What Are the Chances?

It was supposed to be a simple operation at one of Boston’s greatest hospitals. It turned out to be anything but. When the medical system failed Amy Reed and Hooman Noorchashm, the couple embarked on a journey that was part vengeance, part whistle-blower, and part David and Goliath. The fight changed their lives…and saved thousands more.

Amy-Reed-Hooman-Noorchashm

Hooman Noorchashm, pictured at home with his wife, Amy Reed, holds newspapers with stories about Amy’s struggles at Brigham and Women’s. / Photographs by Colin Lenton

Hooman Noorchashm would not shut up.

The emails went sailing out from his laptop at all hours of the day and night, to physicians, to government regulators, to legislators, insurers, hospital administrators, reporters, anyone who might possibly listen to what he had to say. His messages were inflammatory, harsh. Court records show that he accused his fellow doctors of being corrupt, unconscionable criminals. The emails seemed a bit…unhinged. Those he was sending them to tried to stop him. They threatened legal action, then went to court. They described his messages as “disturbing and threatening.” They called him a security threat.

None of that mattered to Hooman. He was on a mission. He had something to prove. At one of the finest, most reputable healthcare facilities in the nation, Brigham and Women’s Hospital, a physician had used a medical device known as a power morcellator to mince and suction up his wife’s uterine fibroid—a type of benign growth experienced by more than half of all women. Unbeknownst to the doctor or to Hooman’s wife, Amy Reed, a rare cancer known as a leiomyosarcoma was implanted in her uterine wall. The power morcellator minced it up along with the fibroid, its spinning blades tossing bits and pieces of the cancer throughout her abdominal cavity.

Since that initial operation in 2013, Amy has had four more operations to remove new tumors generated by the morcellator’s “upstaging” of her original cancer. The makers of power morcellators and the doctors who favor the devices insisted that the chances someone like her had such a tumor were minuscule, negligible—one in 10,000. Those chances sound pretty good.

But Hooman and Amy have since learned that for women suffering from fibroids serious enough to prompt surgery, the odds are more like one in 350. That’s not a chance you or I would be likely to take.

The overriding duty of a physician is so well known that it’s a cliché: First, do no harm. But Amy and Hooman say her oncologist knew about the greater risk when she was operated on. That there were other women like her—including one who lay dying at Brigham and Women’s while Amy had her initial operation, performed with the same device that had caused that other woman’s cancer to spread. And that because the device made the operation easier and faster and cheaper, and all of medicine today is geared toward easier and faster and cheaper, no one was looking for problems that device might cause.

Amy’s a doctor herself, married to a doctor—one who worked in the same hospital where she was operated on. If she and Hooman weren’t told the truth about what might happen to her, what are the chances you or I would be? How blind is our faith in physicians, and how daunting our inability to know what questions to ask? That’s the bone that’s stuck in Hooman’s craw, and it’s what turned his email campaign against morcellation into an all-out war against the wobbly, opaque healthcare system that endangers us all.

 

When Hooman Noorchashm first heard of morcellation, he didn’t know how to spell it. “I used an S,” he says as he sits at the kitchen table of the couple’s home in Morrisville, Bucks County. It’s an ancient farmhouse in the midst of a newer subdivision, surrounded by lawn and trees. There’s spaghetti on the blacktop driveway from where their kids—they have six—spilled it on their way to feed leftovers to the chickens in the family chicken coop. Their youngest, three-year-old Ryan, threw up last night; he’s cranky from a virus. Amy settles him in with a cartoon in the family room, part of an addition whose construction she just oversaw.

Hooman, who’s 43, and Amy, 42, weren’t living here when she was diagnosed in 2013; they were in Needham, where they moved after graduating from the University of Pennsylvania’s medical school and completing their residencies at HUP. She had her fibroid operation at Brigham and Women’s 13 months after Ryan was born. “I was still breastfeeding,” she recalls. She’d been miserable from pain and bleeding ever since his birth. On the basis of a colleague’s referral, Amy went to see gynecological oncologist Michael Muto, who examined her, diagnosed a fibroid and not cancer, and sent her on, in turn, to his young colleague Karen Wang, a Brigham-based gynecological surgeon. Amy and legal say that Muto and Wang talked Amy out of the traditional open-abdomen surgery she expected—“I said, ‘Cut me open! My stomach is a mess, I have six kids’”—in favor of a less invasive laparoscopic procedure. (According to court records, Muto and Wang contest this allegation.) Recovery will be quicker, Amy recalls Muto saying. We’ll get you back on your feet. She says no one mentioned a morcellator then. (Muto has admitted he didn’t discuss morcellation at her initial consultation. He and Brigham declined to be interviewed for this story on the advice of counsel.)

Hooman, a cardiothoracic surgeon, was, like Amy, teaching at Harvard Medical School, and working at Brigham and Women’s. When she scheduled her fibroid operation, though, he was in North Carolina, learning to transplant lungs. “I had to go to Duke for six months,” he explains. “It was like playing in the NBA. Harvard wanted me trained at Duke. They sent me there.”

“I was not happy,” Amy puts in. “I didn’t think it was necessary.” There she was in Needham, far from her mother and sisters back in Bucks County, with six kids, the oldest 12, the youngest Ryan. For months she’d been feeling low. Her obstetrician noticed that she was anemic and put her on iron and birth-control pills. They didn’t help. In late summer, she went back to that doctor and said, “Something’s wrong. I’m not normal.” There were MRIs, biopsies, ultrasounds, and then the operation that was supposed to fix it all.

