Rare Disease Report

Cancer Crusader Loses Battle to Leiomyosarcoma

MAY 25, 2017
Jim Radke
Amy J. Reed, MD, PhD, passed away this week at the age of 44, in her home in Yardley, PA.  She is survived by her husband and their 6 children.
According to her husband, Hooman Noorchash, MD, she died from complications arising from uterine leiomyosarcoma, a rare cancer that derives from smooth muscle tissue. The estimated incidence is 0.64 per 100,000 women.
Dr Reed has been fighting this cancer, and the medical establishment, since 2013 when she learned she had the disease.
During the minimally-invasive morcellation procedure, the spinning blade that slices up tissue during the can also open cancerous tissue and give it an opportunity to spread, which is what happened to Dr Reed. The procedure removed her fibroids but allowed the hidden smooth muscle cancer a means to metastasize.  
Soon after learning that the procedure likely led to a spread of her cancer, Dr Reed started her crusade. In 2013, morcellation was being used on 50,000 women a year in the United States. Dr Reed and her husband send emails to the FDA, device makers, hospitals, legislators, professional societies, news agencies, and more to share their concern about the risk-benefits of using morcellation.
Below is a video posted by Dr. Noorchash in which he and Dr Reed presented their case about the use of Morcellator:

The couple’s actions were initially discouraged by the gynecology community, but their efforts eventually paid off. In November 2014, the FDA warned “against the use of laparoscopic power morcellators in the majority of women undergoing myomectomy or hysterectomy for treatment of fibroids.”
Limiting the patients for whom laparoscopic morcellators are indicated, the strong warning on the risk of spreading unsuspected cancer, and the recommendation that doctors share this information directly with their patients, are part of FDA guidance to manufacturers of morcellators. The guidance strongly urges these manufacturers to include this new information in their product labels.
Dr Amy Reed was born in Bristol, Pennsylvania and received her medical and doctorate degrees from the University of Pennylvania. She had positions at Harvard Medical School, Beth Israel Deaconess, and the University of Pennsylvania.
Leiomyosarcoma is a rare cancerous tumor that begins in smooth muscle cells. It spreads through the blood stream and can affect the lungs, liver, blood vessels, or any other soft tissue in the body. The exact cause of leiomyosarcoma is not known, although genetic and environmental factors appear to be involved. It is most often found in the uterus or abdomen.

Image of Drs Noorchash and Reed from ABC News.

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