Yes, it is one more extra job to educate our care providers. You have a vested interest in the subject. Even the experts know very little about lymphedema. I was diagnosed with stage 3 uterine cancer in 2013, and my surgeon removed 84 of my cancer-free, non-swollen lymph nodes before performing the tumor debulking surgery. She hadn't bothered to describe her procedure, the risk involved, or options for treatment. I knew the term lymphadenectomy must mean that some lymph nodes were to be removed, but I thought she would just be taking a discretionary few near the tumor site. (I didn't know how to spell the word, and didn't look it up, which is something I will regret for the for rest of my life.) A few months later, when I asked if obvious swelling in my pubic area was from the hysterectomy, her response was: "No that's a lymph node I missed. I would have taken all of them if I could have." I was, and am still stunned by this.
I was not diagnosed with lymphedema until one leg became impossible to stand on without pain. I had discovered lymphedema on the Internet and suggested it to all of my doctors. My young, bright hematological oncologist said, "You couldn't have it in that leg because your inguinal nodes weren't removed on that side." When my surgeon, the gynecological oncologist, had to recognize I had lymphedema, she acted curtly, and sent me on me way without suggesting therapy. I was able later to get in to see one of the handful of respected lymphedema experts in the U.S. He could see that one leg was larger than the other, but told me that the new swelling on my back must be due to hormones, and told me the pain in my arms must be from some other source, given the locations of the nodes that were removed as stated on my surgical report. I couldn't even shake someone's hand without arm pain. My limb lymphedema is now more obvious in every limb, has encapsulated my entire trunk, and has expanded to my neck, shoulders and head. My face and scalp, even the inside of my mouth burn and are swollen. I am losing my hair again, eyelashes, and eyebrow hair, as my tissue gets destroyed from the inside out all over my body. I was only offered a lymphoscintigraphy when I saw a doctor about lymph node bypass surgery. The test showed that I had zero lymphatic uptake on my entire back side.
I have heard all kinds of ignorant remarks from physical therapists and doctors alike. Even the acquired wisdom about therapy seems to be contradictory. They say that swimming is good. I was a regular lap swimmer for 25 years. Now swimming is difficult for me because it inevitably increases my swelling. Perhaps light exercise is good for the vascular system and mobility. But since it is known that being overweight stresses the lymphatic system, I'm wondering if maybe a great number of lymphedema patients are doing better simply because they are losing weight via the exercise. They tell us not to wear tight clothing, but to wear compression at all times. My compression garments regularly bind my swollen groin.
There is not enough known about the lymphatic system and lymphedema to begin with, and even what is known to some, has most likely not been absorbed by the care providers in front of us. Yes you have to educate your providers, and continue to be vigilante about where blood pressure is tested. Our care providers, like our politicians, are in many ways just winging it. surnonodesetoday.com/community/bonnie-annis/2017/12/is-it-my-job-to-educate-others-about-lymphedema' target='_blank'>View Original Post
I'm in the same boat, having to explain it to every surgeon and nurse. It's curious that it's so common and so ignored. I guess when doctors are dealing with a potentially fatal condition, like cancer, anything that doesn't kill you isn't a concern. But they really underestimate how it affects quality of life. I summarized all I know to quickly share with people here: http://apuffofabsurdity.blogspot.ca/2017/08/prevention-as-ounce-of-cure.html