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2003 NYS Lymphedema
Awareness Day
2002: 1st NYS
Lymphedema Awareness Day
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Lymphedema Risk Reduction and Treatment
Lymphedema Information and Risk Reduction
- Lymphedema following breast cancer surgery or treatment is caused by an accumulation of protein-rich lymphatic fluids that cannot be properly transported through damaged or removed lymph vessels (due to trauma, injury, radiation therapy, or lymph node biopsy).
- It can occur: after lumpectomy or mastectomy with axillary lymph node dissection; occasionally after sentinel node biopsy; after radiation therapy; or unpredictably and spontaneously, many years after surgery or treatments.
- Lymphedema results in chronic or sometimes permanent, abnormal swelling of the arm/hand, often accompanied by tightness, pain, or heaviness around the arm. The condition can often be controlled with appropriate treatments and diligent maintenance.
- The best prevention is prevention itself: Immediately report even the mildest symptom (redness, swelling, rash, pain) to your breast surgeon or oncologist.
- If symptoms do not subside IMMEDIATELY, obtain a prescription for CDT or Complete (Complex) Decongestive Therapy (Physiotherapy), a specialized form of physical or occupational therapy performed at a certified lymphedema clinic only, by CDT-licensed, experienced lymphedema therapists with a minimum of 120 hours of basic study.
- Even in mild or controlled cases, there is a possibility of infection, e.g., cellulitis, which must be treated immediately with oral (e.g. Keflex) or intravenous antibiotics, in order to prevent further systemic infection.
- Ask your physician for a prescription (e.g. Keflex), fill it, and always keep a full bottle on hand, particularly when traveling.
- Contact your physician or go to the Emergency Room immediately in the event of fever/redness/pain. You may require intravenous antibiotics to prevent a serious systemic infection.
- Recommendations for Risk Reduction: (A) Keep the area very clean. --- Anything making contact with the area, e.g., bandages, towels, or clothing should be meticulously clean. --- Remove underarm hair only by shaving with an electric razor. --- Wash and moisturize the hands often. --- Moisturize the arms and hands regularly; avoid products containing alcohol, petroleum, fragrances, dyes, aluminum, talc, lanolin, and mineral oil. --- Use only roll-on or stick deodorant. --- Keep the arm and hand dry. --- Wear protective gloves when using cleaning products. --- Wear heavy gloves when performing indoor or outdoor chores, e.g., gardening, painting, heavy cleaning. --- (B) Wear a supportive bra with comfortable, non-irritating fabric and smooth seams. --- Do not wear constricting clothing or tight jewelry on the affected arm or hand. --- Do not exhaust the arm. --- Avoid strenuous pushing, pulling, lifting, or repetitive motions. --- Permanently avoid wearing shoulder bags. --- Avoid wearing heavy backpacks. --- Wear a customized compression sleeve and glove or hand-to-shoulder compression bandages when exercising. --- Rest and elevate the arm if it aches or pulls during exercise. --- Wear a customized compression sleeve and glove or hand-to-shoulder compression bandages when flying and while traveling in mountainous or below-sea-level areas. --- (C) Avoid unusual or sudden temperature changes and exposure to very hot or cold weather, hot tubs, saunas, steam rooms, or very hot or cold showers, baths, pools, lakes, etc. --- Avoid prolonged sun exposure --- Avoid lengthy exposure to humidity and high temperatures. --- (D) ALWAYS avoid any blood tests, injections, vein punctures, or blood pressure testing on affected arm. --- Do not cut, bite, or peel cuticles. --- Try to cut fingernails very carefully. --- Bring your own sterilized tools and nail polish when getting manicures or pedicures. --- (E) Avoid any and all injuries to the hand or arm, e.g., falling, banging the arm or hand, blows or pressure to the arm or hand, cuts, paper cuts, bruises, burns, scratches, insect bites, insect stings, rashes, scrapes, nicks. --- Do not allow anyone to apply any pressure to your arm or hand (reflexology) or to perform any massage or acupressure treatments unless the technique is extremely light and gentle; the surface massage strokes must be directed inward toward the body, in a STRAIGHT line from the hand to the shoulder. --- (F) Maintain ideal body weight. --- Weight loss will often improve the degree of swelling. --- Eliminate dietary fats, sodium, salt-containing foods and beverages, which can increase swelling or prevent a reduction in swelling. --- Drink water regularly to flush fluids through the body's system. --- (G) Avoid or immediately attend to all infections or inflammations, either internal or external. --- For extra prevention: Avoid stress, fatigue, overwork, colds, and exposure to people with infections, colds, and flu.
