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.
