For People With Lymphedema

Lymphedema that is related to cancer is most commonly caused by lymph node removal during surgery for cancer, or by the tumor itself which might block part of the lymph system. Increased white blood cells due to leukemia or an infection can also restrict lymph flow and cause lymphedema.

Acute or temporary lymphedema

Lymphedema can start soon after surgery for cancer. This can be called acute or temporary (or short-termlymphedema. It usually starts within days, weeks, or a few months (up to a year) after surgery, is usually mild, and goes away on its own or with some mild treatments

Even though this type of lymphedema usually goes away on its own over time, you should tell your doctor about it right away. The swollen area may look red and feel hot, which could be a sign of a blood clot, infection, or other problem that needs to be checked and treated.

If there are no other problems causing the swelling, temporary lymphedema might be treated by raising the arm or leg, doing light exercises, and possibly taking medicines prescribed by your doctor to help reduce the swelling (also called inflammation).

Chronic lymphedema

This form of lymphedema develops over time. It may show up a year or more after cancer treatment. The swelling can range from mild to severe. The lymph fluid that collects in the skin and underlying tissues can be very uncomfortable. It can keep nutrients from reaching the cells, interfere with wound healing, and lead to infections.

Lymphedema can be a long-term problem, but there are ways to manage it. The key is to know what to look for, and then to get help right away when you first notice signs and symptoms. Lymphedema is easier to treat and more likely to respond to treatment if it’s recognized and treated early.

Treatment of lymphedema

When you have lymphedema, there are treatments to help reduce the swelling, keep it from getting worse, and decrease the risk of infection. Treatment is prescribed by your doctor and you should talk to and be monitored by a certified lymphedema therapist (CLT). 

A certified lymphedema therapist can help you with skin care, massage, special bandaging, exercises, and fitting for a compression garment. This treatment is called complete decongestive therapy, or CDT. Manual lymphatic drainage, or MLD, is the type of massage used as part of CDT to decrease lymphedema.

Daily CDT is used to reduce fluid volume as much as possible. (This may take a few weeks.) When the lymphedema is controlled as much as possible, a compression garment is used.

Although most insurance companies will pay for lymphedema treatment, some don’t cover the cost of compression garments and dressings. Check with your health insurance company to see what's covered. 

What the patient can do

  • Avoid over-using your affected arm.
  • Look closely at your body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. Let your doctor or nurse know if you notice any of the signs listed above.
  • Practice good skin care. When you have lymphedema, your risk of infection is higher. Keep your skin clean and dry and use moisturizers regularly to keep your skin from cracking. Also, protect your body from the sun. Use a broad spectrum sunscreen that is labeled SPF of at least 30 and try to stay out of the sun between 10 a.m. and 4 p.m., when the ultraviolet (UV) rays are strongest.
  • Ask to be referred to a certified lymphedema therapist (CLT). Be sure to check your health insurance to make sure lymphedema screening and therapy is covered.
  • Be sure compression garments fit well and are worn properly. Do not use a poorly fitting compression garment under any circumstances. This may make lymphedema worse.
  • If your arm starts to ache, lie down and raise it above the level of your heart.
  • Regular exercise is a key part of lymphedema management, but try not to over-tire your shoulder and arm.
  • It helps to talk to people who understand what you’re going through. Find support groups in your area, call us at 800-227-2345 or go to National Lymphedema Network online at www.lymphnet.org.

What caregivers can do

  • Watch the skin area for early signs of infection, like pus coming from a cut or scrape, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call the health care team right away if you notice these symptoms.
  • Help make the home environment safe from possible falls to prevent skin injury or fractured bones.
  • If the patient has pets, keep pets’ claws trimmed to avoid scratching the patient's skin.
  • Avoid the patient being exposed to extreme temperatures. Ice packs or heating pads may damage skin tissue and increase fluid build-up, so talk to the doctor before using either of these.  

