Coping with lymphedema


Lymphedema is an accumulation of lymphatic fluids that produces an abnormal swelling in the body. This condition can appear in some people who have been through cancer treatment. When lymphatic drainage is blocked, protein-rich fluid gradually builds up and stagnates in the soft tissues where bacterial growth can develop, possibly leading to infection.

Some people with cancer have a higher risk of developing lymphedema than others. Those who are obese, advancing in age or who have complications after surgery are at a higher risk.

Patients at risk of developing lymphedema

  • People with breast cancer who have had a simple mastectomy, lumpectomy, radical modified mastectomy along with the underarm lymph node dissection, sentinel node examination and often those who have had radiation.
  • People with malignant melanoma of the arms or legs who have had radiation or lymph node dissection.
  • Men with prostate cancer who have had surgery or radiation of the total pelvic area.
  • Women with advanced gynecological cancers who have had surgery with lymph node removal or radiation treatments.
  • Patients with advanced ovarian, testicular, colorectal, pancreatic or liver cancer.

To prevent lymphedema, carefully observe changes in your body and learn how to plan the personal hygiene that your doctor recommends after surgery and/or radiation treatment. You should understand the risks of developing lymphedema and the importance of following a personal caution for the rest of your life. Lymphedema can occur as late as 15 years or more after surgery.

Exercise is important and can prevent lymphedema. Lymphatic fluid drainage can improve with physical exercise. Your doctor or physical therapist can design an exercise program for you and let you know after surgery when to begin exercising.

Practical steps to prevent and control

  1. Pay attention to signs or symptoms of infection like pain, heat, swelling, a rash blistering, redness or a fever. Call the doctor immediately if you have one or more of these signs or symptoms.
  2. Do not allow injections or have blood drawn from the arm on the surgery side.
  3. Do not have your blood pressure taken on the surgery or affected side.
  4. Clean the skin of the limb or area of the body near the surgical site and apply lotion daily.
  5. If you have upper limb lymphedema, avoid lifting heavy things with your affected arm. Never carry heavy things or bags with shoulder straps.
  6. Avoid injury (blows, cuts, sunburns, burns, insect bites, cat scratches) and infections on the affected limb.
  7. Use gloves for gardening, in the kitchen and for any other work that could result in a minor injury.
  8. Keep the affected arm or leg elevated above heart level whenever possible. Avoid fast circular movements with arm (i.e. mixing).
  9. Use an electric razor.
  10. Take good care of your nails. Don't cut your cuticles.
  11. Avoid extreme temperature changes when bathing and hot or cold extremes from ice packs or heating pads.
  12. Be careful while sun tanning. Always use a sunscreen of SPF 15 or greater.
  13. Don't use tight jewelry or elastic bands around the affected fingers or arms.
  14. Maintain your ideal weight with a balanced diet, rich in protein and low in salt.

Treatment

Lymphedema treatment depends on its cause. If it's from an infection, your doctor may prescribe an antibiotic.

If lymphedema is not due to an infection, a compression system can be used on the arm or leg to reduce swelling. Mechanical compression sleeves or stockings can help. Manual lymphatic drainage (MLD) can be applied by a trained therapist. Speak to your nurse practitioner or physician about a referral. Resources are also listed on the next page.

If in spite of manual lymphatic drainage treatments the lymphedema persists, a special pump can be used at home.

Many insurance plans now cover diagnostic tests and treatment for lymphedema. Compression garments prescribed by the doctor generally are covered by the majority of insurance companies. It is advisable to inquire. Remember that treatment and support can improve the quality of life for a person affected by lymphedema.

There are clinics offering another form of treatment called Complete Decongestive Physiotherapy (CDP). You should ask your doctor to find out where this treatment is available.

Psychosocial considerations

Lymphedema can cause body image changes, be painful and limit activity. If you are feeling depressed, embarrassed or are avoiding social situations, you should talk with your doctor about individual counseling or a group that can offer emotional and informative support. Many resources are listed below.

For more information

National Lymphedema Network
800-541-3259
http://lymphnet.org  

Information Services of the National Cancer Institute
800-4-CANCER Y-ME hotline: 800-221-2141
www.y-me.org  

Greater Boston Lymphedema Network
781-894-2309  

Brigham & Women's Hospital
617-732-5304  

Circle of Hope Lymphedema Foundation
203-758-6138
www.lymphedemacircleofhope.org 


 
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