I am writing today to request that the AMA have increased focus in the medical community on lymphatic disorders and treatment across all platforms. I am a five-year breast cancer survivor.
Five years ago I opted for a bilateral mastectomy for lobular carcinoma that had been found first in my left breast and two years later in my right breast. As part of the surgery, as is customary, I had lymph node dissection to biopsy for the spread of cancer via my lymph system. My cancer was fortunately caught early at Stage One and no cancer was found in my lymph nodes. Only one node was removed on my left side and two on my right. I requested information on lymphedema as a result of the dissection prior to surgery and was told that given that they felt my cancer was early stage that wouldn’t be necessary, wasn’t offered, and wasn’t available to me.
I had done some of my own research on lymphedema but didn’t have the endorsement of my cancer team to get the kind of information that might have helped me avoid the cellulitis I developed just over a year ago which resulted in severe and permanent damage to my left hand and arm and the six-day hospital stay I endured due to moderate sepsis and a result of the cellulitis. I presented with severe swelling in my hand and arm almost immediately following breast cancer surgery. I had to pay for my own compression sleeve, therapy, and massage to control the condition. My doctors refused to identify the condition as lymphedema. I believe it gave me a false sense of confidence that I did not have lymphedema.
Even as I developed cellulitis and sepsis due to a very small cut on my left hand, I was surprised that my lymphedema was considerable enough to have almost killed me. Better information and care for patients undergoing breast surgery and follow-up should be evaluated and educated about all the risks lymphedema might pose. In addition, there have been no advances in treatment or care over the past five years since I first had my bilateral mastectomy. Managing my ongoing condition is considerable and creates great anxiety for me. I hope that lymphatic disorders receive greater attention moving forward that might help me and others like me with additional screening and treatment options.
Thank you for your time and consideration,