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Lymphedema

Lymphedema is a condition that some survivors may experience after treatment. Lymphedema causes swelling in the arms and legs. Knowing the causes of lymphedema can help you manage your symptoms.

Detailed Information

Lymphedema: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources

Lymphedema is a condition in which lymph fluid does not flow freely in the body. Some cancer survivors may experience lymphedema as a side effect of the surgical or radiation treatment they needed for their type of cancer. If lymphedema is identified early, treatment may prevent the progression of the condition. This can help to improve the quality of life after cancer.

How does lymphedema affect some survivors?

Lymphedema affects the lymphatic system. The lymphatic tissues and organs produce, store and carry the white blood cells that help fight infections and other diseases. There is an accumulation of protein-rich fluid in the interstitial spaces of an affected body part due to a blockage or malfunction in the lymphatic system. It is often associated with swelling that you can see and feel. This occurs most frequently in the arms and legs.

The swelling of arms, legs, trunk, or other body part 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. There are two types of lymphedema: primary and secondary.

Sometimes radiation damages lymph nodes and these changes can contribute to lymphedema. In addition, surgeries that remove lymph nodes are sometimes a necessary part of treating cancer. The side effects from some treatments can cause lymphedema.

Lymphedema can occur during treatment, immediately following treatment, or years after cancer treatment ends. Because there is not an exact risk time period, it is important to go for regular check-ups and look for changes in your body that might be symptoms. Whether or not you will get lymphedema really depends on the type of treatment you had, other predisposing factors, and your body's response to treatment.

If you do experience lymphedema, it does not mean that your health care team did not do a good job. The primary goal of your health care team is to treat your cancer. They then work to manage any aftereffects you might experience. It is important to be aware of the risks of lymphedema and other aftereffects of treatment. Watch for symptoms to increase your chances of early detection. This will enable you to inform your doctor and get treated as early as possible.

What are some symptoms of lymphedema?

Symptoms and swelling may appear for a short time, disappear without treatment, and then return. If you notice any symptoms, write down when they happened, what you were doing and if anything made it better.

Sometimes, when the swelling comes and goes often, it might be the beginning of chronic lymphedema. Early detection and treatment are very important. Once swelling becomes chronic, it is only manageable and not reversible. You are likely to be the first to notice symptoms of lymphedema. Check your body regularly for changes.

Lymphedema can affect survivors physically and emotionally. You may have concerns about your appearance, increased risk of infections, functional limitations and pain. Talk with your doctor about any concerns you have.

Common symptoms of lymphedema include:

Swelling of the arms, legs or trunk on the affected side of the body
Feeling of heaviness or discomfort in an arm or leg
Loss of flexibility in the hand, wrist, or ankle
Difficulty fitting into your clothes
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 (this may be felt even before there is noticeable swelling)
Pitting of the skin

Why does cancer and treatment sometimes cause lymphedema?

Even though other non-cancer conditions can cause lymphedema, it often happens after a treatment that changes your lymph nodes and lymphatic vessels. Lymphedema does not happen because treatment was not done correctly.

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 be able to move the fluid where it needs to go in your body.

An infection can also cause damage to the lymphatic system. It is very important to protect the body from infection in order for the lymphatics to work as well as they can.

Certain types of treatment may bring a greater risk for lymphedema. Talk with your health care team about treatments whether there is a risk for you. Ask what can be done to try to prevent this from happening.

Cancer-related procedures that may bring increased risks of developing lymphedema include:

Biopsy: A biopsy is when your tumor and surrounding tissue 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. This can be 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, colon or other type of cancer. Lymph vessels may also be cut during the course of surgery to remove tumors and surrounding tissue. This puts survivors at risk of developing lymphedema.
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.

Lymphedema can be managed with effective treatment, but there is no cure. However, it is believed that an early diagnosis and treatment of any temporary swelling can help prevent chronic lymphedema from happening.

Who might be at most risk for lymphedema?

