I was diagnosed with breast cancer at the age of 52 in February 2014. I had a radical bilateral mastectomy and began breast reconstruction April 2014. Three axillary lymph nodes were removed from my affected right side and were consequently determined to be cancer free. I developed cellulitis of one breast requiring hospitalization May 2014. I underwent 4 chemo treatments over a six-week period June – July 2014. I had a blood clot in affected right arm and neck July 2014 and was hospitalized and placed on blood thinners. I had expanders replaced with implants surgery December 2014. I was diagnosed with lymphedema in affected right arm January 2015 and fitted for day and night compression sleeves. I had a third breast reconstruction surgery March 2015 consisting of a tummy tuck and construction of areolas. I had a fourth breast reconstruction surgery in July 2015 modifying imperfections. I had a second blood clot in neck on the affected right side January 2016 and was placed back on blood thinners for life. I was placed on Anastrozole (estrogen blocker) September 2016. A January 2016 bone density scan concluded Osteopenia and February 2016 I had a Reclast infusion.
Immediately following the second blood clot the lymphedema worsened with increased discomfort and fluid buildup shifting to my trunk. I found out that additional resources to help me manage the lymphedema were extremely difficult if not impossible to locate where I live. The occupational therapist referred to me by my oncologist was only able to diagnose the lymphedema, take measurements and determine what percentage lymphedema I had, write an order for compression garments, briefly explain the dynamics of the lymphatic system, and marginally demonstrate how to self-message to promote lymph flow. The OT couldn’t refer me to someone certified to do manual lymphatic drainage, was unable to provide me with further literature, diagrams/illustrations or tools to aide in self lymph movement/drainage.
I was on my own. I researched the internet. I networked with other survivors from other states. I was then able to locate a LANA certified therapist in my area that was covered under my health insurance. The earliest appointment I could get with the PT was a three month wait! Finally, after a few months of weekly visits for MLD I learned self MLD and wore my sleeves regularly to manage my lymphedema. I’ve learned that for me, exercise, MLD and compression sleeves are wonderful resources for improving and managing lymphedema.
Why, in the area I live and this day and time, is care and treatment for lymphedema so difficult to locate and receive? This is unacceptable. Enough already.
