Lymphedema and reconstructive surgery

I am interested in the thoughts on this as was thinking about surgery to balance me out...but have LE in my trunk and really trying to keep it under control

I had immediate DIEP because the sentinel node looked clean during initial evaluation. Micromets weren't found until more complete pathology was accomplished. Then the surgeon insisted on full axillary dissection 2 weeks later. I do have some truncal edema now also but the tissue is warm & matches my "good" side pretty well.

Funny that jan's onc doesn't realize the lifetime risk of LE - perhaps she could print some information from SUSO and educate him!

Jan-m, SUSO is short for StepUp-SpeakOut.org. There's lot's of information there, and if you haven't visited the site yet you might want to take some time to look around. But the information vlnrph is referring to is a page for doctors, written by a doctor with lymphedema. It's here:

http://www.stepup-speakout.org/essential informat for healthcare providers.htm

Hope that helps! Be well,
Binney

Hi Ladies, I am new to the lymphedema thread.. I am hoping for some help?

I had a BMX in 2011, reconstruction was Feb 2012 implants.  I am now feeling pain under both arm pits, mostly on the left side (non effected side) with burning/pulling nagging pain on the side of the breast, on the scar, under the arm and down the side? I feel like there is a pulling (crawling) feeling in the left breast and muscle achy all the way to the back (scapular) is this lymphema? Do I need to worry??  I have swelling under the breast (on the ribs) and swelling between the armpit and the breast.  Getting worried and annoyed!! Is this normal??

Binney, that's what I think and was told by another on a different thread.. It is painful and all over as you say. I really don't understand how/why after 1 1/2 yrs this is starting now?

I made an appt with my ps for wed so will see her thoughts. There is off/on burning and numbness, achy tugging feel. Edema in armpit outward and down. I thought maybe an infection? Or something worse..

Thank you Binney, I will look at the link now!! Xo

B123, sometimes it takes a while to get an appointment for evaluation by a qualified lymphedema therapist, but I hope you persevere and push for that.  In the meantime, many of us find that compression relieves some of the symptoms. You might investigate a compression T shirt that will apply pressure right into the armpit and of course, in the area nearby that's bugging you so much. I wear UnderArmour men's T shirts (womens' versions have little cap sleeves that cut into the armpit; the mens shirts have longer sleeves). I also have a variety of shapewear, including some Spanx and other brands that are essentially elbow-length shirts made with tons of spandex. The advantage of shapewear if you can find what fits well is that the necklines are wardrobe friendly, whereas the UnderArmour shirts are not very compatible with most other clothing.  A shapewear cami might help too, if the straps are wide and the armholes are not cut too low to do any good.  Worth investigating!  I hope you get some help and relief soon.

Carol

B123, canoeing 8 miles is a lot of stress on areas at risk for LE. But if it's been a few weeks, it seems unusual to me that paddling alone would be the cause of your current symptoms. But have you done any highly repetitive, or heavy-lifting activity since the canoe trip?  Maybe insult-added-to-injury is at work here.  A compression T that puts pressure on the whole area might be better than a cami. If you've got extra fluid floating around, a cami might encourage fluid to move around where a very snug T would give it less chance to continue to pool in one spot or another. There are sure no guarantees here, but if you can try a compression T or even a cami that's cut really high, you'll know soon enough if it helps you feel better.  When I have not worn my compression sleeve enough, I get that horrid burning feeling, and putting compression on --sleeve plus an UnderArmour T shirt--always makes me feel better. One problem for you is that your tissue is quite tender now, so the very process of wiggling into a very snug compression garment could aggravate things, although after a little time once in the garment, it might feel better.  

I don't know about LE ever going away, but my own experience is that it can become quite manageable. I'm very lucky that mine has always been on the mild side, so I started from an easier place than a lot of women.  I too am a paddler and can go quite a distance for many days in a row, wearing my compression sleeve and gauntlet plus a compression shirt. But that's after a slow and steady program of weight lifting to prepare my arm and torso for the stress of paddling. I'll be happy to tell you all about that, and get you some resources, if you like--after you know what you're dealing with and get some relief through good therapy.   If you have LE, it's best to put off any heavy exercise until the LE has stabilized.

Do you have access to a swimming pool?  Some lazy movement in the water helps some of us when lymphedema is barking at us.  Compression from a bathing suit, if it has good coverage, helps too!

So, I just looked up the LE compression garments and it shows sleeves that do not cover armpit and the bra/torso that does not cover armpit? Maybe I will look at the underarmour ones you spoke of?