Radiation and Lymphedema

mcgis

How many of you got lymphedema after radiation?

Did you have lymphedema before starting radiation and it then got worse? Can we wear our sleeves and gloves while getting radiation?

I've been given the choice to either get radiation or not. I've decided to do it to drop my chances of cancer reoccurrence from 15% to 5%. My radiologist told me that radiation can make lymphedema worse (great). I have mild LE now and am scared it will get worse.

Thanks!

Lenn13ka

mcgis, I got lymphadema about 3/4 of the way through rads. I had my axilla radiated. It got worse after rads but did 2 months with an LE therapist and have it under control. I might get manual massage during rads to keep it from getting worse.

LymphActivist

Surgery produces swelling as the lymphedema pathways are disturbed and take some time to regenerate and absorb the excess fluid. This temporary "post-surgical edema" usually disappears as the lymphatics return to normal function. However, radiation retards reestablishment of the lymphatic network and it causes fibrosis of the irradiated nodes and filamentary structures that support and energize lymph vessels. The result is that whereas lumpectomy with sentinel lymph node dissection might result in a 6% risk of lymphedema, and lumpectomy with axillary clearance 24% risk, adding radiation might raise these risks to 15% and 40% respectively. There is a trade between reducing risk of local recurrence by radiating the breast VS accepting a chance of mostly salvageable recurrence VS increasing risk of lifelong lymphedema.

See my LymphActivist's Site at http://www.lymphactivist.org for further information about breast lymphedema. Follow the tab RESEARCH --> Breast Lymphedema.

mcgis

bump for others input??

mcgis

anyone else with experience with this?

ziggypop

I would have a long talk with your radiologist - where specifically are they targeting the RADS, could they hit just the breast or is it the nodes they're trying to 'get'?Then I'd talk with your PT, tell him or her what's going on.

Beachnut

I got LE in my left arm and it started out in my breast but then it turned into radiation fibrosis of my breast. I had a lumpectomy and now, with my situation, I may end up getting a complete mastectomy afterall.....not fun.

sammolisa

I got LE right away after rads were done.  It went into my hand and arm about a year later.   MY left arm right now are holding steady at about an inch bigger than my right arm.   LE spec says this is as good as it will get.  I am used to it now.  I can tell when i need to change wraps - wear diff ones  - tighter ones etc.   Although I do believe my air flying over the last few years has exacerbated it. 

georgie1112

I choose not to have my axillary area radiated because of the risk of LE. I am happy with this decision.  

I still got very mild intermittent LE when I fly or do too much with my arm, but it is under control. I had an infection after surgery which went I to my arm which didn't help.