At the kitchen table, Hooman pulls up the notes from Michael Muto’s initial meeting with Amy. He has reams of documents and data about Amy’s case, about morcellators, about leiomyosarcomas, on his laptop. He does most of the talking on this bright December morning. Amy flits around the kitchen, dusting, sweeping, straightening, only alighting at the table from time to time. “When Muto met with me,” she tells me, “he said, ‘You do not have cancer. You don’t need me.’” She sprays organic cleaner on the glass tabletop. “We’re doctors,” she says tightly. “We don’t say ‘never’ unless we’re sure.”

Hooman flew home from North Carolina for Amy’s fibroid operation. It went smoothly. But she didn’t want him to go back afterward. She’d been through so much in Boston. The kids got sick; she’d been alone. “I told him, ‘I would never ask this of you,’” she says. After all the years of training, after hundreds of thousands of dollars in student debt, there was finally light at the end of the tunnel: their teaching jobs at Harvard, his position at Brigham, hers at Beth Israel Deaconess Medical Center. But she couldn’t quarrel with his dedication. That spring, she’d been the critical-care attending on duty the morning of the marathon bombings. She’d treated the victims—and then the wounded bomber, Dzhokhar Tsarnaev, after he was brought in. Do no harm.…

Amy’s operation was on October 17. About a week later, she got a call from Karen Wang, the doctor who’d performed her surgery. “Are you alone?” Wang asked. The pathology report on her fibroid had come back. It showed an unusually aggressive form of cancer—leiomyosarcoma. Wang said she was sorry. Then Muto contacted Amy at Wang’s request. Muto said Amy would need another operation; they’d have to take out her ovaries.

Amy called Hooman in North Carolina. He was in the midst of an operation when his phone started buzzing and beeping. It didn’t stop. “Who’s calling you?” a nurse finally asked. He scrubbed out and took the call. He knew what leiomyosarcoma was. His phone rang again—it was Karen Wang. “I said, ‘Did you get it out in one piece?’” Hooman says. “I assumed—the way you treat any mass, you take it out in one piece. You never chop it up. She said, ‘No, we morcellated it.’” That was when Hooman first wrote the word down, with an S. He told his colleagues he had to leave and headed for the airport.

“It wasn’t part of my working knowledge,” he explains. “I knew doctors used to do that to spleens to get them out. So I sort of knew what we were up against.” He knew, too, that he was done at Duke. In the cab, he called Michael Muto. Muto told him that what had happened was very, very rare, Hooman recalls. That Amy was just so unlucky.

If the sarcoma had been taken out whole, her five-year survival rate would have been 50 percent. With the cancer morcellated, it was between zero and 20 percent. “Basically,” says Hooman, “they created a man-made Stage 4 cancer.”

 

  • Margaret Perritt

    What a fascinating article. My heart goes out to Amy and Hooman. I think we are all being used by the big business that is medicine today. I would like to be able to follow Hooman’s work as he continues to fight this fight!

  • Elly

    I had gyn surgery at the Brigham around the same time Amy did. I also suffer from a “rare” condition. In my experience, the Brigham relied so strictly on algorithms that it failed to consider essential information, resulting in treatment that caused unnecessary harm and suffering, treatment that put me at unnecessary risk. But, as with Amy, they were willing to take that chance, to sacrifice my safety on the altar of efficiency and standardized procedure.

    When I complained, I was assured that I’d received “standard” care. But, standard care can be inappropriate care for people with rare or unusual conditions. This is, most certainly, a human rights issue. Just as some children receive an individualized education plan, atypical patients deserve an individualized treatment plan. Hoorman, you are my hero!

    • Mr Smith

      If only it was a mistake. The secret history of the modern medical establishment as a secret eugenics system needs to be exposed once and for all. We used to have a working system of plant based medicine, now we have a secret agenda to lower the worlds population on the down low, and life expectancy has dropped. The entire modern medical establishment operates on fraud. There are many known cures for cancer, including intravenous vitamin C drop.

      • SuzieTampa

        Yes, the aliens also discovered the cure but the government is keeping it a secret.

        • Mr Smith

          Your fantasies about aliens have little to do with well the well documented facts i’m referring to. Everyone google eugenics -> War isn’t just waged with tanks and smart missiles.

          A a Nobel peace prize was given out in the 40’s for the discovery that sugar causes cancer. People do your own research, and don’t be intimidated by name-callers. It’s all the left has. Name calling.

          • SuzieTampa

            I was being sarcastic about aliens.

          • Mr Smith

            Correct, your “sarcasm” is an attempt to ignore my point while pretending I’m insane or that I believe in Aliens. It’s called name calling, whether direct or implied. It shows the maturity level you have. Any comments on the facts?

            Any comments on the fact that intravenous vitamin C drip is known to cure cancer and outlawed as a cancer cure in America? Any comment on the fact that the FDA has blocked several other known cures as well?

            Any comments on the fact that your “conventional” treatments for cancer – surgery, radiation, and chemotherapy have been used almost exclusively by allopathic physicians for the past 100 years with very little long-term success? Even though it is clear that even the US government admits that radiation and chemo both cause cancer, these therapies continue to be used with little concern about the new cancers that they cause. Why are diets that cure cancer, vitamins that cure cancer, herbs that cure cancer and even certain pharmaceuticals that cure cancer all being kept from the patients Suzie? Any comment you can make on any facts? Or are the Aliens telling you that facts are very inconvenient for political shills and they should be avoided? You will reap your own karma for playing the harm-for-profit medical game against our families and communities.

