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Personal Stories of Lymphedema--Becky

Becky

I was on Christmas break from my job teaching at a college in 2010.  I had my yearly mammogram Christmas Eve.  Things moved rapidly after that.  Early stage cancer, surgery,  mammosite radiation.  I thought that was the end of it.  Back to work and move on.  How wrong I was!

I had heard about lymphedema (LE) but only thought it was swelling of the arm after breast cancer that could be fixed with treatment.  My surgeon said I would not get it as he was only removing one node (it was two).

I had been on breastcancer.org website under the surgery site.  I noticed a lymphedema discussion board and started following it. 

Two weeks after radiation I felt my arm to be very heavy and achey.  I had read that could be lymphedema.  I called my breast surgeon and obtained a referral to a local therapy center that advertises they treat LE.  On my first visit I was told I had Stage 1 LE in my forearm.  I would need to be wrapped for about three weeks then move to a daytime sleeve for exercise and heavy work.  I totally trusted them.  Thirty minute appointments.  LE patients were lined up in recliners.  Five minutes of manual lymphatic drainage (MLD) on affected quadrant only.  Then quick wrapping—only past my forearm.  Written exercises given out but I was not told to do them slowly.  I saw four therapists and things only got worse.  My breast, right trunk and back started swelling.  They kineseo taped my breast only.  Nine weeks later I was told since there was no change I could go find an orthopedic specialist and get myself measured for a sleeve.  They did not “do sleeves”.  I felt I was in a nightmare.  I had called a CLT-LANA center in the meantime and made an appointment.  I had to travel quite a distance.

My first visit at the new clinic was so discouraging.  I had Stage 2 LE and now in my upper arm.  I also had truncal LE in breast, right trunk, and back. The therapist felt badly about it but said I needed to continue to wrap for a few more weeks and all the way up to my armpit. I had hour and a half appointments with 45 minutes of MLD—all quadrants.   She asked me to show her my exercises.  Skin care was discussed. Precautions were discussed.  I had 21% reduction the first week.  My therapist measured me two weeks later and helped me order a day and night sleeve. She recommended a camisole for the trunk—plus kineseo taping that is helping. She helped me with insurance.  She gave me hope.  So 12 ½ weeks later I came out of the wrapping.   What relief!  I feel as if I can now begin to move forward. 

I am so frustrated that LE is not addressed more BEFORE one has breast cancer surgery.  I am a compliant patient and would have followed all of the risk reduction recommendations if I had been told.  I was so busy trying to stay caught up with work and being gone that I did not have time to do all of the research on LE that I would have liked to do.  I will never know if I could have prevented LE or stayed at Stage 1.  I am also angry that there isn’t more control on those who say they are “lymphedema trained”.  I worry about those who are not getting good care and trust incompetent therapists. 

I have learned so much from stepup-speakout.org and from the lymphedema discussion board at breastcancer.org   The support is fantastic.  I also found my wonderful new therapist through the stepup-speakout.org site.  I do hope I can help others as they have helped me.  

I would like to see more action toward prevention prior to surgery.  I don’t want LE to be a silent condition anymore.

 

Page Last Modified 09/29/2015