When I was diagnosed with breast
cancer, I chose to have a unilateral mastectomy with immediate TRAM
flap reconstruction.
My surgery and recovery went well.
I was told I would not get lymphedema since I "only" had a sentinel
node biopsy with only two nodes removed. No one ever mentioned
risk reductions or compression garments for flying, and my breast
surgeon was well aware that I planned on traveling as soon as I
possibly could.
I scheduled a trip to Europe, halfway through chemo. Upon
arrival at our hotel, I felt my arm was heavy and sore, my breast
was heavy and sore and my entire trunk was painful and swollen.
I had no clue what it was, and thought it was just post-surgical
swelling, and reactions to chemo. It did resolve in a few days.
I was again sore when I returned home, but that also resolved in a
few days.
I then scheduled a trip to Hawaii,
on a "milk-run" flight--New York to San Fran to LA to Honolulu to
Lihue. This time my arm, breast and trunk were even worse.
When we returned, I noticed a hard swelling on the cleavage area of
my reconstructed breast.
Of course, I thought this was a
breast cancer recurrence and immediately went to see my breast
surgeon. After examining the "hard spot" my breast surgeon
pronounced that it was fat necrosis, because I was a former smoker.
I asked her how that could be--it was totally different from the fat
necrosis on the lateral side of that reconstructed breast. She
told me that is what it was, and should come back and see her in six
months.
So, after finishing chemo and
having clear PET and CT scans, my sister and I decided to go to a
spa for a long weekend to celebrate. As we were looking
through the "menu" of spa services, I saw a listing for lymphatic
massage, which the brochure said was a very light touch, and I
decided that I would have that massage.
Imagine my surprise, distress and
horror when the massage therapist (a German woman, trained as a
lymphedema therapist in Germany) said to me "Do you know you have
lymphedema? It is in your arm, your breast and your thigh.
That hard spot in your cleavage is Stage 2 Lymphatic fibrosis, and
it is also starting to form fibrosis on your arm and thigh."
It was like getting "the call"
with the breast cancer diagnosis all over again.
The German therapist stressed the
importance of finding a lymphedema therapist when I got home and
getting appropriate treatment.
I found a wonderful
lymphedema therapist, went through the intensive portion of
treatment, and now have my lymphedema under control.
I do my MLD and exercises every
day, wear my sleeve and gauntlet, and sleep every night with my
breast binder and
Swell
Spots™.
When I travel, I
always wear my sleeve and a gloves with fingers, a compression bra
and compression stockings.
Sigh--if only I
knew then what I know now. . .