  • Ellis Avery

    The same thing happened to me, except in addition to the morcellation procedure for the fibroid (which turned out to contain leiomyosarcoma tumor cells), I was also on an immunosuppressant drug called Humira. http://www.amazon.com/Fear-Kindle-Single-Family-Tooth-ebook/dp/B014JRV6XO

    • Mary Riley

      I also have LMS although mine was on my IVC. I was also on Humira. I’m not on Entyivo. I just purchased your kindle essay and can’t wait to read it.

  • Noah

    Yikes. Thanks for a quality story, Sandy. Even if tragic.

  • Hooman Noorchashm
  • Fawn Tilton

    I have been following Amy and Hooman’s progress since it first began and I signed the Change.org
    petition. I thoughtfully read every article sent to me and have cheered
    on any success that has been made through their efforts to educate the
    masses and expose the sickening truth behind some medical institutions
    lack of information to patients and then trying to sweep it under the
    rug or simply dismiss the severity of their actions. Ive become
    emotionally attached to Amy and Hooman, watching, waiting and hoping for
    the end of morcellation and a cure for Amy to be able to be the woman
    that she is, but without the pain.. without the suffering. This article
    was absolutely wonderful. It explained it all. It took me from the
    beginning to the here and now and I can only say that my hopes for their
    success have only deepened. What a love to have. What an amazing
    family. I continue to pray for all that is good to come from the
    countless hours of devotion of trying to keep other woman safe and to
    make the people responsible for not being true to their oath’s of
    “First, do no harm”. Someone in that position should never be afraid to
    stand up against what they know in their hearts to be wrong. I know you
    will persevere. Thank you for all of your sacrifices.

  • joknee4

    An important story that needs to be shared for many reasons. Amy and Hooman’s story is an example of why it is so important to be informed and ask questions when faced with serious medical issues. As a nurse, I often wonder how patients without a support person or knowledge of healthcare can effectively understand and know that they are receiving the best care and treatment. They often do not. I admire their tenacity in fighting the giant, determined to make changes so other patients do not suffer the same consequences.

    I will continue to follow Amy’s story and hope and pray she can continue her fight and live to raise her family.

  • SuzieTampa

    The magazine needs to correct its reference to the 2012 study co-authored by Dr. Muto. Sandy wrote: “the Brigham doctors found unexpected sarcomas in 10 out of 1,091 samples of tissue from women who’d undergone uterine morcellation.” This is incorrect. The doctors looked at 1,091 samples from 2005-2010 and found 7 fibroids
    that were unusual; 3 tumors of uncertain malignant potential; 1 endometrial stromal sarcoma and 1 leiomyosarcoma. The doctors also looked at morcellation done elsewhere and found metastatic disease in 4 of 7 LMS cases. Of those 4, 3 died. The other 4 survived, as did the women who had something other than LMS. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506532/

    • Pauline Hynes

      Suzie while it seems as if I am trying to war with you potentially, I am not. I don’t know you… I know of you. But your comments here are somewhat shocking to me and appear to constitute an attack on Amy and Hooman for reasons I do not understand.

      Back to this comment, did you even read the study you referenced or are you hoping other readers do not follow the link? Because the conclusion of this study, that Dr Muto participated in we will remind everyone… was this:

      “While additional study is warranted, these data suggest uterine morcellation carries a risk of disseminating unexpected malignancy with apparent associated increase in mortality much higher than appreciated currently.”

      Dr Muto should hand over his license and cease to practice. To have recommended Amy Reed for morcellation with her symptoms was lazy, unethical and negligent.

      I will leave you with a quote by Albert Camus because it is entirely appropriate for this cause and this particular discussion:
      “Always go too far, because that’s where you’ll find the truth”

      • SuzieTampa

        Thanks for the Camus quote. I’m a big fan of his and it is just what I needed to keep fighting. Of course, I read the Seidman study and was at CTOS when it was presented. I completely agree with its conclusion. I was fine with the Sarcoma Foundation of America’s recommendation for a moratorium on morcellation until we had more information. But I’ve opposed Hooman’s campaign of misinformation, and I want women to have choices once they are fully informed of the risks. He and his supporters have done a great job of ruining my reputation with LMSers even though I’ve advocated on their behalf since I was diagnosed in 2002. They also send me very nasty personal emails that I’ve had to block. I just got back from the meeting of the Society of Gyn Oncology, where I always advocate for more research and for ongoing research, such as on BRCA2 mutations, to include women with gyn LMS. No one else but the Sarcoma Alliance & SFA has seen fit to send an advocate there. (We always pay our own way, however.) Btw, while I was there, I took one day to spend with a young women who has been struggling with LMS for 6 years. I helped her get a second opinion from an expert or else she would be dead now. I do peer-to-peer work and let LMSers call me any time of the day or night for support. I will continue to do that even though you and other Hooman supporters attack me.

        • Pauline Hynes

          Suzie you may not know it but I have read much of your writing, enjoyed it and admire your tenacity. Your own struggle with LMS, as you’ve written about it, is somewhat mind boggling and a testament to the human desire to prevail.

          I don’t consider myself one of Hooman’s supporters (I support my soccer team, rugby team, my kids’ teams). But I believe very much in the cause Hooman has taken up.

