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A letter to the American Medical Association (AMA) from Paula Tebeau

Dear Dr. Madara,

I recently joined the LE&RN community. It's been a great place for me for access education and advocacy for lymphatic diseases. I'm writing to you to share my personal story and experience with lymphedema with the sincere hope that it helps to bring about change. 

In 2017, at the age of 41, I was diagnosed with stage 1 breast cancer for which my treatment was a partial mastectomy and radiation. What I didn't know then was the worst part of cancer treatment was going to be that it left me with lymphedema. Many months after my cancer treatments finished my breast was swollen and pitted. I remembered having seen a physical therapist shortly after surgery who gave me signs to look out for lymphedema in my arm, she was also our support group leader. I called her for advice and she said I had lymphedema in my breast and that I needed to contact my health care provider for diagnosis to get started on PT. It was quite shocking to me that I had it in the breast that was treated with cancer, I had no idea that was even possible and I was only ever worried about getting it in my arm. That visit snowballed and threw me into a life with lymphedema. I ended up with 3 breast infections in the early stages of my lymphedema diagnosis, I underwent several screening procedures, a biopsy, and many rounds of antibiotics during a time in which I was still trying to get over the shock of having had cancer.

I was lucky that I found a good physical therapist who was trained in lymphedema to help me get to a stable place after all the infections, but it remains something I struggle with daily. My PT gave me exercises and taught me how to do my own lymphatic drainage, I don't see a PT regularly now as I have limited health insurance for PT and I save it for when I really need it. I know how to manage it mostly myself and I know the issues I need to watch for and hope that I catch them in time. I wear a compression bra which is not covered by insurance and is terribly uncomfortable. I have pain on a regular basis, in my breast, and rib cage, but still lymphedema is not in my medical chart, my PCP does not know much about it and it's seen as a non-issue. Just the other day when I talked to my oncologist about the pain I have due to lymphedema he replied with just a "Yeah, that sucks."

I work in the field of human subjects research compliance and I'm disappointed in how little research there is about lymphedema, but even more so about lymphedema of the breast. I'm adding my voice now as I also believe it can help lead to new medical standards in the treatment of lymphatic diseases and shine a light on the need for research. Please make lymphedema, lipedema, and other lymphatic diseases a priority for the medical profession.

Sincerely,
Paula Tebeau