Call the health care team if the patient

Call your doctor, nurse, physical therapist, or lymphedema therapist if you notice any of the signs of lymphedema listed above or any of these changes:

  • Has any part of the affected area, such as an arm or a leg, feel hot, look red, or swell up suddenly. These could be signs of infection (cellulitis) or a blood clot, and you might need treatment right away.
  • Has a temperature not related to a cold or the flu, that's above what's considered normal for the patient or above a certain level as instructed by the cancer care team.
  • Has new pain with no known cause in the affected area.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

To find a certified lymphedema therapist contact:

Lymphology Association of North America (LANA)
www.clt-lana.org

National Lymphedema Network (NLN)
1-800-541-3259
www.lymphnet.org

Eyigör S, Cinar E, Caramat I, Unlu BK. Factors influencing response to lymphedema treatment in patients with breast cancer-related lymphedema. Support Care Cancer. 2015;23(9):2705-2710.

Ferguson CM, Swaroop MN, Horick N, et al. Impact of ipsilateral blood draws, injections, blood pressure measurements, and air travel on the risk of lymphedema for patients treated for breast cancer. J Clin Oncol. 2015;34(7):691-698.

Jackowski JA.  Lymphedema. In Brown CG, ed. A guide to oncology symptom management. 2nd ed. Pittsburgh, PA: Oncology Nursing Society; 2015: 449-467.

Mitra D, Catalano PJ, Cimbak N, et al. The risk of lymphedema after postoperative radiation therapy in endometrial cancer. J Gynecol Oncol. 2016 Jan;27(1):e4.

National Lymphedema Network. Position paper: Healthy habits for patients at risk for lymphedema. Accessed at https://lymphnet.org/position-papers on September 10, 2019.

National Lymphedema Network. Position paper: Screening and measurement for early detection of breast cancer related lymphedema. December 2013. Accessed at https://lymphnet.org/position-papers-related on September 10, 2019.

National Comprehensive Cancer Network (NCCN). Survivorship: Late effects/long-term psychosocial and physical problems. 2019. Version 2.2019. Accessed at https://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf on September 10, 2019.

Oncology Nursing Society (ONS). Symptom intervention: Lymphedema. Accessed at https://www.ons.org/pep/lymphedema on January 3, 2020. 

Shaitelman SF, Cromwell KD, Rasmussen, JC, et al. Recent progress in the treatment and prevention of cancer-related lymphedema. CA Cancer J Clin. 2015;65:55-81.

 

References

To find a certified lymphedema therapist contact:

Lymphology Association of North America (LANA)
www.clt-lana.org

National Lymphedema Network (NLN)
1-800-541-3259
www.lymphnet.org

Eyigör S, Cinar E, Caramat I, Unlu BK. Factors influencing response to lymphedema treatment in patients with breast cancer-related lymphedema. Support Care Cancer. 2015;23(9):2705-2710.

Ferguson CM, Swaroop MN, Horick N, et al. Impact of ipsilateral blood draws, injections, blood pressure measurements, and air travel on the risk of lymphedema for patients treated for breast cancer. J Clin Oncol. 2015;34(7):691-698.

Jackowski JA.  Lymphedema. In Brown CG, ed. A guide to oncology symptom management. 2nd ed. Pittsburgh, PA: Oncology Nursing Society; 2015: 449-467.

Mitra D, Catalano PJ, Cimbak N, et al. The risk of lymphedema after postoperative radiation therapy in endometrial cancer. J Gynecol Oncol. 2016 Jan;27(1):e4.

National Lymphedema Network. Position paper: Healthy habits for patients at risk for lymphedema. Accessed at https://lymphnet.org/position-papers on September 10, 2019.

National Lymphedema Network. Position paper: Screening and measurement for early detection of breast cancer related lymphedema. December 2013. Accessed at https://lymphnet.org/position-papers-related on September 10, 2019.

National Comprehensive Cancer Network (NCCN). Survivorship: Late effects/long-term psychosocial and physical problems. 2019. Version 2.2019. Accessed at https://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf on September 10, 2019.

Oncology Nursing Society (ONS). Symptom intervention: Lymphedema. Accessed at https://www.ons.org/pep/lymphedema on January 3, 2020. 

Shaitelman SF, Cromwell KD, Rasmussen, JC, et al. Recent progress in the treatment and prevention of cancer-related lymphedema. CA Cancer J Clin. 2015;65:55-81.

 

Last Medical Review: February 1, 2020 Last Revised: February 1, 2020

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