          There are distinctions that need to be made as you argue for the right to morcellate… and I don’t see you make those distinctions. That is why I am compelled to comment here. There will always be someone who will have had a sniff of the morcellation debate, and it has passed them by at the time because it seemed of no consequence to them.

          At the time they may need medical advice and treatment in future, it is important that the ramifications of one treatment option over another remains clear in their head. That is what this is about. Drawing attention to this very important issue and making the distinction in people’s minds. Being ambiguous will allow other lazy, unethical and complacent doctors to do harm in future. There will always be some of those in the field. I’ll say it again Dr Muto should hand in his license. To have participated in the study and to morcellate someone with Amy Reed’s symptoms is unconscionable.

          You can argue the merits of morcellation, it is your right. But as you do, you need to counter balance the inherent dangers that will still exist. I do not know of a single woman with a troublesome fibroid that would willingly have it minced inside her body. Even with the most benign of growths… pathology is now made that much harder.

          The only defense I’ve seen (by you) in favour of morcellation is that minimally invasive surgery may reduce the risk of death for an obese patient and will improve recovery time. That’s fine, but give that patient the choice. Morcellation should never be solely described as minimally invasive – they are not the same thing.

          I wish you well but I disagree strongly with your points and I don’t really see why you need to attack Hooman and Amy. One would think we would all be on the same side.

          • SuzieTampa

            Thank you for the comment on my writing. Sharon Anderson, exec dir of LMSdr, emailed me and Sarah Salem-Robinson, an LMSdr volunteer, in March 2014. She said she and Gilles Frydman, owner of ACOR.org, wanted to have a conference call “to come up with some more effective strategies for ending this morcellation campaign, rather than trying to strong-arm the other parties.” Of course, at this time, Sarah, Sharon and I were friends.

            Gilles suggested the first priority was properly informing women of the risks, followed by a moratorium.

            I talked to Mark Thornton, MD, PhD, co-founder of the Sarcoma Foundation of America about joining us. Mark used to work for the FDA. Unfortunately, Gilles doesn’t like Mark. Nevertheless, Mark submitted a paper to the FDA calling for a moratorium until we had more information on the risk/benefits of morcellation.

            The FDA black-boxed power morcellators, but that fell short of a moratorium. Let me underline this point: If we had all worked together for a moratorium, there would be no power morcellation right now.

            Mark made a joke to me and another person about how Hooman was enlisting people to attack and ostracize dissenters. That person told Hooman, who then called Mark “an industry front.” I was the only one willing to challenge him, suggesting this might be libel because Mark and the SFA get no money from morcellator manufacturers or gynecologists. Hooman then called me an industry front and began his personal attacks on me. His private attacks have been so nasty that I vomit sometimes.

            I would love to see the attacks stopped and all of us find a way to work together, despite our differences in opinion.

            I agree that minimally invasive surgeries often do not use power morcellation, although sometimes the doctor cuts up the fibroids or uterus by hand to remove them if they are too large. This may also be done to get a huge uterus out of the vagina. Some women will not get the benefits of MIS or vaginal hysterectomy without their uterus being cut into. Benefits are not just for obese women.

            But I hope you understand that Hooman and Sarah would not give a choice to the obese woman you mentioned. They want to ban morcellation for all women.

            If I ever fail to make distinctions on morcellation, I’m fine with someone pointing that out to me in a respectful manner and then I’ll be happy to go into detail. When I attend the Society of Gyn Oncology meetings, I definitely discuss the finer points of this argument with doctors.

            I believe so strongly in informed consent that I can’t let misinformation go unchallenged. What if a woman without cancer is so scared of morcellation that she has an open surgery, but her wound separates and it gets infected and she dies? This is rare, but it happens. I’ve gotten septic. I also had to have emergency surgery to keep my intestines from bursting due to a blockage caused by scar tissue from my open surgeries. A good friend of mine had her would separate and get an infection at home. She hates hospitals so much that it took a lot to persuade her to return. A local cancer patient who believed in holistic medicine had a very serious infection but had a fear of hospitals. I told him that I would come to his house and stay by his side in the ER for as long as it took. These things happen to real people.

            I don’t understand your argument on Dr. Muto and Amy Reed’s symptoms. There is no correlation between pain, bleeding and size of uLMS vs. fibroids. She had a biopsy, ultrasound and MRI. Studies have found that this combo can point to irregularities sufficient that doctors do an open surgery in many cases. The problem is that they are not foolproof, and thus someone like Amy can be hurt.

        • Mr Smith

          You’re on the wrong side of a political agenda and you know it. Shame on you.

  • SuzieTampa

    With the exception of a few quotes from Amy, this is a one-source story, with the author making little attempt to get other perspectives. It illustrates the harm done by the media, as noted in Dr. Lisa Rosenbaum’s recent article “N-of-1 Policymaking — Tragedy, Trade-offs, and the Demise of Morcellation.” http://www.nejm.org/doi/full/10.1056/NEJMms1516161

    Hooman is quoted as saying, “There was no concept of individual rights” in Iran. But Hooman doesn’t want women to have the right to choose morcellation, even if they are fully informed of the risks. The author suggests that no one would take a risk of 1 in 350. If that were true, then Hooman would not need to keep pushing for a ban. It would be sufficient to inform women of the risks. But we know that some women will still opt for morcellation even when informed of risks.

