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.
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.
“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.”
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.
No wonder many women seek surgical relief.
“I Thought It Was Solved”
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.
“I was so excited to finally have some serious attention to the situation,” Phillips says. “I thought it was solved.”