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Wednesday, December 18, 2013

Husband And Wife Doctors Claim Her Fibroid Removal Procedure Spread Cancer

Amy Reed and her husband, Hooman Noorchashm, are campaigning to stop use of the "morcellation" technique to remove uterine fibroids. (Courtesy of Hooman Noorchasm)

Amy Reed and her husband, Hooman Noorchashm, are campaigning to stop use of the “morcellation” technique to remove uterine fibroids. (Courtesy of Hooman Noorchasm)

Dr. Amy Reed and her husband Dr. Hooman Noorchashm are campaigning against a standard procedure to remove fibroids in the uterus, called morcellation, in which the mass is ground up and removed in minimally-invasive surgery. They claim it spread Dr. Reed’s previously undetected cancer.

Dr. Noorchashm and Dr. Reed joined Here & Now’s Robin Young to discuss the fibroid removal technique and their campaign against it.

“You are basically taking a procedure, which puts women basically in a collision course with a stage four cancer,” said Dr. Noorchashm, noting that this is what happened in his wife’s case.

Dr. Reed and Dr. Noorchashm say they’ve brought their concerns and data about the procedure to their hospital, but the hospital has not stopped offering it.

“There are a number of examples, I think, in medicine where there are procedures or medications … where they’ve done risk analyses and showed that patients who take this medication are at increased risk for X, Y and Z and have pulled those drugs off the market just based on that,” said Dr. Reed in response.

Dr. Reed has had follow-up surgeries to remove the cancer and will soon start chemotherapy.

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Guests

  • Hooman Noorchashm, cardiothoracic surgeon at Brigham and Women’s Hospital in Boston.
  • Amy Reed, anesthesiologist at at Beth Israel Deaconess Medical Center.

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  • Jechtech

    My heart goes out to this couple. Thank you for fighting this. It is about money now and NOT about public safety as it should be.

  • me too

    Hidden uterine LMS cancers often involve healthy young women at the prime of their life. Medical institutions that allow morcellation are playing russian roulette with a women’s life,- unthinkable!
    I too, was diagnosed 1 1/2 years ago (52 y.o.) and underwent the same barbaric procedure that has now put my life in danger.

  • Nancy

    I heard this story today. One correction that I think is important is that the interviewer referenced “invasive cesarean sections” a couple of times during the broadcast. It is important to correct that the procedure the patient had was not a cesarean section which is an operative procedure done to deliver a baby. In order to avoid frightening the 1/3 of pregnant women who delivery by cesarean section, please correct this mistake. If women confuse a CS with a hysterectomy with morcellation on the basis of this error in your report, it could be a significant hazard for women and their babies.

    • Robin Young

      to be clear we said the woman chose the less invasive laparoscopy,
      INSTEAD of the more invasive surgery, like the c section.
      But it never hurts to repeat it.
      Best
      Robin

      • Julia

        Nancy’s point is that a c-section is never an alternative to a laparoscopy. You only deliver babies with a c/s, you could never deliver via laparoscopy. It is more correct to use a term like ‘open’ procedure or ‘abdominal’ when differentiating between types of gynecologic surgery. The incision on the abdomen may be the same for a c/s and an open hyst but the difference is important. You only ‘choose’ a cesarean when you are pregnant.

  • margo

    I agree that I felt the interviewer was leaning toward laparoscopic surgery despite what the doctors were explaining. I know these doctors personally, and what isn’t communicated is that they are two of the most brilliant doctors you will ever meet. Truly brilliant. They are not people who would try to garner this type of attention if it were not of the utmost importance. Their crusade is to save lives, and because of their bravery, lives will be saved.

  • Hooman Noorchashm

    Dear Robin, Amy and I thank you for this interview. I must, reiterate, that an unsafe practice is not a matter of informed consent. Minimally invasive gynecologists frequently mince up women’s uteri inside their abdominal cavity, using morcellation, simply to achieve a fast operation through small incisions. At the same time they have no definitive ability to rule out a hidden cancer; None! In this kind of situation 1 in 400-1000 women, like my beautiful wife, will have their early stage and contained uterine cancer converted to a stage 4 cancer by their well meaning gynecologist. Is this a matter of “informed consent”? I think not. Morcellation is an unsafe gynecological practice that has found a comfortable space in the practice of minimally invasive hysterectomy. “Informed consent” does not apply to a specific practice that has a 1 in 400-1000 mortality hazard. That level of risk is “off the Richter scale” for any medicine or procedure. Dear NPR audience, morcellation as practiced by minimally invasive gynecologists is a game of Russian Roulette with unsuspecting women’s lives. It is a practice that has somehow been accepted as being safe and acceptable; likely driven by the financial incentive and “comfort” built in. I suppose talking about “informed consent” when it comes to this practice could be a conversation starter…But, I hope, the voice of public reason will soon call morcellation for what it is: an unsafe “standard of care” in gynecology.

  • Karen

    Don’t they standardly do an endometrial biopsy prior to surgery, for this reason? Did hers come back negative? A very very sad situation, and I’m so sorry they are going through this.

    • Hooman Noorchashm

      No, biopsy is not routinely done and anyway an endometrial biospy would not show a uterine sarcoma, which is malignancy of the uterine wall. The fact is that mincing up any tissue inside a body cavity is very dangerous from an oncological standpoint.