    The author then states: “His life experience taught him to honor dissent.” This made me laugh out loud. He attacks anyone who disagrees with him. This includes leiomyosarcoma (LMS) patients like me as well as women who have had fibroid surgery. He has encouraged his supporters to attack us as well. He has compared me to people who collaborate on atrocities throughout history. I would not feel safe in the same room as him, and I don’t blame the Brigham doctors for fearing what he might do. He is the very picture of a
    disgruntled former employee.

    The author echoes his assertion that morcellation (always) leads to stage 4. Sadly, about half of the women with uterine LMS will see their cancer spread. About 40% of the women with stage 1 LMS will die within 5 years.

    After her bladder tumor was removed, we don’t know if power morcellation caused Amy’s subsequent metastases. My LMS metastasized within 6 months of my initial surgery, for
    example.

    The FDA’s figure of 1 in 352 sarcomas found after surgery
    for suspected fibroids includes low-grade endometrial stromal sarcoma. The figure for leiomyosarcoma only is 1 in 498. http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm424443.htm

    There are two major problems with the FDA’s review. It included only studies in which at least 1 LMS was found. If a hospital had 1,000 surgeries with no LMS found, that wasn’t figured in. Some of the studies also were done at a time or place that had a broader definition of LMS, including cases that might not be considered cancer today. Subsequent reviews have gotten different rates.

    Many of these women had open surgeries. For example, the
    Wright study looked at 232,882 hysterectomies for suspected fibroids, with only 15.7 percent of the women undergoing power morcellation. http://jama.jamanetwork.com/article.aspx?articleid=1890400&resultclick=1 This study could not separate LMS from more curable cancers. But it confirmed that the risk increases with age. At age 40, Amy did not have a 1 in 498 chance of having LMS – her risk was lower, according to the Wright study and others.

    Biopsies, ultrasounds and MRIs also catch many sarcomas before surgery. Having these procedures also lowered the chance that Amy would have LMS. http://www.uptodate.com/contents/differentiating-uterine-leiomyomas-fibroids-from-uterine-sarcomas

    This Boston Magazine article seems to accept as truth what Hooman and Amy say their doctors told them, although it notes the doctors dispute that. It says Hooman and Amy “weren’t told the truth about what might happen to her.” It insinuate that the doctors lied or knowingly withheld information. What seems more likely: A patient misunderstands what her doctors say, or a doctor deliberately misleads one of his colleagues in order for her to have a risky surgery in which he has no financial benefit?

    Your article suggests that Amy’s doctors persuaded her to have a minimally invasive surgery. The Wall Street Journal, on the other hand,
    quoted Amy as saying she wanted a less-invasive procedure that would get her back on her feet more quickly. That makes sense considering she had six children, including a baby; a husband out of town; and a promising career.

    The author and Hooman criticize the faith that people put in doctors. But the author puts her faith in two doctors — Hooman and Amy — without interviewing others. Hooman and Amy give their opinions on what women with fibroids should do, and the “MD” after their names leads some people to have faith in what they say. At least initially, for example, Hooman pushed the Sugarbaker Procedure even though we don’t have studies proving it is more effective than less toxic procedures for LMS. Unlike many of Dr. Sugarbaker’s patients, this procedure was not Amy’s last hope. According to the Washington Post, “about 1 percent die during or shortly after the operation, and about 12 percent experience serious post-operative problems.” https://www.washingtonpost.com/lifestyle/style/surgeon-performs-controversial-cancer-surgery-named-after-him/2012/11/25/c8ad7ab8-29da-11e2-bab2-eda299503684_story.html

    Morcellation is not necessarily faster or easier than an open abdominal surgery, as the author claims. But it can be cheaper for hospitals because patients spend less time there. The increase in its use has been driven by women who want less pain, less time in hospitals, shorter recovery times, and lower risks of infection, wound separation, etc.

    If all fibroids must be taken out whole, some women who might have had a minimally invasive procedure will need an open abdominal
    incision. Some doctors predict more women will die from open hysterectomies than will be saved from banning power morcellation.
    This is not an argument of hurting a minority to benefit a majority. This is an argument over what policy changes will hurt the most women, and whether women should have surgical options.

    • Hooman Noorchashm

      Again, Ms. Tampa (i.e., Siegel), morcellation is not the same as minimally invasive surgery. It is maximally invasive surgery through small incisions….Make no mistake.

      And, by the way, the specialty of OB/Gyn is the same one that does not accept a one 300-400 mortality risk from uterine rupture and hemorrhage in the case of VBAC (i.e., Vaginal Birth after C-section). Women who have had C-sections, are typically not offered a natural birth for that reason. Why? because of “immediacy of consequence”. That is, if the one in 300-500 women whose cancer are at risk of being upstaged were dying right in front of these doctors (as can happen with uterine rupture), they would not accept the risk. But because these doctors do not see the horrific oncological consequences of their practice first-hand, they were ok with it.

      Make no mistake, Ms. Siegel, you are falling on the wrong side of history and many see you and your ego with clarity…..

      • SuzieTampa

        Yes, they do see me. That’s why even sarcoma oncologists who want morcellation banned hug me and try to cheer me up after your attacks. Ask Brian Van Tine, the head of sarcoma at U of Washington in St. Louis, what he thinks of your personal attacks on me.

