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How to Manage Cancer-Related Lymphedema

How to Manage Cancer-Related Lymphedema

Reviewed by Jasper Clinical Board

Last updated 5/24/21


Lymphedema is swelling caused by the buildup of lymph fluid under the skin. It most commonly affects one arm or leg, but can affect both arms or legs or other parts of the body. People with cancer can develop lymphedema when a tumor or treatment damages or removes lymph nodes, vessels, or other parts of the lymphatic system.
Lymphedema is a long-term condition that can arise and/or remain years after cancer treatment ends. Its symptoms can be mild, or may be more severe and cause noticeable swelling that makes it harder to use the affected body part. 
There’s no cure for lymphedema. Fortunately, you can take steps to reduce your risk for it—and learn how to minimize its impact on your health and activities. Here’s what you need to know about lymphedema and cancer.

Lymphatic system 101

The lymphatic system is part of the immune system. It’s made up of lymph nodes, vessels, and certain organs, including your tonsils, adenoids, spleen, and thymus. The lymphatic system moves a fluid called lymph through your body, similar to how your circulatory system moves blood. 
Lymph fluid collects wastes and potentially harmful substances like cancer cells and bacteria that can cause infection. Lymph nodes—small glands located throughout your body—filter the lymph fluid so the wastes can be removed. 

Primary vs. secondary lymphedema

If you’re diagnosed with lymphedema, it will be categorized as either “primary” or “secondary.” Primary lymphedema is a rare hereditary condition that causes the lymphatic system to develop abnormally. Secondary lymphedema is much more common. “Secondary” means that the lymphedema has been caused by another health condition that has affected the lymphatic system’s functioning. 

Cancer and secondary lymphedema

The most common causes of secondary lymphedema in the US are cancer-related. Cancer itself can cause lymphedema when a tumor blocks lymph vessels or nodes. Lymphedema can also develop as a side effect of treatment, if lymph nodes or vessels are damaged or removed during radiation therapy or surgery. Often lymph nodes need to be removed entirely to check for cancer or reduce its spread, especially in breast cancer patients. 
All of these situations reduce the pathways available for lymph fluid to move through the body. This makes the buildup of lymph fluid in the tissues more likely, similar to how a dam causes free-flowing water to form a pool. 
Other health conditions that can cause secondary lymphedema include rheumatoid arthritis, eczema and other inflammatory diseases, cardiovascular diseases like deep vein thrombosis or varicose veins, and certain kinds of infections and parasites.
People who are overweight or obese are more likely to develop lymphedema. So are cancer patients who have had several lymph nodes removed or who have had more extensive or multiple surgeries to the chest (making damage to lymph nodes and vessels more likely). Radiation therapy for breast cancer directly to the underarm area can also increase the risk of lymphedema, since many lymph nodes are affected. 
Injury or infection on the side of the body where you had cancer surgery also increases lymphedema risk, since the lymphatic system may be weaker and more easily overwhelmed in that area. Older age is another risk factor for lymphedema. 

Reducing your risk

There are many risk factors for lymphedema that you can’t control, such as your age and the number of lymph nodes affected by your cancer treatment. However, there are some steps you can take to minimize your risk as much as possible.

Maintain a healthy weight

During and after cancer treatment, work with your care team to keep an eye on your weight. Chemotherapy and steroid drugs can lead to weight gain. So can feeling unwell and fatigued, since you’re more likely to be sedentary. Ask your doctor for advice about maintaining a healthy weight during treatment, and enlist friends and family to help with healthy eating habits and to join you in regular light exercise like walking. After treatment, consult with your doctor about developing an exercise plan tailored to your body’s needs during recovery. 

Protect your skin from scratches and cuts

It’s important to protect yourself from skin breaks and injuries, even minor ones, in areas where lymph nodes were damaged. Infection and inflammation can increase your chances of developing lymphedema. 
Use lotion to keep your skin from becoming dry and cracking. Wear gloves when gardening or doing housework or other hobbies that could cause skin breaks. If you have pets, keep their nails trimmed. Wear long sleeves and insect repellent when needed. Avoid damaging your cuticles or cutting your nails too short. 

Request that medical treatments be moved to other areas of the body

During your cancer treatment, tell your medical team about all your health conditions, including any additional risk factors for lymphedema. If possible, have any blood draws, intravenous therapies, or injections be done in a different area of your body than where you had surgery. (You may need to remind your team every time you receive treatment.) You can continue to make this request during any future medical treatment as well.

Diagnosing lymphedema

Symptoms of lymphedema can be subtle or very noticeable depending on how severe the condition is when it’s diagnosed. Early treatment can help keep lymphedema from getting worse, so it’s important to tell your doctor right away if you notice any of these signs:
  • Jewelry, clothing or shoes no longer fit comfortably
  • Feeling of tightness, heaviness or fullness in a limb
  • Obvious swelling in all or part of an arm or leg
  • Swelling in the head and neck, genitals, trunk, or abdomen
  • Restricted range of motion in a limb or decreased flexibility in a joint
  • Discomfort in the affected area, such as warmth, itching, tingling, or aching
  • Thickening or hardening of skin 
  • Blisters or other growths on the skin, rashes or redness
  • Repeated skin infections
  • Flu-like symptoms such as fever and fatigue
  • Normally wrinkly skin looks plumper or smoother (this may be especially visible around the knuckles)
Lymphedema usually develops gradually and many people notice subtle sensations that may come and go before they see visible swelling. Knowing the signs can help you get effective treatment faster. Keep in mind that your cancer treatment team may not be experts at handling  lymphedema. If you think you may be developing it, find a health care practitioner who specializes in this condition. 

