Sue Callison

US, US, US

written by Sue Callison

As a breast cancer survivor, we all have our own story. For me it started in November of 2007 when I received the news that my older sister Kimberly had been diagnosed with late stage breast cancer. She was 42. Her cancer prompted me to get tested which led to my diagnosis in October of 2008 at the age of 37. I credit my sister with saving my life since my cancer was diagnosed when it was still survivable. My sister passed in June of 2010. We were both BRCA II positive which led me to be extremely aggressive with my treatment. In the span of one year, I had a bilateral mastectomy with reconstruction, an axillary node dissection, a hysterectomy, and chemotherapy.

Four months after the axillary node dissection, I was setting up for a tag sale when I had my first experience with lymphedema. My wrist had swollen to the same size as my forearm. I went inside and cried. I had a 2-year-old son and with my limited knowledge about this condition I was terrified of what the future now held for me.

I can vividly remember the first time I put on the sleeve prescribed by the lymphedema therapist I visited post-surgery. It instantly brought me back to feeling like a patient, a reminder that I was different, and that I would now be a patient of lymphedema for the rest of my life. The first outing with the sleeve went almost as well when I spotted a young girl staring at my arm with a funny look on her face. It made me want to hide. Further insult came when the fluid began to build up between the top of the sleeve and my shoulder causing a continuous throbbing. In addition, the swelling pushed on nerves and led to numbness and weakness in my hand. This side effect from my cancer treatment was interfering with living my life and raising my child, and no one really had a better answer than what I was already doing.

But instead of accepting what I was told, I decided to look for another answer for managing my condition. After an extensive online search for compression garments, I came across Solidea, an Italian manufacturer that had recently developed a prototype for a new state-of-the-art compression sleeve. Within a short time, the sleeve resolved the fluid bulge in my upper arm, the ache in my shoulder, and restored the strength in my hand. I don’t think I could ever describe the relief and excitement I felt at that moment. I started my business in January of 2010 to provide these sleeves to the lymphedema community as an alternative to the standard approach to managing lymphedema. My story does not end here.

After flying, I developed lymphedema in my lower back and tried a pair of Solidea’s Micro Massage low compression shorts. To my amazement, my swelling was reduced in a very short time. From what I knew about compression therapy this should NOT have worked. For the last three years, I have been unraveling how these low-compression massaging garments work with the lymphatic system.

My hope for the future is that with the efforts of LE&RN and many other advocates, women will be armed with knowledge. Knowledge empowers women to take charge of their situation and early intervention provides the best chance for living a full life. I count myself lucky because I had early intervention and later found garments that allowed me to move on with my life and feel good about myself.