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 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 following 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 (ALND). As many as 1 in 4 people who use 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 the completion of breast cancer treatment.

What Are the Symptoms of Lymphedema?

For some people, lymphedema appears suddenly. For others, it may be gradual. Some 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 appear near the part of the body that received treatment. Symptoms of breast cancer-related lymphedema include:

• Aches, pains, or tenderness
• Tingling or “pins and needles”
• Feelings of warmth
• Puffiness
• Feelings of heaviness or fullness
• Decreased flexibility
• Smoother skin or harder-to-see veins or wrinkles
• Skin changes, including thickening, darkening, or hardening of the skin
• A feeling that clothes, undergarments, or jewelry fit differently than they used to

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.”

What Causes Lymphedema?

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.

Lymphedema Risk Factors

Experts don’t know exactly what causes lymphedema to begin or why some people develop it while others don’t. However, they have identified certain factors that increase the risk of lymphedema:

• Having many lymph nodes removed, rather than just one or a couple
• Having multiple or more extensive surgeries in the area of the breast or chest
• Undergoing radiation treatments that cover a wider area of the chest or underarm
• Receiving chemotherapy or other intravenous (IV) treatments on the same side of the body that was surgically treated
• Experiencing an injury or infection on the same side of the body that was surgically treated
• Being overweight

Can Lymphedema Be Prevented?

Because doctors don’t know lymphedema’s exact causes, it’s not entirely clear which practices can help prevent it. However, doctors often recommend certain steps. Many MyBCTeam members have successfully implemented strategies to prevent lymphedema.

Maintain Proper Activity Levels

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.

One MyBCTeam member with 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.

Protect the Affected Arm

Injuries and infection can increase lymphedema risk. There are several ways to protect your skin:

• Try to avoid skin dryness, sunburn, and hangnails by practicing basic skin care.
• Wash cuts with soap, and use antibiotic ointment before bandaging.
• Avoid very hot or cold temperatures.
• Don’t wear tight-fitting jewelry or clothing on the arm on the same side as the breast surgery.
• If you need shots, blood draws, or blood pressure tests in the future, use the unaffected arm or a different location in the body.
• Be careful when cutting food or using sharp objects to avoid potential cuts on the same side of the body as the surgery.

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.”

Seek Out a Specialist

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.”

Screen for Lymphedema

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 undergoing changes in size, feeling, or color, let your doctor know.

How To Manage Lymphedema

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.

Physical Therapy for Lymphedema

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 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.”

Home Treatment Options 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 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.”

Compression Garments for Lymphedema

Many MyBCTeam 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 member.

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.

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 Lymph Drainage

Manual 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 saw good results: “I saw a lymphedema therapist, and she taught me different massages to help soften the hardened areas.”

Surgery

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 a 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.

Talk With Others Who Understand

MyBCTeam is the social network for people with breast cancer and their loved ones. On MyBCTeam, more than 53,000 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? Share your experiences in the comments below, or start a conversation by posting on MyBCTeam.