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Oct 11, 2017 02:00PM
Runor, our lymphedema that results from cancer treatment is called "Secondary Lymphedema," because it's secondary to surgical and radiation trauma. Lymphedema that results from an in-born defect of the lymph system is called "Primary Lymphedema". People can be born with primary lymphedema present (usually affected lower limbs), or it can develop around the time of puberty. Many of us with LE secondary to breast cancer treatment have had a hard time getting our doctors to acknowledge the condition and/or to refer us to proper treatment, but some with primary lymphedema wait literally years for their condition to be diagnosed, meanwhile being accused of overeating or oversensitivity to "a little swelling."
We breast cancer-related lymphers are not even the only cancer patients who develop LE. Node sampling for melanoma, gynecologic and prostate cancers, and head and neck cancer can also result in LE. These are far less likely to be acknowledged than BC-related LE, and in some cases can be much harder to treat effectively.
It's also possible to develop secondary LE from any trauma. For instance, football players who sustain repeated trauma to their chests, or people with smack into the steering wheel in an auto accident. After the earthquake in Haiti there was a glut of new LE problems because of crush injuries from collapsing buildings. For all these people, finding diagnosis and treatment can be a frustrating life-long journey.
There is a third cause of LE, found in tropical countries where a mosquito-borne parasite infests the lymphatics, blocking lymph flow. This condition is usually referred to as elephantitis, and it can result in truly grotesque disfigurement.
For those (even doctors) who trivialize LE as "just a little swelling," the facts are that LE is an inflammatory condition that creates changes in the underlying tissues, resulting eventually in an accumulation of fibrotic tissue below the skin that cannot be reduced, which is one reason why prompt treatment is critical. Left untreated, LE can cause skin texture changes and leakage of caustic lymph fluid through the pores, resulting in skin deterioration and weeping wounds. And every kind of LE also compromises the immune response in the affected areas, making infections more of a problem.
All that just to say, the actual nature of LE is too little understood even in the medical community, leaving us to be our own best advocates, and making forums like this one absolutely essential to getting the best care to the biggest share of lymphers. I'm thankful for all the sharing that goes on here and grateful to bc.org for making it available.