If you ask most people that are familiar with lymphedema the question, "Are you aware of secondary lymphedema," most would reply that "yes, it is where the arm swells after the lymph system has been damaged by breast cancer biopsy and treatment."
Even if they are aware that such a condition as secondary lyg lymphedema exists, their response might well be that it is a small group of afflicted men who have prostate cancer.
Thus shows how little awareness there is about this particular form of lymphedema. Even in the lymphedema world it is a poor step-child. However, if the membership of Lymphedema People and the posts in the online lymphedema support groups are an indication, this condition is increasing dramatically.
The reasons for this increase are multiple. They include:
1. increased survival rates of cancer
2. improved treatment of trauma injuries that previously would have been terminal
3. increase in antibiotics for infections and treatment for other conditions that previously might have resulted in death.
It is also important to note that secondary leg lymphedema does not necessarily start immediately after the injury/trauma. It may not start for years.
What is secondary leg lymphedema?
Secondary lymphedema is a condition where the lymphatic system has been damaged. The main job of this system is to move excess through and out of our bodies. When it becomes damaged or impaired, it is no longer able to accomplish this function and these fluids (lymph fluids) collect in the interstitial tissues of our legs. This causes leg swelling.
Another important function of the lymph system is to help our bodies fight infections. With lymphedema, this ability is also weakened and the patient becomes more susceptible to infections.
What causes secondary leg lymphedema?
Secondary leg lymphedema (also referred to as acquired lymphedema) is caused by or can develop as a results of:
1.) Surgeries involving the abdomen or legs where the lymph system has been damaged. This includes any intrusive surgery. Examples are vein stripping surgery for peripheral vascular disease hip replacement knee replaement insertion of bolts, screws and other devices in orthopaedic repair lipectomy
2.) Removal of lymph nodes for cancer biopsy. These cancers include, but are not limited to prostate cancer testicular cancer ovarian cancer uteran cancer vulva cancer bladder lymphoma - both hodgkins and non hodgkins melanoma colon Kaposi Sarcoma
3.) Radiation treatment of these cancers that scars the lymph system and lymph nodes
4. Some types of chemo therapy. For example, tamoxifen has been linked to secondary lymphedema and blood clots.
5.) Severe infections/sepsis. Generally referred to as lymphangitis, this is a serious life-threatening infection of the lymph system/nodes.
6.) Trauma injuries such as those experienced in an automobile accident that severly injures the leg and the lymph system.
7.) Burns - this even includes severe sunburn. We have a member that acquired secondary leg lymphedema from this.
8.) Bone breaks and fractures.
9.) Morbid obesity - the lymphatics are eventually crushed by the excessive weight. When that occurs, the damage is permanent and chronic secondary leg lymphedema begins.
What are some of the symptoms of secondary leg lymphedema?
These symptoms may include:
1.) Unexplained swelling of either part of or the entire leg. In early stage lymphedema, this swelling will actually do down during the night and/or periods of rest, causing the patient to think it is just a passing thing and ignore it.
2.) A feeling of heaviness or tightness in the leg
3.) Increaseing restriction on the range of motion for the leg.
4.) Unsual or unexplained aching or discomfort in the leg.
The preferred treatment today is decongestive therapy. The forms of therapy are complete decongestive therapy (CDT) or manual decongestive therapy (MDT), there are variances, but most involve these two type of treatment.
With these massage treatments, swelling is reduced and then the patient is fitted with a pre-measured custom pressure garment to keep the swelling down.
Manual Lymphatic Drainage (MLD): is a unique, therapeutic method of stimulating the movement of fluids in the tissues. The gentle, rhythmic, pumping, massage movements follow the direction of lymph flow and produce rapid results. It assistes the cutaneous lymphatics in picking up and removing not just fluids, but all the waste products, protein partical and debris from our system. It also is successful in breaking fibrosis and fibrotic areas of a lymphodemous limb.
This treatment was created and developed Danish therapists Dr. Emil Vodder and his wife, Estrid, in the 1930's and was introduced in Paris in 1936. They are also credit with creating a specialty of medicine called Lymphology.
First brought to North America in 1982, the school is located in Victoria, British Columbia, Canada. Before it was introduced the standard treatment course in North American was either a surgery called debulking or the use of compression machines wherein the limb was literally squeezed by pneumatic air pressure.
