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Every year the equivalent of an airplaneful of women wind up dying when their minimally invasive surgery to remove fibroids or their uterus accidentally spreads undiagnosed uterine cancer. Many of those women are black, yet few of them fully understand the risks.

A growing body of evidence suggests that many women should steer clear of these minimally invasive, or laparoscopic, surgeries. A surgical instrument called a power morcellator, central to many laparoscopic surgeries to remove fibroids or the uterus, can spread an aggressive form of uterine cancer, called leiomyosarcoma, or LMS, that doctors can rarely detect until they are in the middle of surgery or when they are examining the removed tissue afterward.

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The risk to a woman, black or white, whose fibroids are symptomatic enough to seek surgery is high. So is the likelihood that black women have been harmed by the procedure. Yet black women’s voices aren’t being heard in the campaign to end it.

Only one black woman—Nidra Phillips, 51, a New Orleans-area resident who had surgery in April—has come forward to say she was harmed.

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“I had laparoscopic surgery, which sounded great,” says the mother of two sons, ages 17 and 24, who has been married for 26 years and who lacked insurance until this year. “‘Two weeks, don’t worry, you’ll be on your feet,’ the doctor said. I did not know that there was another option. I never knew that some fibroids could contain cancer.”

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The Impact on Black Women

Just to be clear: Uterine fibroids are not cancer; nor do they cause cancer. They are benign, noncancerous growths in or on the uterus. They can be as small as a seed or a bean or grow as large as, or larger than, a grapefruit or cantaloupe.

By age 50, up to 80 percent of black women have fibroids. For reasons no one fully understands, black women are two to three times as likely as white women to have fibroids with symptoms, and black women’s symptoms create problems at a younger age. Symptoms include heavy bleeding, cramping, abdominal pressure, an enlarged lower abdomen, frequent urination, painful sex, fatigue, miscarriages and infertility. Fibroids cause women to miss work and forgo career advancement and can interfere with their relationships.

“If I was on my feet too long, if I lifted anything heavy, I would start bleeding,” says Phillips, whose job as a janitor at Tulane University offered her health benefits. “I never knew if the bleeding would stop or it would continue until I needed another transfusion.” She had already had one.

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No wonder many women seek surgical relief.

“I Thought It Was Solved”

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Surgical options fall into two buckets: surgery to remove fibroids, a myomectomy; or surgery to remove the entire uterus, a hysterectomy. Several years ago, when Phillips was on Medicaid, her’ attempts to get a hysterectomy were denied. She was told that her symptoms would end when she reached menopause.

Traditional fibroid surgery—called an abdominal, or open, myomectomy—requires an incision roughly 8 inches long, a three- to four-day hospital stay and an at-home recovery of six to eight weeks. The fibroids are removed intact, as is the uterus during a traditional hysterectomy.

Laparoscopic myomectomies and hysterectomies feature incisions roughly the size of a quarter, hospital stays of mere hours, and recovery time of a month or less, allowing women to return quickly to their families and jobs and often preserve their fertility. These procedures also lead to fewer complications and deaths than either type of open abdominal surgery.

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“I was so excited to finally have some serious attention to the situation,” Phillips says. “I thought it was solved.”

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”

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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.

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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.

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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.

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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.”

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“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.

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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.  

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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.

But as Dr. Thomas F. Floyd—a professor of anesthesiology at Stony Brook University Hospital who attended the FDA hearings—wrote in an email: “Notably and shockingly, there was not a single black woman at the meeting giving testimony, leading one to come to the proper conclusion that they are grossly uninformed and remain in the dark as to what deadly cards they have been dealt by morcellation.”

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“There’s a self-selection process to these novel laparoscopic operative cases,” says M. Natalie Achong, M.D. of the Yale University School of Medicine’s department of obstetrics, gynecology and reproductive sciences. “They are done in certain settings. I’m not sure that many black women have the opportunity to avail themselves of them. Often black women are having their uterus taken out the usual way and they may not have access to state-of-the-art procedures.” 

“It’s a marker of people who have better insurance policies,” she says.

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What to Do?

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If you (or someone you love) have been told you have uterine cancer—or if you’ve lost a loved one after minimally invasive fibroid surgery that used a power morcellator—make sure your voice is heard.

The FDA’s public comment period on this issue closed Aug. 11, but anyone can go here to sign on to Reed and Noorchashm’s Change.org petition. You can also contact the Fibroids Project, a fibroids education project started by an African-American woman. 

If you are considering fibroid surgery, at a minimum, first ask your doctor how he or she plans to protect you if cancer is present. You can tell your doctor that you do not want tissue morcellated inside your body, whether through the use of a power morcellator or by hand.

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And, again, to be clear, this may mean that you will not qualify for a minimally invasive procedure.

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In July, Reed returned to work. Reed and Noorchashm are very optimistic about her prognosis. But they’re members of the medical community and affluent and have access to the best doctors and health insurance.

Nidra Phillips, on the other hand, is now out of work. She is almost done with her chemotherapy, and the CT scans of her lungs and abdomen show no signs of cancer. But her oldest son is helping to pay the rent and she can barely walk to the kitchen to pour a bowl of cereal. She has been told that it will take five months to receive a Social Security disability check. She and her husband are struggling to pay their bills.

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“I’m upset,” she says. “I would not have placed myself in this position if I had known there was another avenue to take for surgery.”

Philadelphia-based writer Hilary Beard is co-author of Promises Kept: Raising Black Boys to Succeed in School and in Life and Health First! The Black Woman’s Wellness Guide, both of which have won an NAACP Image Award. Follow her on Twitter and Facebook