Truncal Lymphedema and underarm pooling

[Raleen]

I had a lumpectomy and axillary node disection 11/04 ... the 'die' didn't help them find the sentinel node so all nodes under the right arm went austalavista - (all clear, too). Post chemo and radiation, had some PT for MLD and doing pretty consistent self-MLD. The truncal impact is pretty much 'controlled' with ongoing MLD, but I'm still having some challenges with the scar area and pooling in the underarm - and pressure on the nerves in that area - to the point I sometimes have tingling down the underside of the arm to the three "outside fingers" on the right hand. MLD seems to help - but I'm wondering if there are suggestions as to direction of MDL that could be other options. Have tried 'up over the shoulder hoping it would drain with the 'truncal' pattern I'm helping the bod find for a new path - and have tried a lot with holding the arm up, and doing MLD downwards toward the groin ... I know 'consistency' is important, but wanted to hear from others who might have found something that seems to work well for them. The 'size factor' doesn't seem to be so much as the fact that area feels more 'solid' - feeling 'filled' and feeling the pressure affecting the lower arm and fingers ... Have even tried 'vibration massage' hoping to maybe 'loosen it up and helping it disburse (?) ...

Thanks!

[seltzer]

I had a bilateral mastectomy 4/09 and developed LE in the underarm and back around the shoulder blades and eventually in my left arm. There were several frustrating months of not recognizing it. I only went in when my left pinkie was swollen.

I have been having success with MLD and keeping out of the sun, the heat, and giving up on shoulder straps, etc.

I saw my breast surgeon yesterday and she said she had NEVER had a case of lymphedema in any of her patients. This seemed like a crazy thing to say, especially because I was sitting there with her when she had failed to recognize the symptoms for three months.

I know I am in trouble when my underarms and back get itchy. I would love any other things you have found effective. I have tried wearing all kinds of things. Finally wearing Spanx camisoles that go pretty far up my back towards my neck. All of the mastectomy bras so far have been trouble, but now it seems like I can wear the prostheses again, which is a relief. I delayed reconstruction because I was having all kinds of inflammation and didn't want to complicate things. Now I feel sad that I may never be able to tolerate it.

[Cassie]

Hi, Ellen,
There are compression bras that help control lymphedema and also provide prosthesis pockets. Bellisse makes one, and so does WearEase. I like WearEase especially, and wear them with very light-weight prostheses made by Silique, so they don't cause problems from the weight pulling down on the shoulder straps and cutting off lymph flow. Other women I know use Sassybax Torso Trim Camis or other camis, rather than bras. For those you need to make your own prosthesis pockets -- actually pretty easy to do, even though it sounds like a production.

I had to laugh at your surgeon. Mine is convinced of the same thing -- never has had a patient of his develop lymphedema, even though I have it in both arms and my back and chest. I guess if you just don't diagnose it, it never happens!

I'm really sorry about the disappointment of not being able to have reconstruction. I never wanted to, so it's not an issue for me, but it's soooo hard to have that choice taken away from you. There's a website that might help with that at www.breastfree.org . Lots of stories of how other women have coped, and lots of practical help with prostheses, etc. Sure hope it helps take away some of the loss you feel!
Hugs,
Cassie

[seltzer]

thanks so much, Cassie.
makes me feel better to know my surgeon isn't the only crazy one out there.
I will definitely check out your suggestions for bras and camis.
all the best,
Ellen