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Married doctors turn personal tragedy into patient-safety crusade

Marie McCullough, Staff Writer

Updated: Sunday, February 14, 2016, 5:29 PM

Amy Reed and Hooman Noorchashm pictured outside of their home. A machine used on her fibroids spread what was yet an undiagnosed cancer.

Hooman Noorchashm remembers every detail of the first time he met his future wife, Amy Reed, 21 years ago in an immunology lab at the University of Pennsylvania - down to her ponytail and Bugs Bunny T-shirt.

At home in Yardley, Ryan Noorchashm, 3, enjoys some pineapple while his parents, Amy Reed and Hooman Noorchashm work on a laptop. The couple, both doctors, have worked to have power morcellation banned from gynecologic surgery. JONATHAN WILSON
Amy Reed and Hooman Noorchashm pictured outside of their home. A machine used on her fibroids spread what was yet an undiagnosed cancer. JONATHAN WILSON
Hooman Noorchashm and Amy Reed in March 2014, after she was found to have an aggressive cancer following use of power morcellation. The Food and Drug Administration now warns against the procedure in almost all cases.
Photo Gallery: Married doctors turn personal tragedy into patient-safety crusade

Reed was not as smitten with the intense, ambitious Iranian American - at least, not at first.

"He asked me out a number of times," she remembered, smiling at him as they sat at the kitchen table in their modernized 18th-century farmhouse in Yardley.

"I said to my roommate: 'He kind of drives me nuts, he's so persistent. But watch, I'll probably wind up marrying him.' "

Today - two doctorates, two medical degrees, and six children later - the couple are immersed in a pair of crusades that require every bit of persistence, knowledge, and grit they can summon.

Urgently, yet methodically, they are experimenting with immune therapies to try to save Reed from leiomyosarcoma, a ferocious uterine cancer that has spread through her body despite repeated surgeries and chemotherapy.

"The irony has not escaped us that we both did our Ph.D.s in immunology," said Reed, 42, an anesthesiologist. "We speak the scientific language and are uniquely poised to fight this."

At the same time, they continue to push the U.S. Food and Drug Administration to outlaw the gynecological surgical device that likely worsened her prognosis by spreading her cancer. They have effectively sidelined use of the device by lobbying politicians, regulators, journalists, medical groups, hospitals, and by mobilizing women in Reed's straits. Noorchashm, 43, a cardiac surgeon, leads the charge, issuing scathing emails - shared with the media - and writing impassioned blog posts, including for Philly.com.

Their lives are full of anguish, sacrifice, but most of all, love.

"People use the expression 'peas in a pod' [to describe relationships]," Reed said. "We always say we're more like rocks in a bag. We bang around so much that all the rough edges are worn away."

Kindred spirits

They were not an obvious match.

Reed, who grew up in Bucks County in a big, boisterous clan, was valedictorian of her Catholic high school, Villa Joseph Marie, in Southampton.

Noorchashm was born in the United States while his parents were Penn graduate students. But he spent his childhood in Iran amid the upheaval of the revolution and Iran-Iraq war. The family got out and resettled in Upper Darby when Noorchashm was 14.

Chubby, feisty, and fresh-off-the-boat, he was so miserable in high school that his father pulled him out and enrolled him in classes at Penn. Technically, Noorchashm is a dropout with a GED.

Despite their dissimilarities - and his family's initial opposition to the union - Reed and Noorchashm found that they were kindred spirits. They married in 2001.

"Hooman and I agree on the big things - families, approaches to raising kids, and money and faith and politics," Reed said.

They agreed they wanted a big family, and had five of their six children - four boys and two girls, ages 3 to 14 - by the time they completed their medical residencies at Penn in 2011.

That's when Noorchashm got a prestigious cardiothoracic surgical fellowship at Harvard-affiliated Brigham and Women's Hospital in Boston. He saw it as a step toward the pinnacle of academic medicine; she saw it wrenching her from her support network in Philadelphia, particularly her mother, three younger sisters, and grandmother.

Reluctantly, she made the move and was snapped up at Beth Israel Deaconess Medical Center, also part of the Harvard system. As she feared, Noorchashm worked marathon hours and was hardly home.

In 2013, barely a year after the birth of Ryan, their sixth child, Noorchashm took a faculty position at Harvard Medical School. It required six months of training in lung transplantation - at Duke University, in Durham, N.C.

He left for North Carolina in September, leaving her with the children and the nanny.

"To be alone in winter in Boston, during all the holidays - I thought it was completely unfair. We were barely on speaking terms when he left," Reed said, the memory still rankling.

Adding to that stress, for months she had been having such heavy uterine bleeding that she became anemic.

Noorchashm got her a consultation with a top Harvard gynecological cancer specialist, who reviewed her scans, biopsies, and medical history. He concluded that she had fibroids, benign growths that are the most common reason for hysterectomies.

