Lymphedema: Detailed Information

Some cancer survivors may experience lymphedema as a side effect of surgeries or the type of treatment they needed for their cancer. Lymphedema is a condition that affects your lymphatic system, which is made up of tissues and organs in your body. These tissues and organs produce, store and carry the white blood cells that help fight infections and other diseases.

Lymphedema - officially called “secondary lymphedema” – is swelling of arms, legs or trunk that occurs from the build-up of lymph fluid. Lymph fluid is the clear fluid that travels through the lymphatic system and carries cells that help fight infections and other diseases. Lymphedema stops lymph fluid from flowing freely in your body and often causes swelling in your body that you can see and feel.

Lymphedema is a very treatable condition. If you experience lymphedema it isn’t because your health care team didn’t do a good job of treating your cancer. Sometimes radiation damages lymph nodes and lymphedema can’t be avoided. Surgeries that remove your lymph nodes are also sometimes a necessary part of treating your cancer. This is unfortunate, but your health care team’s primary goal was to treat your cancer. Now, they can work with you to prevent or manage any aftereffects you might experience.

While it may seem frustrating at times to have to worry about health conditions after you have survived something like cancer, it’s important to be aware of your risks of aftereffects like lymphedema and watch for symptoms to increase your chances of early detection.

Who might be at risk for lymphedema?

People who have had the following procedures are at risk for developing lymphedema:

• Biopsy
• Lumpectomy
• Simple mastectomy
• Modified radical mastectomy with node dissection in the armpit
• Surgery or biopsies that sample lymph nodes or disrupt lymph flow in the groin or axilla (armpit); these may include surgeries for prostate and gynecological cancers and melanoma
• Sentinel lymph node mapping procedures (use of dyes and radioactive substances to identify lymph nodes that contain tumor cells)

Survivors of the following cancer types are at risk for developing lymphedema:

• Breast cancer
• Melanoma
• Prostate cancer
• Ovarian cancer
• Head and neck cancers
• Cancers involving lymph node dissection and radiation to the lymph nodes

Other factors such as being seriously overweight, having diabetes and taking certain medications such as steroids may put a survivor at risk for lymphedema. However there hasn’t been a lot of research done about whether or not these factors increase your risk for lymphedema. You might want to discuss these factors with your health care team if any apply to you.

What are some symptoms of lymphedema?

Some of the symptoms of lymphedema are:

• Noticeable swelling of the arms, legs or trunk
• Feeling of fullness or discomfort in an arm or leg
• Not being as flexible in the hand, wrist or ankle
• Sudden and extreme difficulty fitting into your clothes
• Sudden and extreme tightness of rings, watch or bracelet
• Infections that won’t go away or keep coming back in the same area
• Feeling of tightness in the skin (which may be felt even before there is noticeable swelling)

Symptoms and swelling may appear for a short time, disappear without treatment and then may return permanently. When you notice any symptoms, write down when they happened, what you were doing and what, if anything, made it better. Sometimes when the swelling comes and goes often, it might be the beginning of lymphedema. Early detection and treatment are very important. Once swelling becomes constant, it is not reversible, but only manageable. You may be the first to notice your symptoms of lymphedema, so look over your body regularly for changes.

Why does cancer or its treatment sometimes cause lymphedema?

Even though other non-cancer conditions can cause lymphedema, it often happens after a treatment that changes your lymph nodes. Remember, lymphedema does not happen because your treatment wasn’t done correctly. However, you might want to understand why certain treatments sometimes cause lymphedema.

Cancer-related procedures that increase the chances of developing lymphedema include:

• Biopsy: A biopsy is when tissue around your tumor is removed for testing. This may damage lymphatic pathways and may allow bacteria to enter the body through the break in the skin. Damage to the lymph pathway and infection both cause increased congestion, a first step in the development of lymphedema.

• Surgery: You may have lymph nodes removed during surgeries for melanoma or breast, gynecological, head and neck, prostate, testicular, bladder or colon cancer. This puts survivors at risk of developing lymphedema.

• Lymph node mapping: Lymph node mapping involves the injection of a dye to trace the flow of lymphatic fluid from the tumor to the nearest lymph nodes. This may cause damage to the lymphatic system.

• Radiation therapy: Radiation kills cancer cells that might be left behind after surgery. Radiation therapy often causes fibrosis or thickening of the tissues in the area of your body that received radiation. The thickening of the tissue may make it harder for lymph fluid to flow from your legs and arms into the middle of your body.

When could lymphedema happen?

Lymphedema can occur during treatment or years after your treatment ends. Because there isn’t an exact time period where you might be at risk, it’s important to go for check-ups and look for changes in your body that might be symptoms of lymphedema. Whether or not you will get lymphedema or when really depends on the type of cancer you had, the type of treatment you received and how your body handled it all.

Is there a cure for lymphedema?

There is no cure for lymphedema, but you can manage it with quick and effective treatment. Getting it diagnosed early and treating any temporary swelling you might experience can prevent chronic (permanent) lymphedema from happening.

The lymphatic system can function at a higher level when your body needs it to do so, but only for a brief period of time. Once the lymphatic system fails to keep up with how much fluid your body needs it to pump, it may not do a good enough job of moving the fluid where it needs to go in your body. An infection can cause damage to the lymphatic system. It is very important to protect the lymph vessels in order for the lymphatics to work as well as they can.

What can be done to minimize a survivor’s risks for developing lymphedema?

Below is a brief list. For more information, see Suggestions.

• Discuss treatment alternatives that may reduce your risk for lymphedema with your health care team
• Talk to other survivors about ways they manage their lymphedema
• Learn about strategies to minimize your risk for lymphedema
• Learn about lymphedema therapy

This document was produced in collaboration with:
Jane M. Armer, RN, PhD
Associate Professor, Sinclair School of Nursing
Director, Nursing Research, Ellis Fischel Cancer Center
University of Missouri-Columbia

Lymphedema: Suggestions

Discuss treatment alternatives that may reduce your risk for lymphedema with your health care team:

Before any major procedure - a biopsy, lymph node mapping or an operation - talk with your health care team about your potential risks for lymphedema and ways to reduce these risks. With proper education and care, you can decrease your chances of developing lymphedema.

Talk to other survivors about ways they manage their lymphedema:

Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about the emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.

Ways to find out more about support groups in your area:

• Ask your health care team for suggestions. Some cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
• Call a nearby cancer center or university hospital and ask about support groups.
• Call the American Cancer Society at 1-800-ACS-2345 (1-800-227-2345) and request a list of support groups and cancer centers in your area.
• Visit LIVESTRONG^TM SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.

Learn about strategies to minimize your risk for lymphedema:

Review these suggestions carefully with a member of your health care team.

Learn about lymphedema therapy:

Lymphedema therapy is provided by a therapist (physical therapist, occupational therapist, registered nurse, or massage therapist) who has specialized training in lymphedema management.