Managing lymphedema

If you develop lymphedema, work with a specialist to develop a treatment plan. This can help you manage symptoms effectively and keep your quality of life high. 
There are several methods for managing lymphedema, usually used in combination. The most important ones are:

Compression garments

Compression garments apply light pressure to the body. They are typically designed to apply greater pressure in the area where lymph fluid has gathered to help move fluid away from that area. Compression sleeves are used on the arms and other compression garments are used for the torso and hands. Compression garments need to fit properly in order to work. A garment that’s poorly fitted or used incorrectly can make lymphedema worse, so it’s important to work with a lymphedema therapist to get this right!
Compression garments are usually used for more mild lymphedema symptoms, to keep lymphedema from getting worse, or to maintain results following more aggressive treatment to reduce swelling. 

Bandaging

Bandaging is another method for reducing swelling and is typically used when lymphedema symptoms are more severe. A trained lymphedema therapist will apply bandages for you when you begin treatment and will then teach you to apply them yourself. You may need to wear bandages all the time (except when bathing or during therapy sessions) until your symptoms are better controlled. This process may require daily bandage changes and wearing the bandages for a month or so until swelling is reduced. 
Bandages apply greater pressure than compression garments and help move lymph fluid out of areas with significant swelling. If there are smaller areas of your body with more severe swelling or where the skin has hardened or scarred (called fibrosis), foam pads or “chip bags” may be applied under the bandages to help alleviate symptoms in those areas. “Chip bags” contain pieces of foam that massage your body as you move to soften hardened tissue and break up areas of fibrosis. Foam pads (sometimes called Schneider pads) add an extra layer of consistent pressure to spots with greater swelling. 
When bandaging is done correctly it can help to significantly reduce the symptoms of lymphedema. But just like compression garments, improperly used bandages can make your symptoms worse. It’s important to see a trained lymphedema therapist to begin treatment. The therapist will teach you how to apply bandages correctly and will monitor your condition.
Often bandaging can be done for a month or so until swelling has been reduced, after which compression garments can be used to keep your lymphedema under control. Sometimes another period of bandaging might be needed if your symptoms flare up again. 

Manual lymphatic drainage

Manual lymphatic drainage is a specialized form of manual (hands-on) therapy somewhat like massage that can help to move lymph fluid out of your tissues and into the lymph vessels, reducing swelling. The touch a therapist applies in manual lymphatic drainage is much gentler than a typical massage. A therapist may teach you the technique so you can do it yourself. 

Weight control

Carrying excess weight can make lymphedema more likely and exacerbate symptoms, so maintaining a healthy weight is an important part of managing lymphedema. If you’re struggling with your weight, ask your care team to connect you with a dietitian, or ask for guidance on developing a healthy eating plan. Exercise can be challenging during and after cancer treatment, so it’s important to respect your body’s limitations and need for rest. Go slowly, start with gentle exercise and get your doctor’s advice as you develop an exercise routine that supports a healthy weight and your recovery.
If you see a lymphedema therapist (you can find one here), they may have you perform specific gentle exercises to encourage the movement of lymph fluid in affected parts of your body, as well. 
 

Protecting against injury and infection

Infection can trigger lymphedema, and people who already have lymphedema face higher infection risks. This is because lymph nodes help launch the body’s immune response and fight infection. In addition, lymph fluid that isn’t flowing efficiently can become a fertile ground for infections, since it collects bacteria and other foreign substances. 
People with lymphedema or who are at heightened risk for lymphedema should be aware of any signs of infection and get treated right away. In particular, if you develop a rash, swelling or bubbling on the skin that’s warm and tender, this could be a sign of cellulitis - an infection that can quickly become serious and even life-threatening. You should get treatment right away if you notice possible signs of cellulitis. 
Again, it’s best to protect yourself from infection by avoiding any type of skin break. Prevent cuts, scratches, and scrapes by wearing gloves and long sleeved clothing, especially when doing activities where these minor injuries are common, like cleaning or gardening. Use lotion to keep skin from cracking, including around your cuticles. Protect parts of your body with lymphedema symptoms from heat or cold, since you can have reduced sensitivity to temperature and inadvertently cause injury from the exposure. Take special precautions when shaving. If you do get a cut, clean the area with soap and water and use antibiotic ointment to protect against infection. 

Other treatments and self-care for lymphedema

The above strategies aren’t the only treatments for lymphedema, but they are the most commonly used and time-tested ones. Often several of these techniques are used together during the same period or at different times in the course of treatment for lymphedema. 
Other treatment options include laser therapy, which is a relatively new approach, pneumatic pumps, which are an older method for moving lymph fluid and reducing swelling, and in severe cases and as a last resort, surgery. Your team will also show you self-care methods such as elevating the affected body part, cleaning and moisturizing the area, checking for signs of infection, and avoiding tight-fitting clothing or elastic bands around affected areas.
If your lymphedema is advanced, you might undergo an intense period of treatment called Complete Decongestive Therapy, which combines bandaging, exercise, and manual lymphatic drainage for an initial period of several weeks to two months to reduce swelling and minimize symptoms as much as possible. After that, a maintenance period will help you manage your weight, practice self-care techniques (which may include bandaging or switching to compression garments), and recognize signs of worsening symptoms so you can get treatment quickly in case of a flare-up. 

The content on this website is intended to provide the best possible information for you, but should not be considered—or used as a substitute for—medical advice. If you have questions about your diagnosis or treatment, please contact your health care provider(s). For questions or comments about this content, please email us at support@jasperhealth.com.