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Sep 15, 2009 03:20PM
Meg---I was told by my breast surgeon that I had no risk of lymphedema because I only had two nodes removed, and did not need to take any precautions. I took it at face value.
Boy, am I sorry! Here is an abreviated version of "my story."
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.
Unforunately, last April I had several air flights within a period of three weeks, and I developed lymphedema in my non-surgical, no nodes removed arm. See Recent Advances in Breast Cancer-Related Lymphedema of the Arm: Lymphatic Pump Failure and Predisposing Factors, Anthony W.B. Stanton, Stephanie Modi, Russell H. Mellor, J. Rodney Levick, Peter S. Mortimer. Lymphatic Research and Biology. March 2009, 7(1): 29-45. doi:10.1089/lrb.2008.1026.
When I travel, or workout, 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. . .
More research is being done to look for a genetic component of those of us who develop lymphedema with minimal disturbance to our lymphatic systems, while others can have 20+ nodes removed and never develop lymphedema.
As far as lymphedema goes, we don't want any new members to enter our "Swell Girls Society" and are trying to pass the word that indeed even the removal of one node puts you at risk for lymphedema--and an ounce of prevention just may prevent a lifetime of an incurable, uncomfortable condition requiring lots and lots of time and attention.
Please see Reducing Your Risk of Lymphedema at the StepUp-SpeakOut website.
Jane - Dance as if no one is watching!!
7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-