Shoshanah’s Story

by Heather on September 27, 2017

Twelve years ago when I was undergoing treatment for breast cancer (which included chemo, surgery and radiation), the topic of lymphedema never came up. Two years after treatment, I began having radiating pain and inflammation around my torso where I had undergone my surgery and radiation. My doctors thought my pain was part of the healing process. It continued and I became frustrated and depressed because of my limited mobility and pain.

Four years after I finished treatment, I traveled to New Zealand. Upon my return I experienced shooting pain in my torso and back. My left arm and hand on the side where I had my surgery, became swollen almost 3 times normal size. My doctors just prescribed pain meds. Having had less than 8 lymph nodes removed during surgery, did not put me on the radar for lymphedema.

I spent the next few months convinced that I was never going to find answers and solutions for my pain. During a breast cancer mentor training program, another survivor and M.D. discussed her diagnoses of lymphedema of the arm and hand, but of the torso as well. I said, “Those symptoms are identical to mine”. I was fortunate to learn that also in attendance was one of the best lymphedema therapists in my area. I made an appointment to see her.

The process of reducing the inflammation was a difficult and painful one. For almost a year, I went for therapy and treatment weekly. I had to wrap my arm and hand in bandages; at night I had to wear what looked like an oven mitt that covered my arm and hand. I started to wear compression sleeves and a hand gauntlet. Slowly the pain and inflammation subsided. However, I needed compression on my torso and my search for the right bra took over 3 years.

There is no cure for lymphedema. I was taught how to do MLD (Manual Lymphatic Drainage) therapy for my arm and hand, but there is no other way to relieve lymphedema in my torso without a compression bra. I get flare ups and have had treatment for this condition numerous times, along with cellulitis, which can trigger sepsis.

Education is key. Had my doctors known more about the symptoms, it would have saved me years of pain. I learned from my experience that higher altitudes (flying or being in the mountains) for a prolonged period of time, and having surgery and radiation, were all contributing factors for my developing lymphedema.

Going through cancer is life altering. The financial aspects are even worse. We lost all of our savings and almost went bankrupt. To know that proper therapy and compression garments can help someone with their quality of life is extraordinary. To not be able to afford what is needed is criminal. Through my experience, I am speaking out and taking action. Thank you for your support in this endeavor, and please pass the needed legislation.

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