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Topic: 1st swelling in 19 months

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Sep 11, 2006 04:58PM

kimf wrote:

Hey! I just joined the LE club, another one like the br ca club that I never wanted to join but so glad you are all already members. Not sure why after 19 months that my arm decided it was time to swell a bit, but it has. I noticed slight swelling Sat morning and by Sunday I was measuring it to make sure I wasn't crazy. DH confirmed it is about 1 or 2 cm larger than normal at the wrist and looks fairly normal after the elbow. Not much swelling at all in the hand. I have been going to a physical therapist that specializes in LE and breast cancer recovery for about a month and now all the sudden I get LE. Could this be from the massages she's been giving to help me move my shoulder? Other than that, all I can pinpoint as the cause is a small nick on my index finger that is far from infected. Looks almost healed today. Ugh! Just disgusted with this whole mess.
Kimf Dx 12/16/2004, IDC, 3cm, Stage IIIC, Grade 3, 15/23 nodes, ER-/PR-, HER2+
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Sep 11, 2006 05:50PM NPat wrote:

Gosh, it is great you are on top if the swelling. LE can happen any time. My swelling started 3 months after surgery. A small nick could cause problems. If your PT is experienced in LE and appropriately trained, I doubt if the massage could cause swelling... if she isn't trained... could be.

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Sep 12, 2006 06:40AM inspiewriter wrote:

Could be either of those causes, or neither. Sorry you have to join us!

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Sep 12, 2006 08:03AM Binney4 wrote:

Welcome, welcome, Kim!

Glad you found us down here. It's great that you're on top of this so quickly -- that will really help.

Lymphedema (LE) therapists are not yet subject to rigorous training standard in the U.S., so we do have to make sure anyone who treats us for LE meets or exceeds the standards of the Lymphology Association of North America (LANA). So do ask before you start any further treatment: she should have at least 135 hours of specifically LE training beyond her PT or OT certification and at least a year of supervised LE therapy experience. At the present time, anyone with a week-long quicky course can treat, and some of us have had rotten experiences with underqualified therapists. Some states do have legislation under consideration that would make the LANA standards law (and I believe PA is one of them...not sure), so after you get your head around your LE diagnosis and treatment, you might want to poke around to find the group that's working in that direction and lend a hand. Just a thought

The way I understand it, if you nick your hand it's a signal for your body to send out extra lymph fluid to deal with the threat of infection. And extra lymph fluid is not what you want with a compromised lymph system. On the other hand, certain kinds of massage do certainly wreak havoc with this, so I'll add my agreement with the others that, depending on the training and experience of your PT, that could be a problem.

In the end of course it doesn't much matter what precipitates this rotten condition -- it's how we deal with it that counts. Sharing here on the board has certainly helped me come to grips with it and given me tons of ideas for coping that I couldn't have gotten anywhere else. So do stick around and let us know how it's going for you.

How's your shoulder doing, BTW? Hope that's been resolved for you.
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Sep 12, 2006 06:25PM Dawnt wrote:

mine started 2 1/2 years after surgery.

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Sep 15, 2006 11:54AM kimf wrote:

Thanks everyone for your responses. I'm doing better. The swelling is now down to less than a cm in my wrist. My upper arm is back to normal. The therapist I'm seeing is 100% familiar with lymph massage etc..her whole practice is for post cancer patients, 80% are breast cancer related. She thinks that my swelling might have come from the cording in my arm. I hadn't been exercising my arm at all. Once I went to her for massage & stretching, the cording became very pronounced. I was over-stretching on my own and didn't realize it. Now I'm back on track and the swelling is going away, hopefully to stay.
Thanks again, your input is so helpful.
Kimf Dx 12/16/2004, IDC, 3cm, Stage IIIC, Grade 3, 15/23 nodes, ER-/PR-, HER2+

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