If You’re a Black Woman Considering Fibroid Surgery, You Must Read This

Minimally invasive fibroid removal can pose big risks.

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But to fit a fibroid or uterus the size of a lemon, grapefruit or cantaloupe through a coin-sized opening, the fibroid or uterus must be cut. Enter the power morcellator, which cuts or grinds tissue into small morsels inside the abdomen so the tissue can be removed.

“They Screwed You”

Dr. Amy Reed is a 41-year-old anesthesiologist and married mother of six children, ages 1 to 12, who until recently worked at Boston’s Beth Israel Deaconess Medical Center. In October 2013 she underwent what she thought would be a routine laparoscopic hysterectomy to remove her fibroids, which had become symptomatic over the previous year. But when doctors examined the tissue removed during surgery, they discovered LMS.

LMS has no specific signs or symptoms, especially in young women. Indeed, doctors are usually unable to distinguish LMS from fibroids, even when they use ultrasound, MRI, CT and/or PET scans. It’s typically discovered during or after surgery.

Even when LMS is contained within the uterus, its five-year survival rate is only 50 percent. Reed was diagnosed with stage 4 disease. The spinning blades of the power morcellator could have spread her cancer, which until then had likely been contained within her uterus. Only 15 percent of women whose LMS spreads will be alive in five years. Reed has since had surgery to remove organs the cancer had spread to, followed by six cycles of chemotherapy.

Reed’s husband, Dr. Hooman Noorchashm, is a cardiothoracic surgeon who was then an instructor of surgery at Harvard Medical School. Noorchashm was stunned to learn that a power morcellator had been used during his wife’s surgery.

“Gynecologists make an error in their thinking when they assume tumors are benign and that it’s OK to mince up tumors inside people’s bodies. No other medical specialty does this,” he says. The result?

“Power morcellation is a cool, new, minimally invasive thing, but they don’t tell you that it might spread your cancer,” says Dr. Michael Paasche-Orlow, an assistant professor at Boston University School of Medicine and an expert in health disparities.

Says Nidra Phillips of her experience, “I got a call from my doctor saying he was really sorry but that they had tested the tissue of the fibroid and it contained leiomyosarcoma and a high grade of it. Then he told me he was sending me to a gynecologic oncologist and I would be doing chemo. He said the morcellator exposed cancer to my abdominal areas. They are fairly sure they removed all of it but need to do chemo as a precaution.”

“They say, ‘We thought it was a fibroid, but it turns out there was some cancer; we want you to see an oncologist,’” says Paasch-Orlow. “They don’t tell you that they screwed you.”

This year Reed and Noorchashm mounted a campaign demanding that power morcellation be banned during laparoscopic surgeries. (Go here to learn more about their story.) The effort is gaining momentum. All signs suggest that the days of laparoscopic procedures using power morcellation are numbered.

Dealt Deadly Cards

Because black women are disproportionately likely to have symptomatic fibroids, black women are also more likely to have been burned by this procedure, which, paradoxically, has also offered so many women the chance to end their symptoms and get back to work, their families and their relationships.

One expert at the FDA’s July hearings stated that black women are two to three times more likely to have LMS (pdf) than white women. This would mean that among black women who get laparoscopic fibroid surgery or who undergo a hysterectomy to treat their fibroid symptoms, the risk that the surgery spreads their cancer could be as high as roughly one in 115.  

Estimates vary widely, but some 50,000 to 100,000 laparoscopic surgeries using the power morcellator take place in the U.S. each year. At this high end, assuming 100,000 surgeries and one woman out of 350 has her LMS spread by the power morcellator, “it is the equivalent of one 777 airliner crashing per year,” says Noorchashm. Roughly 100 black women would have been on that plane.

Noorchashm analogizes that had a defect caused one plane to crash each year, that model would have been grounded.