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Nov 7, 2009 03:26PM
Nov 7, 2009 03:31PM
Goodness, of course we don't mind, ccnani. Welcome!
I'm thinking when you posted this question a couple of days ago here you lost track of the thread it was on -- at any rate, Kira, Toni, and I all posted messages there for you. It's near the end of a thread called "Massage Cautions?", here:
(Sorry, but I'm never able to get links to work that are on this board, so you'll need to copy it and paste it into your browser.)
I'd say your therapist is right on top of this and has given you good advice. When you get the sleeves and gauntlets be sure to go back to her and show them to her so she can be sure the fit is perfect. Here's a page about how garments should fit:
As to the woman in the therapist's office with the angry red arm, very possibly she had cellulitis (infection) in her arm, a risk with lymphedema that the therapist will undoubtedly recognize and sent her straight back to her doctor for antibiotics before she can do anything about the swelling.
Unfortunately you're not alone in being baffled by the lack of information your surgeons and oncs have about lymphedema. As you've discovered, our medical professionals have little training in the lymph system, so they're slow to diagnose it, and few doctors care to follow up with their patients about either the risk of lymphedema or its treatment. For that reason we're very much our own advocates. We need to learn how to protect ourselves, and then stand up for our own best interests. Why lymphedema should be the "black hole" of cancer care, I just don't know, but it sure is. According to a recent survey by Dr. Stanley Rockson of Stanford, our medical schools and nursing programs devote as little as 15 minutes to instructing doctors and nurses about lymphedema in their entire medical training, leaving us very much at risk for both lymphedema and its complications. Here's a page especially for professionals that you might want to copy and take to your doctor:
Wearing your sleeves for chemo is a great idea if for no other reason than it enforces the prohibitions against using either of your arms, but of course it does also contain any swelling caused by chemo drugs or the drugs used to combat side effects. It's especially important to use compression garments for rads, which often causes swelling that can overwhelm a compromised lymph system. So, brava! for your therapist! You might want to have her consult with your onc about the wisdom of using a port, too -- professional to professional.
By the way, I did read your post the other day on the November chemo board, but since you then posted on another thread here on the lymphedema board I didn't answer you there. The reason no one else in your group answered is because their doctors, like yours, have not given them any information about risk reduction precautions such as sleeves and gauntlets. Here's a page about reducing your lymphedema risk that you might want to share with our bc Sisters on that thread:
I hope that helps, ccnani, and I also hope the rest of your treatment journey goes by quickly and without a hitch!