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Jan 31, 2018 11:23AM
Check out this website, created by some longtime BCO members who immersed themselves in the medical literature as well as having the experience of lymphedema:
It really is a good place to find reliable information.
The medical professions as a whole have not been well-educated about lymphedema. Part of that is because until very recently there was hardly any research about it. Be wary of anybody who tells you things like having lifetime lifting limits or that lympedema is painless or that it's not really a worry or that measuring arm circumference is a good way to diagnose it. Those are all signals that the person to whom you are talking isn't up on the most recent science. Any lymphedema is a concern, even if it's not huge and disfiguring, but you're right - you will have to advocate for yourself because a lot of doctors don't know this.
The good part is that you're right - learning to take care of it early is a huge step in the right direction. You will need to advocate for yourself to first find a doctor willing to make a referral to a lymphedema therapist, and then find a good lymphedema therapist. A good lymphedema therapist can teach you bandaging (a good thing to know even if your lymphedema is mild), show you self-massage, and help direct you to a good fitter so you can get compression that fits you. The big problem is that a certificate saying someone is a lymphedema therapist could mean they took a weekend course, or they took hundreds of hours. There is no governing body, like there are state boards for nurses, doctors, physical therapists, etc, setting standards and keeping track of people. You will have to do some research. Stepup-Speakout is a great starting place.
Your oncologist's reaction does not surprise me. It's disappointing, but not a surprise. Lymphedema isn't really taught in medical training. My personal belief is that there's more to its frequent minimization in oncology: a lot of doctors involved in taking care of cancer patients don't want to admit how much damage they cause. They're trying to save lives, and seeing people dealing with side effects of treatment or even disability for years afterward is disheartening. So some of them just don't let themselves see it. Some of them also may be too arrogant to admit they don't know much about it, but I hope they are fewer in number. If your oncologist won't give you a referral, search around until you find someone who will.
Now here's my personal story: my lymphedema started shortly after I finished radiation 7 years ago. It was painful at first, not terribly, but I thought I had pulled muscles in my forearm. I was super skinny at the time so it was very easy to see, even though that arm did not measure any larger than the other one. Well, it's my left hand, I'm right handed, and I had played a ton of sports that used one arm and hand more than the other for more than 35 years before I was diagnosed, so they shouldn't have been the same. I had a more sophisticated test (bioimpedance) , which isn't perfect either, but showed a huge difference. But really, I didn't need a test. The shapeless puffiness vs. cut muscle with overlying veins on the other side was really easy to see. I started treating it right away, did get it down some, and now manage it with a compression sleeve and a night garment. I have a glove that I rarely, rarely wear (it's been several years now). I've had cellulitis several times, and have been seriously ill with it twice. Cellulitis is infection in the skin, and lympedema makes it more likely. When I've got something as bad as for example the flu, my arm swells. Between the cellulitis bouts and just viral illnesses, I've had a good handful of times that I haven't been able to fit into my compression sleeves so was really glad I knew how to bandage. Bandaging is very effective at bringing swelling down, and adapts to any size you are. The good part is, I do everything I ever did with only one exception - I don't dunk my arm in hot tubs.