      • A

        I was 48 when I had an open myomectomy at BWH in 2012. My surgical report said the largest fibroid (9cm) was morcellated intraabdominally. I am so scared now and don’t know what to do. I didn’t know a morcellator would be used for an open myomectomy. Multiple other fibroids were surgically removed at the same time. I now have recurrance and “focal nodulatity.” I wonder if morcellation seeded even benign fibroid cells. I’m not sure what to do now. I have never seen the pathology report. At my surgical follow up at BWH, no malignancy was mentioned but I was unaware at that time that a morcellator had been used at all. I only requested the surgical report in October 2013 after my local gyno ordered an ultrasound which showed fibroids and the focal nodularity.

        • Hooman Noorchashm

          Dear A, It is good to err on the side of caution. Get your path report and maybe see if your Gyn is willing to get a CT scan or MRI to make sure there’s nothing there. But there is really no need to panic. The reality is that if you’ve had an intra-abdominal morcellation of our uterus or fibroids, the chance of a cancer being present and spreading is less than one percent. That does make it too dangerous to perform, but still the majority of women will be ok from a cancer standpont, which is why the Gyns have continued performing the dangerous procedure. If I had to bet, I’d say you don’t have cancer. Now, aside from cancer, intra-abdominal morcellation can cause other “benign” problems like implantation of the endometrial lining (called endometriosis) and uterine myoma tissue (called parasitic leiomyomatosis) that can cause significant issues as well. These are not cancers but are the other reasons why morcellating the uterus inside the belly cavity is a very bad and dangerous idea. My suggestion is, don’t be “scared”, talk to your gyn and maybe get some imaging. But, please do ask your Gyn to stop doing intra-abdominal morcellation, as it costs 1 in 400-1000 unsuspecting women their lives by causing stage 4 cancer.

          • A

            Thank you so very much for your kind and thoughtful reply.

  • Mickey

    Dear Dr. Reed, I am one of those 1 in 400. I had a uterine morcellation done in 2006 and am now having recurrence of a cancer that I didn’t even know I had! I am 5 months into this nightmare and am willing to do whatever it takes to end this procedure. I am now diagnosed with Low Grade Endometrial Stromal Sarcoma (a very rare uterine cancer) that would have been contained, and probably cured had they not roto rootered the uterus and sent the pieces to spread. I feel for what you are going through. Should you need signatures or anything of that nature to complete your mission here I would be more than happy to participate.

    • Hooman Noorchashm

      Dear Mickey,
      Please enter your information at in the FDA’s MedWatch Database as soon as possible. Here’s the link:
      https://www.accessdata.fda.gov/scripts/medwatch/

      Also, consider seeking out the expertise or second opinion of Dr. Paul Sugarbaker at the Washington Cancer Institute in Washington DC for possible surgery.
      Our very best wishes,
      Hooman Noorchashm and Amy Reed

  • Hooman Noorchashm

    Please see the new statement on morcellation released by the Society of Gynecologic Oncology (SGO) to the press today:
    https://www.sgo.org/newsroom/position-statements-2/morcellation/

    This statement is somewhat encouraging in that it is the first admission by the gynecological surgery community that morcellation of the uterus causes disseminated stage 4 uterine cancer. It also is a formal admission that no definitive preoperative screening tests exist to rule out an occult cancer. However, this statement dramatically fails in protecting women from the deadly hazard of morcellation on two fronts:
    1) The statement’s wording implies that irrespective of whether or not women with hidden uterine cancers have morcellation done, the cancer is deadly. This is untrue. It is very clear from the cancer literature that there is a big survival difference between stage 1 and stage 4 cancers.
    2) The statement also continues to maintain that “informed consent” is an adequate protection against the deadly peril of morcellation. Let us be clear, there are no other examples of medicines, devices or procedures with a known and specific mortality hazard of 1 in 400-1000 that are accepted by regulatory bodies or physicians as being safe. “Informed consent” is not a safe or ethical response to the perilous hazards posed to women by intracorporeal morcellation.

    The question, dear reader, is whether the sheer magnitude of the financial/infrastructure loss incurred by the gynecological specialty is the reason that the specialty as a whole continues to accept such a high degree of hazard. We believe that it is. We hope that the FDA, the CDC or the voice of public reason will soon stop this dangerous gynecological surgery practice in the US and abroad.
    Hooman Noorchashm MD, PhD
    Amy J. Reed MD, PhD
    Harvard Medical School.

  • Hooman Noorchashm
  • Michael

    And I thought Brigham and its physicians were teaching evidence based medicine. Doesn’t seem like that since there is no evidence for anything here except random allegations. It is funny how easily we forget that when it is our family member involved. So I guess we should start changing our practice based on one patient from now on. Good example Brigham docs! Now go back performing randomized controlled trials for other patients, not your family members of course.
    Things might change of course as a usual knee-jerk reaction to the fear of liability. Really sad to see the science of medicine influenced like that through the media. And provoked by scientists themselves.
    I hope the Amy Reid reaches full recovery and feel very sorry for her health adventure. I am not sure how much morcellation is to be blamed though.

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