People who have had the following surgical procedures may be at greater risk for developing lymphedema:

Biopsy
Lumpectomy
Simple mastectomy
Modified radical mastectomy with node dissection in the armpit
Surgical removal of lymph nodes
Traumatic injury
Radiation
Infection
Impaired lymphatic structure and function
Surgery or biopsies that sample lymph nodes or disrupt lymph flow in the groin or axilla (armpit).
Individual predisposition and basic conditioning factors yet to be fully understood

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

Breast cancer
Melanoma
Prostate cancer
Ovarian cancer and other gynecological cancers
Head and neck cancers
Colorectal cancer
Cancers involving lymph node sampling or dissection
Radiation to the lymph nodes

Other factors can also put a survivor at risk for lymphedema. These include being seriously overweight, having diabetes and taking certain medications. However, there has not yet been a great deal of research about how or whether these factors increase your risk for lymphedema. Discuss these factors with your health care team, if they apply to you.

What can be done to minimize risks for developing lymphedema?

To decrease your risk of developing lymphedema, talk with your health care team about treatment alternatives. Ask about strategies to minimize your risk and learn about treatment therapy.

Review the following strategies and suggestions with your health care team:

Ways to Decrease Risks of Developing Lymphedema	Suggestions
Watch for even a slight increase in size or swelling and other symptoms of the arm, hand, fingers, chest wall, trunk or legs.	Contact your health care team as soon as you notice any one of these symptoms.
Avoid having injections, finger sticks or blood drawn from the arm that is at risk for lymphedema.	If there is no other option, the injection or stick site needs to be carefully prepared with an antiseptic and covered with a protective bandage afterwards. You should tell the person injecting your arm or drawing blood that you are at risk for lymphedema.
Do not have blood pressure checked from the at-risk arm.	After cancer treatment involving the breast or the armpit, use the arm on the unaffected side for blood pressure checks. When procedures have involved both sides of the body, use the thigh for blood pressures checks if possible.
Avoid Infection.	Keep the skin of at-risk arms or legs very clean and healthy. Use moisturizing cream or lotion (such as Eucerin, Lymphoderm, Curel) after bathing. Dry gently but thoroughly.
Make sure the at-risk arm or leg gets proper circulation.	You can do this by occasionally raising the at-risk or affected arm or leg above the level of your heart and exercising regularly, at an appropriate level of exertion.
Avoid vigorous, repetitive movements against resistance with the at-risk or affected arm or leg.	Consult your health care provider or Lymphedema therapist regarding an individualized program of gradual conditioning to resume or increase physical activity. Use the other limb if possible or ask for help. Avoid activities such as scrubbing, pushing, and pulling.
Avoid heavy lifting or putting excessive pressure on the affected limb.	Limit lifting to less than 15 lbs
Avoid constriction of existing lymphatic vessels.	Women using breast prostheses after mastectomy should select a lightweight prosthetic. Use only loose-fitting jewelry around at-risk or affected fingers or arm(s). Do not use underwire bras or bras that decrease circulation to the shoulder, trunk, or breast and do not use over-the-shoulder straps on the at-risk or affected side. Never carry heavy handbags or bags with at-risk or affected arm.
Avoid extreme temperature changes on the at-risk or affected arm or leg.	Closely monitor temperature changes when bathing or washing dishes. Avoid saunas and hot tubs to keep affected limbs out of extreme temperatures.
Minimize chances of any injury: bruising, cuts, sunburn or other burns, sports injuries, insect bites, animal bites or scratches to at risk or affected arm(s) or leg(s).	Wear protective clothing and sunscreen. Shave with an electric razor rather than a safety razor. Wear gloves while doing housework, gardening, or any type of work that could result in even a minor injury. Wear shoes or house slippers to protect feet. If you are getting your nails done, tell the manicurist or pedicurist of special needs and precautions. If injuries do occur, watch for signs of infection including swelling, redness, pain, warmth, and fever.
Establish a safe exercise program.	Consult with a member of your health care team before starting an exercise program. Try not to use an at-risk arm or leg too much. If there is swelling, discomfort, aching or pain, lie down and elevate the limb. Activities such as walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga may be included in your individualized exercise programs with appropriate conditioning.
Take special precautions when traveling by air.	Wear a well-fitted compression sleeve or stocking. Additional bandages may be required on long flights. Increase fluid intake while in the air. Ask for guidance for the at-risk limb from a lymphedema specialist before travel. Avoid lifting heavy baggage without assistance.

What treatments or therapy are available for lymphedema?

Lymphedema treatments or therapy, such as those in the following table, are provided by a therapist who has specialized training in lymphedema management. This may be a physical therapist, occupational therapist, registered nurse, or massage therapist. Ask your doctor what would be best for your situation.