  • SuzieTampa

    The author of this article also misunderstands the issue with mammograms and other cancer screening tests. It’s not simply about saving money. The National Cancer Institute explains that there are consequences of false negatives, false positives and surgeries on women who might never have had a problem. http://www.cancer.gov/types/breast/mammograms-fact-sheet#q3

    Back to morcellation, the article says “no one was looking for problems that [the] device might cause.” But that’s contradicted by the mention of the 2011 and 2012 studies. The Connective Tissue Oncology Society named uterine leiomyosarcoma the sarcoma of the year for 2013. Its annual meeting featured a morcellation video, with a doctor arguing that bags should be used. Meanwhile, doctors were researching the issue and working on improving bags and surgical procedures.

    By the way, surgeons remain free to cut up suspected fibroids by hand, just as they did before power morcellators.

    I want power morcellation used less frequently, and only when women are fully informed of the risks. I want better bags developed to use with morcellators. And I want more research to distinguish leiomyomas (fibroids) from leiomyosarcoma. But if we care about fully informing patients, we can’t let Hooman’s narrative be the only one we hear.

    • Hooman Noorchashm

      Ms. Siegel, you narrative is being heard loud and clear by many.

    • Pauline Hynes

      Suzie what you neglect to focus on is the fact that there is NO conclusive diagnostic pre-op that will guarantee whether the patient is dealing with a leiomyoma or a leiomyosarcoma. So the whole morcellation debate becomes irrelevant. IF you even suspect you are dealing with a leiomyosarcoma, morcellation is negligence, malpractice and these doctors should be stripped of their licenses. It is lazy and unethical.

      As you make the case for morcellation in a bag, you need to start advocating and raising money for the right kind of pre-operative diagnostics. To try and defend what these surgeons did with Amy Reed’s symptoms is unconscionable.

      • SuzieTampa

        I agree that no woman should undergo morcellation if cancer is suspected. Nor do I think bags are foolproof. I’m supporting a doctor who is working on a test to differentiate fibroids from uLMS. Other doctors are working on other tests and procedures.

        Imagine if we had gotten a moratorium and then worked together to find ways to diagnose uLMS ahead of time.

    • Pauline Hynes

      I will also note that you neglect to mention the presentations at CTOS 2013 that state morcellation of leiomyosarcoma upstages the diagnosis for the patient and states that morcellation only makes sense if there is a clear nonLMS diagnosis before surgery. If you want to present yourself with journalistic credibility you need to report accurately on all the presentations, the discussion and then present your argument.

      • SuzieTampa

        Were you at CTOS in 2013? I was, and I worked with Sarah and Sharon Anderson to contact doctors who would help us reduce the risks. And I did report on the findings at CTOS 2013. CTOS has never issued a position on morcellation, and members have differing opinions on whether it should be banned for all women. The speakers at CTOS 2013 did not call for a ban. They called for more research. The problem with the argument is that many women benefit from MIS, and despite what Hooman and Sarah say, some tumors are too large to be taken via MIS or mini-laps. Members of CTOS, SARC (Sarcoma Alliance for Research Through Collaboration), the Society of Gyn Oncology and the American Association for Cancer Research accept me as an accurate writer on sarcoma. AACR praised my article on their first-ever sarcoma conference. The outgoing president of CTOS and the incoming president follow me on Twitter, as do other sarcoma and gyn oncologists.

        • Sarah

          Suzie if you understood surgical medicine like Hooman and I who are medical (surgical) professionals, then you would know common knowledge that very large fibroids should not be removed by morcellation. I’ll try to explain…the fibroid as an occupier of space will distort the anatomy, and thereby will increase the chances of severe injury/mortality of the patient. In short, morcellating a large fibroid is a really bad and risky decision. Hence, most GYN surgeons will not morcellate a fibroid larger than 16 weeks for this reason, and ACOG agrees with this decision.

          In addition, morcellation in an obese patient is difficult and risky, I don’t hear you taking about this. A big risk of morcellation is trocar placement, as vessels cannot be illuminated and trocar placement is essentially
          “blind”, hence risking hemmorage that cannot be seen (as in open surgery ) to be fixed. In addition, obese patients have the highest risk of “open” conversions. And speaking of “open” conversions the process of recording end results in medical data, if morbidity or mortality resulted, I would surmise, like most, that the data (which some misguided GYNs point to) would be recorded as a complication of an abdominal hysterectomy….perhaps the reason why data on the risks of open procedures in the medical literature might be overinflated and misrepresented??

          Suzie as a long time patient advocate, I’m glad you point patients to getting a second opinion ( as is a tradition that all of LMS’ers who do so on ACOR and closed facebook support groups). Yes, there is no doubt it is very important to hear other opinions of sarcoma treatment and be comfortable as a patient of the treatment),

          …But, on the issue of morcellation, you are not an advocate of patient health and safety. I suggest Suzie, that you stick to journalism (what you do best), but leave the medicine and medical advise to medical professionals.

          • SuzieTampa

            Hooman isn’t a gynecologic or oncological surgeon, and you are/were a gyn physician’s assistant. Using your logic, couldn’t a gyn oncologist tell you that you don’t understand the issue and should stick to what you’ve been trained to do?

            I hope neither of you are giving medical advice online to people who you have not seen as a patient. The problem arises, for example, when Hooman initially pushed Dr. Sugarbaker’s HIPEC procedure, even though some people die of that.

            I never give medical advice. I write on sarcoma. Most health journalists are not doctors. Unlike most, however, I run my writing by oncologists before publishing to prevent errors.