Comprehensive Decongestive Therapy (CDT): is used primarily in the treatment of lymphedema and venous insufficiency edema. It is a combination of MLD, bandaging exercises and skin care. CDT may also involve breathing exercises, compressive garments and dietary measures. A frequent indication for CDT is lymphedema caused by irradiation or surgery due to cancer. It can relieve edema, fibrosis and the accompanying pain and discomfort.
Also known as Complete Decongestive Physiotherapy (CDP), this treatment therapy was pionered in the United States by Dr. Robert Lerner.
Preventative Steps from the National Lymphedema Network
18 Preventive Steps For LOWER Extremities For the patient who is at risk of developing lymphedema, and for the patient who has developed lymphedema.
WHO IS AT RISK?
At risk is anyone who has had gynecological, melanoma, prostate or kidney cancer in combination with inguinal node dissection and/or radiation therapy. Lymphedema can occur immediately postoperatively, within a few months, a couple of years, or 20 years or more after cancer therapy. With proper education and care, lymphedema can be avoided or, if it develops, kept under control. (For information regarding other causes of lower extremity lymphedema, see What is Lymphedema?)
The following instructions should be reviewed carefully pre-operatively and discussed with your physician or therapist.
Absolutely do not ignore any slight increase of swelling in the toes, foot, ankle, leg, abdomen, genitals (consult with your doctor immediately).
Never allow an injection or a blood drawing in the affected leg(s).
Wear a LYMPHEDEMA ALERT Necklace.
Keep the edemic or at-risk leg spotlessly clean. Use lotion (Eucerin, Lymphoderm, Curel, whatever works best for you) after bathing. When drying it, be gentle, but thorough. Make sure it is dry in any creases and between the toes.
Avoid vigorous, repetitive movements against resistance with the affected legs.
Do not wear socks, stockings or undergarments with tight elastic bands. Avoid extreme temperature changes when bathing or sunbathing (no saunas or hottubs). Keep the leg(s) protected from the sun.
Try to avoid any type of trauma, such as bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches. (Watch for subsequent signs of infection.)
When manicuring your toenails, avoid cutting your cuticles (inform your pedicurist).
Exercise is important, but consult with your therapist. Do not overtire a leg at risk; if it starts to ache, lie down and elevate it.
Recommended exercises: walking, swimming, light aerobics, bike riding, and yoga.
When travelling by air, patients with lymphedema and those at-risk should wear a well-fitted compression stocking. For those with lymphedema, additional bandages may be required to maintain compression on a long flight. Increase fluid intake while in the air.
Use an electric razor to remove hair from legs. Maintain electric razor, properly replacing heads as needed.
Patients who have lymphedema should wear a well-fitted compression stocking during all waking hours. At least every 4-6 months, see your therapist for follow-up. If the stocking is too loose, most likely the leg circumference has reduced or the stocking is worn.
Warning: If you notice a rash, itching, redness, pain, increase of temperature or fever, see your physician immediately. An inflammation or infection in the affected leg could be the beginning or a worsening of lymphedema.
Maintain your ideal weight through a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcohol. Lymphedema is a high protein edema, but eating too little protein will not reduce the protein element in the lymph fluid; rather, this may weaken the connective tissue and worsen the condition. The diet should contain easily-digested protein such as chicken, fish or tofu.
Always wear closed shoes (high tops or well-fitted boots are highly recommended). No sandals, slippers or going barefoot.
Dry feet carefully after swimming. See a podiatrist once a year as prophylaxis (to check for and treat fungi, ingrown toenails, calluses, pressure areas, athelete's foot).
Wear clean socks & hosiery at all times. Use talcum powder on feet, especially if you perspire a great deal; talcum will make it easier to pull on compression stockings. Be sure to wear rubber gloves, as well, when pulling on stockings.
Powder behind the knee often helps, preventing rubbing and irritation.
Unfortunately, prevention is not a cure. But, as a cancer and/or lymphedema patient, you are in control of your ongoing cancer checkups and the continued maintenance of your lymphedema.
Revised (c) January 2003 National Lymphedema Network. Permission to print out and duplicate this page in its entirety for educational purposes only, not for sale. All other rights reserved. For more information, contact the NLN: 1-800-541-3259