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Nov 30, 2012 01:26 PM NatsFan wrote:
Gwen - hate to say this but take your PS "all clear" with a grain of salt. While your risk of LE is lower with only one node removed, there are many many women who post regularly on the LE section who developed LE yet had only one node removed. Sadly, too many surgeons are under the impression that LE doesn't happen to women who have only an SNB, so they tell their patients that no precautions are necessary. That's simply not true, as too many women on the LE threads can tell you. I would strongly suggest that you learn about and observe precautions as you ramp up your exercise program. Check out the LE section here on BCO and also www.stepup-speakout.org/ The precautions are generally easy to take once you learn about them, but once you develop LE, it's incurable and you'll have to deal with it for a lifetime. According to the National Cancer Institute, rates of lymphedema among women who undergo sentinel lymph node biopsy have been reported to be between 5% and 17%, depending on the diagnostic threshold and length of follow-up. The risk is a lifetime risk. LE can affect not only the arm, but the trunk and the breast.
I see you're in Maryland - if you're near me in Rockville, PM me and I can pass along the name of my CLT. She's young, but knowledgeable, and would be a great resource for you to get a baseline consult.
Maui - Originally I got my LE therapist scrip from my BS, but after a few years I switched over to having my PCP write them as it was much easier to work through her than dealing with the hospital where my BS works. My PCP is fabulous - she admits that she doesn't know much about LE, but knows that I do and trusts me. She never hesitates to write whatever scrips I need to get therapy as needed.
Sorry to be such a Debbie Downer about LE - as we all know most women will not develop it. And please do not let it scare you away from an exercise program - as far as I'm concerned exercise is my best weapon against a b/c recurrance, and is also key to my sanity. I have arm and truncal LE - most likely I brought it on myself unknowingly when my BS and PS gave me the "all clear" to work out and never gave me any education about LE, what to look for and the precautions to take. I started exercising with a vengeance and took no precautions. I only found out about LE when I was dx with it. So I tend to be a bit protective of newbies who have had nodes removed and are looking to ramp up their exercise programs - I don't want anyone ever to have to deal with LE.
Dx 12/31/2007, IDC, 2cm, Stage IIb, Grade 3, 1/15 nodes, ER+/PR+, HER2-Surgery 01/30/2008 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 03/04/2008 Adriamycin, Cytoxan, TaxotereHormonal Therapy 07/01/2008 FemaraSurgery 10/09/2008 Reconstruction: DIEP flap (Both)