Scared of ALND because of lymphedema

I had 11 lymph nodes removed, so this has always been an area of real concern and mindfulness for me. I have been fine so far (knock on wood). When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Below are some of my thoughts, which I posted last year on an exercise thread. Hope thay are of some help to you:

First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad ‘luck'.

That being said, there are many ‘little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

• No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway) check out www.creativemedicalid.com/ for beautiful jewelry type IDs
• Wear gloves when doing yard work, gardening etc.
• Wear sunscreen when out in the sun, bug spray when out with the bugs
• If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
• Carry your purse on the other side, also be careful when hauling around anything heavy, switch arms when dragging luggage etc. (at first I carried everything on the 'good' side but wonder if that contributed to me getting a hernia, now I swtich off)
• No saunas (I also avoid manicures and massages)
• Keep a healthy weight
• Keep hydrated, limit alcohol
• Don't wear tight rings, watches, bracelets on that arm
• When exercising that arm; start slowly, take your time...build up weights slowly...don't skip levels...don't do too many reps in one session
• Mix up your exercises, don't work the same muscle groups every day, you may want to work with an experienced trainer (or PT) to help you construct a balanced program
• One thing I do want to add; after my surgery I was so scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little sore...because anytime you exercise a part of your body that you haven't been using, of course, it will feel sore. That made sense to me, and gave me ‘permission' to get moving.

Ruth makes many good points, but the one I'd think twice about is not being afraid to get sore from exercise. She's so right that we can indeed exercise, even lift weights, if we have or are at risk of LE, but we want to do our best to approach exercise in a way that minimizes any soreness afterward.  DOMS - delayed onset muscle soreness- is the trainers' term for how we feel the day or two after heavy exercise, and it's an inflammatory response to the breakdown of muscle fiber. The body sends lymph 'to the rescue' when there's inflammation, so DOMS unfortunately can encourage swelling. That's why LE exercise guidelines emphasize the verrrry slow-but-sure approach to weight lifting especially, but also to build up gradually with any exercise that recruits the upper body. There are also some strategies to reduce the chance/severity of DOMS after exercise, including: after you lift weights, do some cardio; never add weight and repetitions at the same session (applies to Pilates when using springs, too); eat some protein and carbohydrate within an hour of heavy exercise; stay hydrated throughout; wear a compression sleeve and gauntlet; and add to your exertion very gradually.  Here's a link to comprehensive guidelines for exercising with LE: http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

Linda, I should also have posted on your thread in the LE forum one more thought:  my mother had BC more than 40 years ago (she's still here!) and with her mx she had every stinkin' node removed from her axilla, plus doses of rads that were higher and less focused than would be given today. Both set her up for LE, but guess what?  She never got it! And LE was not talked about, either, so I guarantee you that she has never taken any precautions. Just goes to show that while statisticians can help us with some risk assessment for LE, there are apparently many little-understood variables that mean we just cannot know if we'll get it.  Ruth is so spot on with her list of precautions, most of which are not very intrusive.

Carol

I had my mastectomy 31 years ago, had 17 nodes removed and was never told about LE.  I never got it, luckily.

I was a runner at the time and I think all the running kept it away -constantly pumping my arms, etc., but who knows?

I do think some exercise helps though - walking or jogging for instance. But I'm no expert on the subject.