Lymphedema is the swelling of a human body part caused by an abnormal accumulation of fluid, proteins, and cellular waste in the tissues under the skin. It occurs when there is a problem with the lymphatic system caused by one of the factors below:
-The failure of lymph vessels to develop properly
-Damage to lymph vessels by trauma, surgery, or infection
-Removal or destruction of lymph nodes, usually during treatment of cancer
Most of the advancements made in the understanding and treatment of lymphedema result from research on those who acquired lymphedema as a complication of breast cancer treatment.
Here are some common misconceptions about lymphedema:
Myth 1: It is an incurable condition. While it can be managed, lymphedema is a lifelong condition that will not go away over time. In fact, because it is a chronic progressive condition, even mild cases can eventually escalate and have serious consequences if not properly treated.
The gold standard for lymphedema treatment is complete decongestive therapy, which consists of two stages: a clinical phase where a lymphedema therapist performs manual lymph drainage and bandaging, and a self-care phase where the patient or caregiver performs the daily massage and bandaging. The clinical treatment may only take 4-6 weeks, but managing lymphedema is an ongoing process.
Myth 2: It will only develop within the first five years after surgery and radiation. Although we wish this were true, people can develop lymphedema at any stage in life. I have heard of a cancer survivor who 30 years after her treatment developed lymphedema after reaching up to pull down a garage door. It may be uncommon, but it can happen.
Myth 3: Lymphedema will make one’s arm huge. One-size-fits-all is not true for lymphedema. Like cancer, lymphedema has various stages. Stage I is mild, Stage II moderate and Stage III severe. I’ve seen pictures of a lymphedemous leg grossly misshapen, and I’ve seen cases where I could hardly tell the person had lymphedema.
Myth 4: The sentinel node biopsy that only removes a few lymph nodes stops lymphedema from happening. The procedure, while reducing the incidence of lymphedema, has not eliminated it. Genetic predisposition to any disruption of lymphatic flow may tip the scales.
Myth 5: A person at risk for lymphedema or who has it should not carry heavy objects. This has recently been disproven. In fact, gradual lifting of weights with a compression garment helps with lymphatic flow.
Myth 6: If your limb starts to swell you can wait a while to get therapy. If you notice any swelling in a limb after removal of lymph nodes, even after a sentinel node biopsy, see a surgeon right away. The earlier you catch it, the better. If the doctor does not listen, go to another M.D. who will. And if you are diagnosed, insist that you get a prescription for lymphedema therapy.
To reduce the risk of developing lymphedema, many therapists advise patients to have their arm fitted for a compression sleeve to be donned during plane rides longer than four hours. But newer findings indicate that cabin pressure at high altitudes may not make a difference in swelling. In addition, survivors may wish to wear the sleeve when lifting heavy objects with that arm. One should consult the National Lymphedema Network or Step-Up, Speak Out to get current, reliable doctor-approved advice on risk-reduction practices.
While certain triggers have been found anecdotally to bring on lymphedema (such as long plane rides or repeated puncture wounds), many experts in lymphology now surmise that those who develop lymphedema do so because of a genetic predisposition. Also, some people are born with more lymph nodes than others, providing a more protective effect.
Notwithstanding myriad myths and misconceptions about lymphedema, my main advice is never to despair. You can lead a normal life after lymphedema. Some patients turn the anger they feel toward their surgeon in not informing them of lymphedema into legislative and other action to ensure more research is directed toward this under-served condition. Others start Web sites and blogs to provide needed information to patients at risk and those with lymphedema. Still, others go on to live their lives without fanfare. All of these responses are valid.