A letter to the American Medical Association (AMA) from Brenda Elliot

Dear Dr. Madara,

I received an email from LE&RN regarding my chronic condition of Post-Secondary Lymphedema due to Breast Cancer Surgery. I felt compelled to write to you about my own experience with this debilitating, chronic, and life-threatening disease.

I was diagnosed with Breast Cancer in 2012. The shock of hearing the diagnosis felt like the end of my world. I had 5 children, 3 of whom were younger in age. I was set up for a lumpectomy,  chemotherapy and radiation. I went to “Chemo School” where I heard about the chances of developing Lymphedema post-surgery. It sounded like something that I would definitely not want!

So, following the surgery when I woke up and asked the nurse what the tube coming from my side was for, she said a “drainage tube” I knew then that the surgeons had taken lymph nodes. My heart sank because I knew what that meant! The possibility of me developing lymphedema increased dramatically.

I had surgery in February 2012. I then went through treatment and had radiation. I noticed in April 2012 that my arm started to have strange feelings in it. I told my doctor about it at that time and was basically told that it “was my imagination.” The “feelings” in my arm continued. Eventually, I was sent to the rehab section of the Cancer Institute for diagnosis and subsequent treatment for lymphedema in my right arm. They put me in an “off the shelf” compression garment that did not have the proper compression for my case of lymphedema. I wore them as I was supposed to during the day. I asked if I needed “nighttime” compression and was told that I did not need it. The choices these “professionals” made allowed my arm to increase in size. It was also chronically painful!

I heard about a symposium in another city. This was where I was seen by a “Compression Garment Representative” at the symposium. The man approached me and said sympathetically, “That is not a well-managed arm!” He said that whoever had put me in that kind of compression sleeve was wrong for doing so. He suggested that I demand to be put into a “custom garment.” So, that’s what I did when I got back to my hometown.

Lymphedema has ruined my life in so many ways. In this regard, it has been worse than the initial cancer.  I have been in the emergency unit at our hospital four times since 2012 due to infections in my arm that start for unknown reasons. One time I was told I was close to developing sepsis. I have lost time from work;  I have had to endure many trips post-hospitalization to the I.V Clinic for treatments.

I can’t dress the way I'd like because I have to buy clothes too big for me due to the one arm. I can’t enjoy the sun like I used to. I am self-conscious around friends and family. I don’t go out because I can’t dress up. I am too ashamed to go to a beach or a pool because of lymphedema. My self-esteem had suffered greatly.

I have wasted thousands of dollars and time traveling to clinics on treatments that are supposed to reduce the size of my arm, and they don’t work. My “Manual Lymphatic Drainage” (MLD) costs, which do help the pain but don’t reduce the swelling, are $100.00/ hr. and are not covered by any insurance I have.

I heard that recently an article written by Dr. Stanley Rockson was quickly rejected by JAMA stating the “tone was inappropriate for their audience.” I find this to be appalling and unacceptable. My story is my reality, it needs to be accepted as such! I demand that JAMA reconsider their erroneous decision. Dr. Rockson is a leader in our battle for much-needed research and development for the many, many people suffering because of lymphedema.  Lymphatics is still not sufficiently taught in medical schools. I want to add my voice because I believe it can lead to new medical standards in the treatment of lymphatic diseases. Please hear my voice. Please make lymphedema, lipedema, and other lymphatic diseases a priority for the medical profession.

Brenda Elliot, Alberta, Canada