Sentinel Lymph Node Biopsy and Lymphedema

Shannon, studies of the risk of LE after SNB have very inconsistent results, but it's clear there IS a risk. The many studies I've looked at seem to give a range of about 3% to 15%, depending on how the study defined LE and the number of years patients were followed.  It is known for sure that overweight brings greater risk, so as you think about how insistent you might be on avoiding those arms, include your weight/BMI in your deliberations.

Also, best practices are to allow two weeks for your damaged lymphatics to heal before stressing the area under your arms--and that means argue back if you are told to do 'wall walking' or any kind of reaching, stretching exercise that has you lifting your arms above shoulder level for those two weeks. Our breast surgeons justifiably want to help us avoid frozen shoulder after mx, so longtime practice has been to start range of motion exercises and stretches immediately after surgery. But when nodes are removed--even just one--this activity may well eliminate any chance the lymphatics have to heal in the critical first two weeks.

One study demonstrated that delaying the shoulder exercises for two weeks had no long-term impact on shoulder mobility--we can wait those two weeks and then do the exercises to good effect--but the immediate-exercise group was 2.7 times as likely to get LE as the group that waited two weeks.  That study included only women who had extensive node dissection, not just SNB, but still...like the needle sticks/BP precautions you're thinking about, why not take the precautions?  Which of course, can mean insisting on precautions.

I had only 5 nodes out for SNB and got LE--which is why I say that even a 3 or 4% risk is enough to do what you can to avoid LE.  Best of luck--

Carol

My PT averages 3-5% per node.  Number of nodes out ranges tremendously.  Additionally, the other factor seems to be that some people are susceptible, and it's not just people who are overweight.  I think they really don't know much at all about LE, and so it's best to do whatever you can to avoid it.  Radiation and chemo both up the risk, I'm sure there are lots of other risk contributors, too.

Also consider sleeves for flying and other activities, all under the direction of a PT.

Recently we put up a thread about how some people are at higher genetic risk.

I was "low risk" also--low BMI, 3 nodes out, no chemo--but it showed up three weeks post op.

I'll bump the genetic risk thread.

I didn't mean to suggest that being overweight causes LE, just that studies show it is a risk factor. With only 5 nodes removed and no rads or chemo, I look back and have no reason to suspect I may have been in the genetically susceptible group (my mom did not get LE after full node dissection and rads). I was overweight at the time of surgery, although not in the 'obese' BMI range. So I do wonder if I had not let middle age weight gain happen, might I have avoided LE?



Most important, my BS totally dismissed my risk of LE when I asked, so I had zero precautions education until I had symptoms and stumbled my way here to find out what was going on. My view now is as others have said here: take every precaution you can, even if it means arguing and being a difficult patient. And in my case, it means working to reduce my weight, which is going pretty well although gee...exercise certainly does bring with it even more LE precautions!



Carol

Binney, I bake tons more than I eat.  I am blessed to have a husband with world-class metabolism, who can eat what and when he wants and still fit into clothing from his high school days (that he does indeed still have and wear some of those jeans is another topic entirely--we are both in our late fifties...). So DH relieves me of the bread-consumption burden.

But funny thing, a year ago I went for the first time to a four-day bread baking school, while DH skied nearby.  You leave school each evening with a crazy amount of bread. We ate bread for breakfast, lunch, and a pre-dinner snack, and then DH and I ate out in restaurants every night. I was not getting much exercise in.  Driving the 14 hours home, I was sure I would see lots of needle movement on my scale the next morning.  But I lost three pounds during the week!  Truly I have stopped trying to make sense of the whole calories in/ calories out thing, and any notion I ever had about reducing carb intake to lose weight is out the window.

This week I'm back at the bread school, only now working out every day for 90 minutes before heading to class.  I hope that doesn't somehow upset the bread/weight karma I had here last year and make me gain a few pounds!  Seriously, I have been losing slowly, about 2 lbs a month, in recent months.  That pace is fine with me, so long as it continues.  My year of bmx/recon/LE has certainly reminded me of the benefits of being patient.

Carol 

GreenMonkey, Wow...good for you for standing your ground! That's a terrific report, and I hope you're feeling good and recuperating seamlessly from the surgery.

I saw my PS today to check on nipples he formed last week. We chatted about tattoos, and he said something I thought I'd pass along here. I don't know if this is study based or just his observation, but he said that waiting at least 3 months after nipples to do tattoos results in a better quality result, and considerably much less fading of the ink.  Perhaps this depends on the type of nipple recon (mine was done entirely from the breast skin, no graft), but I wonder if anyone else has been told something similar.