Lymphedema Treatments	What Treatment May Involve
Compression Bandaging and Garments	A well-fitted daytime compression garment reduces day-time swelling. An overnight garment and/or compression bandaging reduces night-time swelling. Specialized multilayer bandaging is routinely used around the clock during intensive treatment to reduce limb volume. Overnight bandaging may be continued as part of self-management to control swelling.
Exercise	Exercise under the guidance of the therapist and while the limb is under compression is carried out daily to help reduce limb swelling. Over-exertion is avoided to prevent fatigue and further swelling.
Skin Care	The skin is moisturized and protected from breakdown to prevent infection, which further increases limb swelling and can lead to life-threatening systemic infection.
Healthy Diet	Maintaining a healthy weight with a well-balanced diet. Maintain hydration. No dietary protein restriction is recommended for lymphedema even though lymph is a protein-rich fluid.
Manual Lymphatic Drainage	Specialized manual techniques are applied by the therapist trained in lymphatic therapy and taught to the individual with lymphedema for self-care treatment. This gentle "massage" technique stimulates the lymphatic system, reducing swelling and other symptoms.

This document was produced in collaboration with:

Jane M. Armer, RN, PhD
Professor, Sinclair School of Nursing
Director, Nursing Research, Ellis Fischel Cancer Center
University of Missouri

Works Cited

International Society of Lymphology. "The diagnosis and treatment of peripheral lymphedema: Consensus document of the International Society of Lymphology." Lymphology 36 (2003): 84-91.

Ridner SH. "Breast cancer lymphedema: pathophysiology and risk reduction guidelines." Oncology Nursing Forum 29(9) (Oct. 2002): 1285-93.

National Lymphedema Network Position Papers online: http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Lymphedema Risk Reduction Practices – National Lymphedema Network http://www.lymphnet.org/pdfDocs/nlnriskreduction.pdf

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Lymphedema: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.

Discuss treatment alternatives that may reduce the risk for lymphedema with your health care team.
Before any major procedure (such as a biopsy, an operation or radiation), talk with your health care team about the potential risks for lymphedema. Ask about ways to reduce risks. With proper education and care, the chances of developing lymphedema can be lessened.
Talk with other survivors about how they manage their lymphedema.
Share your concerns and feelings with people you trust. Talking with another person about your feelings and what is causing them can help you understand more clearly what you are feeling and help you find ways to manage your feelings.

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 a member of your health care team for suggestions. Most 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.
- Visit LIVESTRONG SurvivorCare at www.livestrong.org/survivorcare, or call 1-866-235-7205 for information on support groups.

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Lymphedema: Additional Resources

The resources listed below provide more detailed information and support services to help you with lymphedema. Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG Care Plan
www.livestrongcareplan.org

This free online tool was created to help you develop a personalized plan for post-treatment care. It can help you work with your oncologist and primary health care provider to address medical, emotional and social challenges that may arise after cancer treatment is completed. By answering some questions related to your cancer treatment, you will receive information about your follow-up care. This information includes symptoms to watch for in the future and steps you can take to stay healthy.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

Email: Send email through the LIVESTRONG website.
Phone: 1-866-673-7205
1-866-927-7205 (Spanish)
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

Email: Submit questions in English or Spanish from the "Contact Us" page.
Phone: 1-800-227-2345
TTY for deaf or hard of hearing callers: 1-866-228-4327

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

National Lymphedema Network (NLN)
www.lymphnet.org

Email: nln@lymphnet.org
Phone: To listen to recorded information, call 1-800-541-3259.
To speak to a representative, call 510-208-3200, Monday-Friday, 9:00 a.m. to 5:00 p.m. (PST).

The National Lymphedema Network (NLN) is an internationally recognized non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. The NLN is a driving force behind the movement in the U.S. to standardize quality treatment for lymphedema patients nationwide. In addition, the NLN supports research into the causes and possible alternative treatments for this often incapacitating, long-neglected condition.

U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov

Online: Online assistance is available in English or Spanish through the LiveHelp instant messaging system. This service is available Monday-Friday, 9:00 a.m. to 11:00 p.m. (EST)
Email: Send an email through the "Need Help?" section of the website
Phone: 1-800-422-6237
TTY for deaf and hard of hearing callers: 1-800-332-8615
Information specialists answer calls Monday-Friday, 9:00 a.m. to 4:30 p.m. local time.

The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials.

The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.

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