            I never said that laparotomies, especially on obese patients, are without risks. When you talk about ACOG opposing morcellation of a large fibroid, are you talking about a myomectomy? I was referring to large fibroids being morcellated as part of a hysterectomy. Please give the citation for ACOG’s statement, and I’ll be more careful in my wording in the future. Here’s a link in which the ACOG prez mentions the benefits of power morcellation in an obese patient, especially if they have co-morbidities. Aetna also mentions it. http://www.medscape.com/viewarticle/837932#vp_2 http://www.aetna.com/cpb/medical/data/300_399/0304.html

          • Sarah

            For the record, I was only speaking about hysterectomies.

            My logic holds. You, Suzie, have not worked in the operating room on a patient. Whereas Hooman and I have, so we have an understaning the situation. And I’ve discussed the issue with a gyn/onc ( Dr. Pizarro) in a medical forum, and he complimented me on understanding the surgical issues.

            You wrote, “I never said that laparotomies, especially on obese patients, are without risks.”
            Remember your quote that morcellation should not be banned because it was best for some women, “ie. obese women”.
            Yes, I agree Suzie, you never said morcellation wasn’t risky, but you also never said it was NOT risky. Perhaps not in journalism, but with speech leaving out ( the risks) is misleading for the listener/reader.

            Yes,enough is enough.
            You are confusing women if they take your word under the guise of “a (surgical/morcellation) advocate” as medical advise.

          • Hooman Noorchashm
    • Freda Hopkins

      It seems to me that those warnings you cite are actually in line with Hooman’s narrative, just not as robust.

      • SuzieTampa

        Yes, LMS advocates knew that cutting up LMS was harmful, at least since 2007. In 2013, before Amy Reed had her surgery, I was trying to get reporters to cover the issue at the 2013 CTOS presentation. I failed and was initially thrilled by the WSJ articles. But I broke with the campaign when it began putting out misinformation, such as telling women that morcellation = stage 4. Or, suggesting that people who get metastases months after their surgery can say for certain that it was caused by morcellation and that they now had the same chance of survival as someone who had metastases at their original presentation. Statistics on survival are based on your original stage. Sarah and my other attackers are welcome to ask Dr. Martee Hensley, a renowned expert on uLMS, to explain how survival statistics are figured when they attend their LMS conference next month. I just hope they don’t attack her when she tries to speak science to them.

        • Hooman Noorchashm

          Ms. Siegel, enough is enough. No one is attacking you personally. I am sorry you were unable to garner the Press’ attention in 2013. Believe me, we wish you had been successful when you tried.

          But what is puzzling, and disturbing, is your total change in position on morcellation. Remember you are a self-proclaimed sarcoma advocate, not a morcellation or GYN advocate – unless you’ve changed your place. Unfortunately, supporting the continuation of this practice is simply incorrect for any sarcoma advocate or expert.

          But more importantly, you allegation that we are spreading misinformation has really been vetted very publicly and in the professional press. Suffice it to say, the incidence of occult LMS is nowhere near the one in 10,000 previously assumed – not even counting other types of occult or missed malignancy.

          Finally, your insistence that you are being personally attacked and your very specific actions against Amy and I (both publicly and professionally) are quite damaging and defamatory. With your own personal experience with LMS, we would have thought you’d veer in the direction of wisdom, not insanity….Alas.

          In any case, I am quite certain that none of the professionals whose names you invoke on a routine basis would appreciate how you are using them…Not a single sarcoma oncologist in this country, or overseas, is of the opinion that morcellation of a potentially malignant tumor inside a patient’s body is justified. And I am very certain you will do extensive damage to your own credibility if you continue going around and quoting reputable oncologists incorrectly.

          Ms. Siegel, enough is enough.

          HN

    • Hooman Noorchashm

      The reader will judge Ms. Suzie Tampa (i.e., Siegel) for him or herself.
      Here it is, in the interest of fairness to “the opposition”: http://www.tbo.com/list/news-opinion-commentary/siegel-questioning-the-campaign-against-power-morcellation-20140709/

  • Amy Regen

    I have witnessed personally the death of thousands of women from this cancer. Why don’t these lives matter? Why is it ok for them to die? This is about corporate greed and money as usual. Unfortunately these recent attacks on Hooman and Amy have become somewhat personal. I also find that shameful. Shame on all who do not value the lives of all of the women that died and are dying because of all the money that will be lost by no longer doing morcellation procedures. It is appalling.

    • Mr Smith

      Bottom line, the modern medical establishment came out as a trojan horse – It’s designed to kill us, and it’s called eugenics. The power of the propaganda machine was used to replace a working, natural medical system based on plant medicine with a modern techno-game of eugenics inducing “treatment” designed to lower the human population on the down low.

  • Sarah

    “Choice” exercised by women to control their own reproductive destiny is not the same as the ability to “choose” morcellation. As morcellation of a mass breaks 1)all rules and ethics of medicine and 2)the backbone rule of surgery; to assume a mass is malignant until otherwise proven different. Morcellation, whether power or manual, or the concept to morcellate a mass is overall just Bad Medcine.

    Very few women experiencing heavy bleeding and pain can wrap their head around, what some call “choice” (even if working in the medical field), making a sound medical decision about the best surgery. Instead,most all women trust their GYN’s opinion as their surgeon.

    Putting LMS aside, southern California’s Kaiser’s surgical data released a couple of years ago, reported 1:67 patients will have a GYN cancer during a hysterectomy.

