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BOSTON – Amy Reed, a successful Boston anesthesiologist and mother of six, is in the last place she ever expected to be: a hospital ward, as a cancer patient, with her surgeon husband Hooman Noorchashm by her side.
Last fall, doctors told her she had stage 4 leiomysarcoma, a rare and deadly form of cancer with a survival rate of three to five years.
“It was a complete shock. It was not even on our radar screen,” she said. “How could it be possible? I'd been screened. I had been tested. I had spoken to all of the right people.”
Reed's hard-to-detect uterine cancer, known as sarcoma, was discovered only after she underwent a hysterectomy to remove what she thought were benign fibroids, or masses, growing in her uterus.
The couple has been waging war ever since, not just against the disease, but against a routine gynecological procedure known as morcellation – performed on thousands of women during hysterectomies – that they believe worsened her cancer.
During Reed’s surgery, a minimally invasive hysterectomy, her surgeon at Brigham Women’s Hospital used a device called a morcellator to mince the fibroids into small pieces. This allowed him to remove the bits of tissue through small incisions in her abdomen.
Reed said she was never informed or consulted about the use of morcellation during her operation. Had she known, she said, she wouldn’t have allowed it.
“I did not know initially. That's not something they tell you when they say, ‘Your surgery went well.’ They didn't say, ‘Your surgery went well and we shredded things up,’” she said. “I learned that my chance of recurrence, meaning the disease coming back, was somewhere in the ballpark of 80 percent because of how they had handled the tumor inside of me.”
Hooman Noorchashm
surgeon and Amy Reed's husband
The couple believes the procedure spread the hidden cancer cells.
“If you disrupt the cancer inside someone's body, you automatically upstage them from a stage 1 to a stage 4 cancer,” Noorchashm said. “We were flying at 30,000 feet and we got torpedoed.”
Reed has undergone months of chemotherapy and major follow-up surgeries to remove any remaining cancerous tissue.
Overall, uterine sarcoma strikes 1 in 10,000 women, according to the American Medical Association. But among women who undergo hysterectomies or myomectomies for fibroids, the numbers are more dramatic: 1 in 350 of them have uterine sarcoma, according to the Food and Drug Administration.
Noorchashm is channeling his grief into a campaign, telling anyone who will listen that there is no place for morcellation during a hysterectomy and that it can prove deadly to women with undetected cancer.
The couple first took their concerns to administrators at Brigham and Women’s Hospital where Reed had her surgery and where her husband was working. The recovery and their campaign have taken a toll.
“My husband has put a lot of effort into the campaign and getting the word out and trying to change the surgical practice. But it is has come at a cost to him,” Reed said, fighting back tears. “We initially went to Brigham and Women's Hospital … and they basically told him, ‘Don't come back to work.'"
Noorchashm has since been relieved of his surgical duties. He spends the majority of his time researching and sharing his wife’s story.
“The magnitude of this is not small. This is probably going to be a global epidemic in stage 4 cancers of women caused by doctors,” he said.
An estimated 600,000 hysterectomies are performed every year in the United States, with uterine fibroids being the most frequent trigger for the surgery, according to the American Congress of Obstetricians and Gynecologists.
Brigham and Women’s Hospital declined our interview request. But the hospital did confirm in writing that they have stopped using power morcellation during a hysterectomy or myomectomy for the treatment of women with uterine fibroids.
That hospital isn’t the only one making changes. Temple University Hospital, the Cleveland Clinic and the University of Pennsylvania Health System also have stopped performing the procedure, while Johnson & Johnson, a leading maker of the morcellator, suspended sales of the surgical tool.
Still, many surgeons stand by the procedure.
Dr. Kathy Huang is the director of gynecologic robotic surgery at the New York University’s school of medicine. Huang specializes in minimally invasive surgery, performing more than 300 robotic procedures a year including hysterectomies. She said morcellation remains a valuable approach.
“We don’t think it’s for everyone, but everything has its risks and benefits,” she said. "I believe that we cannot take that choice away from women. It should be up to the patient and women. It should be her right to choose whether or not she is going through with minimally invasive surgery or open surgery."
Major gynecological associations have yet to advocate a ban on morcellation, but are asking for more data.
Reed and Noorchashm have taken their fight to the media and Washington, D.C., including to the FDA.
The FDA responded in April with an alert to the medical community discouraging morcellation in hysterectomies or myomectomies in women "because, based on an analysis of currently available data, it poses a risk of spreading unsuspected cancerous tissue, notably uterine sarcomas, beyond the uterus."
Noorchashm said the FDA warning didn’t go far enough.
“If I told you that Campbell's soup was causing cancer at a rate of 1 in 350, you know, the FDA would immediately pull all those soups off the shelves in the supermarket, right?” he said. “I mean, that's a no-brainer.”
But it's not so clear cut to others. David Keefe, chair of obstetrics and gynecology at the NYU Fertility Center, believes banning morcellation would be a mistake.
“We have 15 years of experience with morcellation. Alternatives would be largely an experiment. We’re happy to look into alternative experiments. But it’s an experiment, that’s the way medicine is,” he said. “We don’t know if the solution will be worse than the problem right now. Hence, the FDA’s decision not to remove it, it’s not Campbell’s soup! These are human beings. These are not soup cans. Each one is different. Each one has a different set of challenges.”
The FDA declined interview requests, but is holding a hearing this week to determine whether or not morcellation should be banned.
For Reed and Noorchashm, it can’t come soon enough.
“Our hope is that government will come in and say, ‘You, as a specialty, [are] failing to regulate yourself,” Reed said. “Until then, individuals patients are going to have to step up for themselves and say, ‘This is unsafe. I don't want it.’”
And they are doing their best to make sure other women, unlike Reed, have the chance to do that.
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