Lymphedema Treatment
- Seek treatment at the first sign of symptoms. Do not wait. Be your own advocate and insist upon immediate evaluation by a lymphedema specialist.
- Contact professional organizations and lymphedema websites to locate licensed therapists and certified lymphedema clinics.
- Refer to our LINKS page where we have linked reputable websites, e.g., the National Lymphedema Network (NLN), Circle of Hope, and Lymphology Association of North America (LANA) for information and referrals.
- Treatments should be performed exclusively by CDT-certified, experienced Occupational or Physical Therapists, nurses, or licensed, CDT-certified Manual Lymph Drainage massage therapists. They must have a minimum of 120 CDT certification hours (usually a 2-week course.) --- The therapy should be performed at certified, specialized lymphedema clinics or by private, home-care therapists. Request validation of clinic's certification and therapist's certification and license.
- The treatment, called Complete or Complex Decongestive Therapy (CDT), includes the following: Manual Lymph Drainage massage (MLD) to stimulate movement of fluids to healthy lymphatic vessels/Application of compression bandages immediately following MLD massage/Constant compression with the bandages or a customized sleeve and glove to increase drainage, reduce and control swelling, and prevent fluid from returning to the affected area/Exercises to reduce atrophy and keep the lymph fluids moving/Skin care/Patient education.
- Complete the entire course of prescribed treatments. Schedule a follow-up treatment every few months and continue indefinitely with meticulous prevention and self-care to maintain results and to prevent relapse.
- Traditional lymphedema pumps are merely temporary, can be ultimately ineffective, and can often delay healing progress if not accompanied by the other CDT-modalities listed above.
- Research complementary medicine and nutritional resources to fortify your healing. --- Join a support group and seek professional counseling. --- Use mental imagery techniques to help relieve discomfort and swelling.
- Before attempting to make any appointments, first discuss specific details of your treatments with your medical insurance company in order to obtain supportive prescriptions/letters of medical necessity from your physicians.
- There are many clinical examiners and doctors at insurance companies who are making decisions about your benefits, but who lack the knowledgeable about lymphedema and CDT treatments to be making those decisions. Moreover, they often do not know the difference between general physical therapists/therapy centers and CDT practitioners/lymphedema clinics.
- Obtain verbal and written insurance authorization and approval in advance. Keep a log of names, dates, time, and phone numbers of insurance representatives who are working on your case in order to successfully appeal a decision in the future.
- Many CDT practitioners are Occupational Therapists and your insurance company will try to deny benefits if you don't have O.T. coverage. BUT many insurance companies will be willing to permit you to utilize some of your P.T. benefits in exchange for O.T. benefits. Request that alternative option.
- Most patients are limited to a specific number of therapy visits per year; pressure your insurance company to provide sufficient visits to bring you optimal healing and function. This will require detailed letters of necessity from your physicians and therapists.
- CDT- treatment requires Monday - Friday (1 hour) daily visits for two - four consecutive weeks (minimum), depending upon the severity of the condition and the response rate of the patient. The full course of treatment is absolutely necessary.
- Do not accept denial of CDT benefits under any circumstances. Breast Cancer related lymphedema treatments and garments should be covered under the "Women's Health and Wellness Act" although insurance companies will attempt to ignore those facts.
- When you encounter insurance problems, immediately seek political intervention. Contact your physicians, nurses, therapists, social workers, state senators, or assemblypersons to help you obtain approval of benefits. Do not wait. Time is of the essence. (The sooner the condition is treated, the better the possibility of healing.)
- Don't give up!
Please refer to our RESOURCES page for additional information.
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