    It’s a wonder why GYN’s still fight this idea of so called “choice”.

    To morcellate an unknown tumor is unconscionable and just bad medicine. Doing so seeds and spreads cancerthe opposite of the hippocratic oath to “do no harm”. As it does so indiscriminately, it could happen to your mother, daughter, sister or your best friend.

    • Freda Hopkins

      Well said.

    • Hooman Noorchashm

      Sarah,
      In fact it is an atrocious corruption in thinking to equate choosing morcellation to a woman’s right to “reproductive choice”.

      Those who claim that bad and potentially deadly medicine in women’s health ought to be a matter of “choice” – as though they are speaking of “reproductive choice – are guilty of dishonoring the achievements of feminism and of women’s reproductive health.

      They are simply confused, or worse, deranged.
      HN.

  • Hooman Noorchashm
  • Lucia Ganapes Cundy

    I appreciate Dr Hooman Noorchashm’s efforts to expose the shocking use of morcellation. One need only understand the most rudimentary facts of cancer and metastasis to realize that morcellation is a stupid, stupid way to remove a tumor. My own experience with cancer (my husband’s melanoma and prostate cancers, my own uterine cancer) inform my position relative to SuzieTampa (Suzie Seigel.) Having read a the various threads of comments this article generated between she and Dr Noorchashm, I side firmly with Dr Noorchashm. Ms Siegel derisively points out to Dr Noochashm that he is not an OB/GYN nor an oncologist, and therefore should not be advocating in the matter of ending the use of power morcellation for the removal of uterine tumors and fibroids. Nonetheless SHE has no problem advocating for its retention, despite the fact that, unlike Dr. Noorchashm, she has none of those qualifications either, nor is she even a doctor! Ms Siegel argues that Dr Noochashm steals women’s “hope” and frightens them when he claims that morcellation creates an incurable, man-made Stage IV cancer. Ms Siegel…the issue is not about what it’s CALLED. The issue is about what actually happens with morcellation, and that is, potentially malignant cells are scattered within the abdomen, circulatory system, etc, and the cancer is thus upstaged as a result of the procedure. Women whose tumors/fibroids were morcellated need to know this. They don’t need this to be sugar-coated. They need the truth so that they DO have hope in the form of a plan to monitor and treat their bodies given their increased risk of metastasis. They do not need the head-in-the-sand form of hope that your writings advocate. To suggest that women need that sort of hope in lieu of the truth is demeaning and paternalistic; it vastly underestimates women’s abilities to cope with a potentially dire reality.

    Ms Siegel also argues, despite statistics that 1/350 morcellation a result in metastasis,that morcellation should be a choice that informed women have available to them. She argues for morcellation and against full abdominal incision, which, evidently, has a much lower risk of complication and death. My grandfather was bled after a massive stroke in the mid-1940s and died soon thereafter. Should bleeding as a viable treatment option be retained just in case some patient feels it’s risks are preferable to other treatments for stroke? Certainly not. Bleeding is no longer practiced because it was found to be ineffective, and in fact, harmful, and no amount of ballyhoo about “patient choice” will change that fact about bleeding, nor, clearly, about power morcellation.

    Ms Seigel, you vociferous advocacy for the retention of morcellation, and your venomous comments directed at Dr Noochashm, are curious indeed, given the facts. I understand that you have battled the same cancer as Dr Noorchashm’s wife, Dr Amy _____, and that you too had a tumor removed via power morcellation. Is it possible that your opinion about morcellation is driven not so much by the facts as it is by your personal emotional need to validate the decisions you and your doctors made regarding your own treatment? I’d urge you to give that some careful thought. Because the facts are not on your side. History will not be on your side. As I wrote in opening, this is clear to someone with only the most rudimentary understanding of metastatic cancer.

  • http://www.christinenegroni.blogspot.com/ Christine Negroni

    This is a fascinating article and an important one. The article does not, however, fully explore the fallacy of the question posed by the headline and in the summary, “what are the odds?”. Cost/risk analysis is used in public health issues (as it is in aviation safety, my specialty) but here the size of the risk was hidden. If false statistics are used in the analysis, the analysis can’t help but be flawed.

  • LK

    Thirteen years ago I had what was called a problematic uterine fibroid. As bad as the symptoms could be, something had changed and I just didn’t feel well. When my ob/gyn and family doctor wouldn’t take me seriously, I change doctors. That decision save my life. Even though the fibroid showed no signs of cancer and all tests were normal, because of my concerns the new ob/gyn didn’t want to risk complications with a laparoscopic hysterectomy so we went with a surgical procedure. If I’d stayed with the original doctor I probably wouldn’t be writing this. The biopsy came back positive for leiomyosarcoma.
    When I read Amy and Hoomans’s story in 2014 it broke my heart. Then I got angry. How could anyone not get angry? She should have been given the same respect and caution that I was given. Even if it appears as though there is no risk and the fibroid “appears” to be normal these morcellation procedures with fibroids should be banned. I was so lucky. When I was diagnosed very few oncologists even knew how to treat it, but mine knew about a new treatment that had just been approved and fought to get it for me. I had the doctors I needed, and that is why I’m still here. Isn’t that what the bottom line is here? It’s life, not money. At least that’s what it should be. How you could feel otherwise and sleep soundly at night is beyond me.
    My thoughts and prayers are with Amy and Hooman. If anyone can outsmart this horrible form of cancer, I think they can.