Truncal or breast Lymphedema

Janis,

No wonder you have so much racing through your head!  It's enough to make anyone crazy.  So glad to hear you are going to be seen by a therapist on Friday.  I am very hopeful that you will get the information you need and start on the path of being able to manage your LE, if that is what you have.  Just a thought about travel expenses...you might see if a social worker is available through Elks who can let you know if any financial assistance is available for travel.  When I was treated at MSTI in Twin Falls a few years ago, help was available.   

 Please let us know how you are doing.

Deb

Janis, the American Cancer Society is focusing their financial assistance on travel and lodging. Just a thought, but hopefully your local ACS chapter could help with travel. With the price of gas, it's not insignficant.

Kira

I still find it amazing that my BS did not even mention lymphedema as a complication of BMX.

I still am dumbfounded that he asked me who diagnosed me with axillary web syndrome and dismissed my cording/ chest/ armpit and back tenderness, swelling and evil fullness. He assessed my hand area only as a diagnosis .....

I asked him about my back swelling....he looked at it and said " Well that's just YOU!"

I also asked him of his last continuing education background on LE.... and it had been 25 years ago in Med School.

Having a BS/ PS that is Current and Conscious of the Existence of LE and Truncal LE is a paramount choice in letting anyone touch you.....

AAARRGGAAAHHHH!

Good going to all of you. Wishing you all the best.

My truncal LE is under control, but I am still reeling from its diagnosis....its just the icing on the cake. When I land, I too have a letter I need to write.

xo

brazos

Brazos, It's so hard to find a physician who is fully informed on lymphedema, as it's not taught in med school or in residency or continuing medical education.

And, I have found surgeons to be particularly resistant, as the "blame" seems to fall on them--although we know it's multifactoral--radiation, chemo, genetics, post op care are all part of the issue.

But to say it's just YOU. Outrageous! And all too common.

We've had women contact well trained LE therapists who don't know about breast/truncal LE--so it's an area of widespread ignorance.

There is a new position paper from the NLN on breast cancer related LE and the need for early detection (although they're just talking about arms) and it concludes with the lack of understanding and knowledge of LE.

Kira

I can feel the 'ahhhhh' from here!  Nice work, Janis, for staying with it despite the RO denials.

Who would ever think it would be a relief to be diagnosed with LE? Geeeze . . .Glad you finally got a therapist to validate what you are experiencing. The decongestive therapy really helps reduce the truncal pain and swelling. I hope you are feeling better soon. Also, learning how to provide care for yourself will definitely help you feel a greater sense of control.



Had my own experience with denial of LE by BS and PS even when I reminded them I had already been diagnosed with LE by the PT I had seen. Since she hadn't done MLD but had me exercising in a manner that eventually caused a huge flare, I determined I needed a more qualified therapist to help. Same thing - shirt off for two seconds, and she said absolutely truncal LE. I felt so relieved. It's the lack of validation of what you are observing and experiencing with your body that makes you feel crazy! For a long time after I received proper treatment, I wished my docs would eventually have a similar experience as a patient and feel helpless and disempowered. They have no idea what that is like, or they would never communicate/treat their patients that way. BC is supposed to be the difficult part, but I think the after effects are much worse.

Janis, great news for YOU. Oh to be validated, heard, and assessed and treated properly!!!!  You will feel much better when this quiets down. I am still working on getting hit with Truncal LE/ adapting / accepting it... another grieving .... and dust my sorry self off and get on with things.

Kudos to every one here.

Thank you all.

xo

Brazos

Justmejanis, my BS did not mention getting an evaluation for LE. I was told I didn't need to wear a s sports bra anymore but after reading these boards I put it back on. 

The BS did say the edema was because the lymph nodes needed more time after surgery and weren't working too well now. I had three taken out. Is this LE?

Saw LT today and wants me to wear the breast binder again as well as sleeve and glove.  LE is mild in arm and moderate at breast.  BS didn't seem overly concerned but said to go with what LT said for this, said was from node surgery. 

Sure beats the alternative though doesn't it.  You sound about like I felt earlier today janis...my thought was "and the hits just keep coming".  That pity is over though.  Ordered a sleeve/gauntlet set from Lympehdivas.  Can't STAND the granny type they gave me. 

Glad they're taking such good care of you Janis.  I don't like this glove.  Sleeve and arm feel fine but the fingertips have felt chilly at times.  I really must HOPE this gal knows her stuff since she's the ONLY one at the VA occupational or physical therapy that is LE certified.  She measured and fitted for these Juzo garments.