Understanding and Managing Lymphedema

If your cancer treatment plan included lymph node removal or radiation therapy, you might be experiencing swelling in the area that causes discomfort and redness. This is caused by a common side effect of cancer treatment called lymphedema. Understanding more about it and what to look for can go a long way including lowering your risk of it developing in the first place. But, if you already have it, there are several steps you can take to manage it.  

What is Lymphedema? 

Lymphedema is swelling (edema) in the body that occurs when the lymphatic system is malfunctioning. The lymphatic system is an important part of the immune system that moves lymph fluid through the body to help fight infections. This fluid acts as a “cleaner” of the body’s waste and foreign cells. When there are fewer lymph nodes, or the lymph nodes have been damaged, it’s harder to return lymph fluid to the bloodstream. This causes the fluid to build up  in the soft tissues under the skin leading to progressive swelling over time.

There are two types of lymphedema. Primary lymphedema is a rare genetic condition that some people are born with. Secondary lymphedema, however, is more common especially in cancer patients who have undergone surgery or radiation for cancer. 

While this type of swelling can occur after treatment for any kind of cancer, it is more likely to affect those who have been treated for cancers where there are lymph nodes nearby that may need to be removed to be sure all the cancer cells have been taken out. These cancers include: 

Usually, lymphedema affects the arms or legs. It’s most common in the arms for breast cancer patients and the legs for cancers of the reproductive system or genitourinary system (such as bladder cancer). However, it can also develop in other parts of the body including the neck, face, mouth, abdomen, or groin. 

Causes of Lymphedema

When cancer treatments, including surgery, damage the lymph system there’s a chance it will result in lymphedema. The most common causes of this condition can include: 

  • Lymph node removal surgery, which slows down the proper flow of lymph fluid. The risk of lymphedema increases with the number of lymph nodes affected. 
  • Radiation therapy that caused tissue scarring, resulting in damaged lymph nodes and/or obstructed lymph vessels.
  • Blockage within the lymphatic system due to the cancer itself. 

Symptoms of Lymphedema 

It’s important to know the signs and symptoms of lymphedema so it can be treated right away. Some people experience symptoms suddenly after treatment, while others don’t experience them until later on, sometimes months or even years, afterwards.

Common signs and symptoms of lymphedema can include:

  • Swelling in the part of the body that is affected. This could include areas like the breast, chest, shoulder, arm, or leg.
  • Skin changes, such as tightness or hardness, itchiness (especially in legs or toes), change in texture, red in color, feeling hot, or leaky blisters. 
  • Less movement or flexibility in nearby joints (such as your hand, wrist, or shoulder).
  • New aching, tingling, numbness, or other discomfort in the area. The area might also have a sense of fullness or heaviness. 
  • Collars, rings, watches, and/or bracelets feel tight even though you haven’t gained weight.
  • Difficulty fitting your arm into a jacket or sleeve, or trouble fitting into or buttoning your pants.

Be sure to talk with your RMCC cancer care team if you experience any of the above symptoms so the appropriate steps can be taken. When diagnosed early, you can receive the intervention needed to help lessen the severity of your symptoms and prevent them from getting worse. 

Stages of Lymphedema

Lymphedema develops in a progressive manner, from mild to severe, and is described in stages ranging from stage 0 to stage III (3): 

Stage 0: No visible swelling even though the lymphatic system may be damaged. There may be subtle signs, such as a feeling of heaviness or ache in the affected area. This stage can last for months or years.

Stage I: Obvious swelling of the affected area. It may feel heavy or stiff. Swelling usually improves when the limb (arm or leg) is elevated or when compression socks or sleeves are worn. This stage of lymphedema may go away without treatment.

Stage II: Skin may or may not indent to the touch. There is moderate to severe skin thickening.  Compression and elevation alone will not reduce the swelling.

Stage III: This is the most advanced stage of lymphedema. The skin on the affected body part is thick, dry, and hard; the area is greatly enlarged. The swelling may cause blisters or leakage and movement is difficult. Stage III is permanent. 

Typically, the later stages (II and III) don’t respond very well to treatment. There is also an increased risk for cellulitis, a bacterial skin infection. Because of this, it is best to seek care during the early stages of lymphedema. 

Ways to Manage Lymphedema 

Unfortunately, there is no cure for lymphedema. However, treatment can help by: 

  • Reducing swelling
  • Preventing infection
  • Preventing lymphedema from getting worse
  • Improving your ability to function
  • Improving how the affected body part looks

A certified lymphedema therapist (CLT) can work with your RMCC cancer care team to develop a plan to help you manage your lymphedema. This plan might include: 

  • Drinking water: This may seem like the opposite of what you need when your body is swelling. But drinking water consistently makes it easier for your body to flush out the toxins and get the lymph fluid moving again. 
  • Elevating: Routinely elevating the affected limb may be recommended to encourage drainage and reduce swelling.
  • Compression: This might include the use of bandages, tape, garments, or devices to maintain gentle pressure, minimize swelling, and prevent fluid from refilling in the impacted area. There are some sleeves available for the arms and legs that can be purchased to help keep the swelling from starting. Talk to your cancer care team about whether this is a good option for you.
  • Skin care: Taking extra precautions in your skin care routine is very important to reduce the risk of the skin becoming infected. Your cancer care team will show you how to keep the area clean and moisturized with a non-irritating cream. They can also give you guidance on how to avoid injuries to your skin. Suggestions might include protection against sunburn and tips for shaving, such as using an electric razor to reduce the chance of cuts.
  • Exercising: Swelling tends to go down when you get moving. This can be hard, however, if you have one arm or leg that’s swollen. Specific movements can improve range of motion, increase strength, and allow for better flow of lymphatic fluid throughout your body. 
  • Manual lymphatic drainage (MLD): This is a professionally-administered gentle massage that allows fluid to drain into the bloodstream properly.
  • Complete (complex) decongestive therapy (CDT): This is a combination of manual lymphatic drainage, skin care, compression, and exercise directed by your doctor or CLT

Be sure to talk with your oncologist or cancer care team member to see if there are any other appropriate ways to help manage your lymphedema. This might include additional treatments or antibiotics to prevent secondary infections. 

Lowering Your Risk of Developing Lymphedema

If you have not yet been diagnosed with lymphedema, there are some steps you can take to lessen the risk of developing it after cancer treatment. This includes: 

  • Maintaining a healthy weight.
  • Staying hydrated. Drink plenty of water every day.
  • Avoiding crossing legs, sitting, or standing for long periods.
  • Wearing loose clothing without tight elastic bindings.
  • Limiting exposure to severe temperatures, hot or cold.
  • Not taking blood pressure readings, inserting an IV, or drawing blood from the affected limb.
  • Seeking immediate medical attention if experiencing skin that is newly hot to the touch, red, swollen, or painful.

The cancer specialists at Rocky Mountain Cancer Centers are here to help you prevent and better manage lymphedema after cancer treatment.