Bilateral risk

Hi Lksher. The weekend is sometimes kind of slow. Someone will come around soon that can help you. I only had nodes removed on 1 side. Within a month of surgery my hand and forearm swelled up for about 2 months. I started trying to move the lymph from my hand to my body and it became better. Now I pay attention to all of the things that can inflame it and I try to to the lymphatic manual drainage whenever I think about it. So far I am lucky that my arm is in normal mode. I have a glove and a sleeve when I need them.

I just wanted to say hi and let you know that someone will be around soon that can help you. Hugs

LK, welcome! Sorry for the delay in responding--Sundays are sometimes slow on this board.

You're wise to be asking this question early. The quick answer is yep, you'll be at risk on both sides. But the happier answer is that there are things you can do to reduce that risk. I'll list some, and others will be along to suggest others, I'm sure--there are several of us here with bilateral lymphedema.

First, if you have time before surgery, do get a referral to a well qualified lymphedema therapist for pre-op evaluation and measurements. That gives you a basis for future reference, and s/he can also suggest personalized risk reduction options. Here's how to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

After surgery our bodies boost certain factors that help restore our damaged lymph vessels. The window of opportunity to repair vessels is short--a week or 10 days. So the current recommendation in the lymphology world is to keep your arms below shoulder level during that period in order to avoid further trauma to the lymph system and allow delicate vessels to heal. That means waiting to do any of those post-surg "wall-walking" stretches or reaching for items on high shelves.

Since you will be at risk on both sides, it will be up to you to decide whether you'll allow medical folks to use either arm for blood pressure, IVs or injections. Because there's no firm research evidence that those things can trigger lymphedema in a compromised lymph system (and because the alternatives are a bother to doctors and nurses), lots of doctors and nurses urge us to ignore risk reduction practices.The thing to keep in mind is that they won't be dealing with lymphedema for the rest of their lives--you will. Feet or neck can be used for IVs (or a port, of course); feet can be used for blood draws (unless you've had previous issues with blood clots), and lower legs work for blood pressure (if you're lying flat and relaxed). Having no research evidence sure doesn't mean there's no clinical evidence, and certain activities stand out as real risks for triggering lymphedema.

Other risk reduction strategies here:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Just being aware of the possibility of lymphedema is a great help in reducing your risk, but do let your awareness lead to reassurance and not fear. The fact is that MOST women treated for breast cancer never do develop lymphedema, so the odds are all in your favor!

Be well!
Binney

LKSHER I had level I nodes (10 total) removed on the left and SNB (4 nodes ) on the right. I did get LE on the left. So far right doesn't seem to be a problem. I do take the proper precautions.

I very rarely let them take BP on my right, never on my left but at times they can't get a proper reading on my legs. Many times my leg reads like I have hypertension when my BP is actually normal. I just had my port removed this November. I don't know what I'm going to do about blood draws. No one seems to want to do it on my foot except the chemo room. I do have good veins so they won't need to put that rubber band on me but who knows.

I also wear my sleeve on my non LE arm when I fly and do upper body strength training.

Yes I do wear a sleeve on the left all the time. I take it off at about 6pm so I'm not wearing it all day but in the summer I might if it's humid and I had something too salty to eat. This is per my LE MDs recomendations. Now my onc doesn't believe in sleeves at all. I find my arm feels better with it on. I also think maybe that's why I don't have any issues. There's a small amount of thickness/swell in the lower arm that never went away but most people can't even see it even if I point it out.

I worked up very slowly as far as exercise. started with no weights or with canned beans (1lb cans).  I do 3 sets of 10 reps using mostly 7 & 10lbs weights. There are 2 exercises I use 5lbs because I just can't get my strength back up. I also have whiplash on my left shoulder/neck from an accident 1.5 & 20 years ago. I really do need to see PT to get that worked out. I think that's why I can't get back up to the 7 & 10lb. It just hurts most of the time right now.

I use this old book from about 20+ years ago for the exercises. I don't do all the exercises but I do most. linky 

LKSHER I would ask your BS anyway about this study. I do believe the study states that radiation is sufficient if there is no presents of gross disease… meaning once the do the SNB and find invasion they radiate the remaining, not remove then radiate.

I had my surgery in 2010 so I didn't know about this. It was standard to remove level 1 nodes with tumors larger than 5cm back then. Not anymore though. Things keep changing.

There can be many reasons. I know a friend of mine had breast reduction surgery in the past. Because of this she was not a candidate for SNB and like me had level I removed… and no node involvement. I'm sure they have a reason but it's best you know what that is.

There are a lot of good doctors and treatment centers out there. I had no reason to doubt you were at a good place.