preventing Lymphedema....any and all advice welcome!

Hi, Connie, and welcome! Sorry for the reason you're here, but glad you found us.

A trainer certified in a program to prevent LE would be very hard to find. Exercise is a double-edged sword. Using your muscles helps to pump lymph fluid, but it also increases the amount of fluid that's present to be pumped. So that's something you'll want to start very slowly, and with expert supervision.

More important is to know that there's a brief period of time following surgery when severed lymph vessels may be able to repair themselves. You can help them by not lifting your arms above shoulder level for the first 10 days after surgery.

Beyond that, here are some risk reduction suggestions:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Best bet is to get a referral from any doctor on your team for an early evaluation by a well-trained lymphedema therapist. S/he can take baseline measurements for future reference, give you personalized risk reduction tips (including exercise guidance), teach you a gentle self-massage to help move lymph fluid, and possibly fit you for a compression sleeve and glove or gauntlet to wear when traveling or exercising. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Looking forward with you to smooth sailing next Tuesday, and no "swell" days ever!
Gentle hugs,
Binney

I'm so worried about Lymphedema and it's on my mind constantly. My surgeon ended up having to take out the entire axilla area, so I'm very high risk. I'm starting radiation this Wed and my dr said that will increase my risk for it. I'm trying to be careful, not lying on that side, sleeping with a pillow under that arm, not lifting anything heavy, etc. but I'm still worried. One of my drs said if I don't have it by now (my surgery was 7 weeks ago) then I prob shouldn't worry, but from everything I've been reading, it can come on at any time. I was very active before my treatment and have been wanting to get back to working out (especially to lose the 50 lbs the steroids from chemo made me gain), but I'm so nervous I'm going to do something wrong. Sigh.

SAR, when you can turn worry into vigilence, you've done the best you can with a bad hand of LE cards. Binney is so right that catching it early gets you the best shot at keeping it under control, if you do develop LE. 

If you have any energy for what might be an uncomfortable discussion with the doctor who thinks you're at risk for only a few weeks, also on stepup-speakout you'll find a page written by a doctor who has LE, for other healthcare providers, all about what LE patients need their doctors and nurses to know about LE.  Here's the link: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm 

You may not feel like engaging in that discussion with the doctor now, but maybe at some point you can, because it's a very irresponsible thing to say to a patient.

Rest up--you're still recovering from a very ambitious surgery --and when you are ready, start small with your exercise.  Several of us began post-surgery with Leslie Sansone DVDs, which are walk-at-home programs that require very little floor space.  Do you know about them?  They have arm work but you can skip that part for a while and just focus on the steps, to get back into some movement.  There is also a good bit of knee lifts and leg lifts, which might be challenging after your recon, but again, you can modify easily to ignore or minimize those movements, and then gradually, as you get stronger,  add them in in small doses.  For now, maybe just walking, slowly, a little each day just to know that you are working toward your goal to return to fitness? 

Oh, and then there's this: keep in mind that there's no certainty you'll get LE, despite the risks. My mother had the old fashioned radical mx in 1968, and she lost every single node in her axilla. Then she had radiation, in doses I don't think are given these days.  She is still with us, and she has never had any LE, not even the tiniest discomfort or swelling.  So please, be vigilent, but try not to let your worry get in the way of a strong recovery and at the right time, a return to physical activity.  I'm rootin' for you!

Carol