by lymphedema. Manual lymph drainage and other forms of massage can help relieve lymphedema symptoms.
One member uses this technique in addition to a compression sleeve and glove. “I am currently in therapy with a lymphedema specialist who massages my left arm and chest to drain the fluid. It really works.” Another member also experienced positive results: “I saw a lymphedema therapist, and she taught me different massages to help soften the hardened areas.”
Sometimes, treatment of lymphedema includes surgical procedures. During lymphovenous bypass, a surgeon can connect blocked lymphatic vessels to nearby veins to help drain fluid. Another surgical option is lymph node transplantation, in which surgeons remove healthy lymph nodes from a different part of the body and then place them in the area affected by lymphedema.
One MyBCTeam member had a friend who underwent a lymph node transplant. “She had it done about two years ago, and her lymphedema has improved a lot,” the member reported.
MyBCTeam is the social network for people with breast cancer and their loved ones. On MyBCTeam, more than 58,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.
Are you living with lymphedema? Has anything helped manage it? Share your experiences in the comments below, or start a conversation by posting on MyBCTeam.