Only after her cancer diagnosis did they learn that there is no reliable preoperative way to distinguish fibroids from leiomyosarcoma.

Reed asked her doctors about having a traditional, cut-open-the-abdomen hysterectomy, which removes the uterus in one piece. On their recommendation, she opted in October 2013 for a minimally invasive procedure, done through small incisions, to reduce blood loss and shorten recovery time.

She said no one informed her that an electric morcellator would be used. The device, approved by the FDA in 1995, resembles a drill with rotating blades at the tip. It was inserted into her abdominal incisions to chop up her uterus; the fragments were then sucked out.

In that process, it hurled chunks of tumor, spreading the undiagnosed cancer.

A week later, Reed learned that the lab analysis had revealed cancer. Noorchashm flew home from Duke that day.

The couple's priorities, ambitions, and trust in their own medical profession would never be the same.

"It radically changed me on so many levels," Noorchashm said. "I had a tremendous amount of anger at my colleagues. I decided there was no way in hell that what they're telling me happened to my wife was going to happen to other women."

Making a bad outlook worse

Leiomyosarcoma is so aggressive that even when women are diagnosed while the cancer is confined to the uterus, about half die within five years, National Cancer Institute data show.

But experts, including those at Brigham, now acknowledge that morcellating the cancer makes the outlook even worse.

Noorchashm has been relentless in exposing and publicizing the dangers - and decrying what he calls the "unethical," "negligent," "outrageous" actions of Brigham's executives, the FDA, gynecology leaders, device makers, and more. Recently, he has expanded his crusade to address fundamental flaws in the medical-device approval system.

Penn immunologist Michael Cancro, who taught the teenage Noorchashm and became a fast friend, said: "He doesn't pull punches in terms of stating things as they are. It can be confused as abrasive. Most of what he says is factual."

The impact has been huge. The FDA now warns against power morcellation in almost all cases; it estimates that the risk of spreading an undetected sarcoma during hysterectomy or fibroid removal is about 1 in 350 - not 1 in 10,000, as gynecologists formerly asserted.

Johnson & Johnson has withdrawn its leading morcellator brand from the market. Most insurers have stopped covering it. Hospitals have abandoned or restricted its use, and made informed consent a requirement. The FBI and the Government Accountability Office are investigating why it took 20 years for regulators to warn of the risks.

More than 300 women or their families have come forward to claim that they were harmed, and dozens have filed lawsuits.

Three women have written directly to Reed to say they refused power morcellation after reading about her, and turned out to have sarcomas that were removed intact.

"We're not at all glad this happened to us, but lives have been saved as a result," Reed said.

As for her own life, she and her husband are trying everything they can think of, which means defying the normal slow lockstep of clinical research.

Five weeks after her diagnosis, they went to Washington for an experimental treatment in which heated chemotherapy was pumped into her body cavity for 90 minutes. Surgeons there also removed uterine fragments, her gallbladder, ovaries, and abdominal cavity membrane. Then she had weeks of conventional intravenous chemotherapy.

Nonetheless, about a year later, the cancer began coming back. Scans showed it in her lower spine in February 2015, and then in her lung, pelvis, and thigh over the next 10 months. In each case, she had surgery, radiation, or both.

In November, the couple, working with colleagues at Penn, began trying to make her immune system attack the cancer.

First, Reed received Rituxan, which kills B cells, a type of white blood cell that normally helps the body fight infection but turns malignant in certain blood cancers. In Reed's case, even if her B cells are not cancer-causing, they might work better after being wiped out and allowed to grow back - "rebooting the B-cells" is Noorchashm's term.

Reed also has had three rounds of Opdivo and Yervoy, expensive new immunotherapies that work by removing an immune system brake that various cancers exploit to avoid attack. Because the drugs aren't approved for sarcoma, they are being prescribed "off-label" and the couple are paying out of pocket.

They were reluctant to talk publicly about this unorthodox effort, partly because it's unproven, risky, and expensive, but also because they don't want to raise false hopes for others.

"We don't know if it will work. We hope it does," Noorchashm said. "We just don't have the luxury of time to wait for clinical trials."

Especially in their dark moments, they draw strength from one another.

"When bad news comes my way, I would just go upstairs and cry and think the worst," Reed said. "He's always: 'We're going to deal with this and move on.' And when he gets caught up in thinking 'This is really bad,' I calm him. So we complement one another."

That does not mean they are in denial.

"It forces you to be honest," she said. "We say to the kids, 'We're going to take out the cancer.' And they say, 'What if it comes back?' And I say, 'It might.' They say, 'Will it kill you?' I say, 'I don't know,' which is the truth.

"I say, 'That's how we're made. We all die. But we're fighting to do everything we can.' "

mmccullough@phillynews.com

215-854-2720@repopter

Marie McCullough, Staff Writer

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