A Letter To Her Royal Highness, The Princess of Wales, Catherine Middleton: On Uterine Sarcomas and Dr. Amy Josephine Reed
Your Highness,
On March 22, 2024 I watched you announce your cancer diagnosis to the world, stunned.
I was, of course, struck by your courage and grace in making this careful announcement. But, even more importantly, as I had been peripherally following the story of your medical treatment, I was struck by the extremely high probability that you may share a common diagnosis of uterine sarcoma with my late wife, Dr. Amy Josephine Reed. I state this not only as a physician and surgeon, but also as husband to my late-wife whose medical care I was involved with on an extremely granular level.
In 2013, at age 40, my beautiful wife and the mother of our 6 young children, was diagnosed with an aggressive uterine sarcoma, known as Leiomyosarcoma (LMS). She publicized her battle with cancer, as you have, in order to protect other women like her. I shall hope that you will find her story, as it was extensively covered, globally, by the mainstream media.
Amy underwent a hysterectomy operation at Harvard Medical School’s Brigham and Women’s Hospital, for what was assumed to be benign symptomatic uterine fibroid disease. Tragically, this erroneous assumption in diagnosis not only led to a delay in treatment of what turned out to be an aggressive uterine LMS— but it also led to the use of a medical device, known as a power morcellator, which spread her aggressive sarcoma, and upstaged it to an incurable stage 4 cancer.
In the aftermath of being tragically harmed by her delayed diagnosis and dangerous surgery, Dr. Amy Josephine Reed, waged an unprecedented global public health campaign to protect other women. You should know, as a matter of fact, that Amy’s patron saint in this fight was St. George — with many friends dubbing her Georgina of Yardley — whom I know many in the Royal Family and the UK draw inspiration from.
In her campaign, Amy was fortunate to have the broadcast power of the press helping her speak to the public — most notably the Wall Street Journal and The New York Times, among a vast number of other media outlets in the US, UK and elsewhere.
Amy’s campaign aimed to protect the one in 200–400 other women like herself, with symptomatic uterine fibroids, incorrectly assumed by gynecologists to be benign, from harm.
In so doing, she had two main objectives:
- To restrain the dangerous practice of indiscriminate “morcellation” of uterine fibroids by general gynecologists, and regulate the use of the gynecological medical device, known as a “Power Morcellator”, which spreads uterine cancers in women’s bodies,
- To force the gynecological surgery specialty to stop baselessly assuming, preoperatively, that symptomatic uterine fibroids are benign tumors — when in truth one in 200–400 harbor dangerous cancers that are only discovered AFTER the fibroid operation.
The upshot of Amy’s message to gynecologists and women suffering from symptomatic uterine fibroids was simple and definitive: That symptomatic fibroids carry a one in 200–400 probability of being sarcoma. That sarcomas are aggressive cancers. And, thus, that any delay in urgent surgical removal, or improper surgical handling of these tumors (i.e., morcellation), caused by an “Assumption of Benignity” about fibroid tumors, significantly increases the morbidity/mortality risk to the one in 200–400 women with fibroid tumors containing sarcomas, including LMS.
Please note that where gynecologists make a preoperative “Assumption of Benignity” about uterine fibroid tumors, until proven malignant AFTER the operation, ALL other surgical specialties assume ANY tumor to be a potential cancer, until proven otherwise. In other words, gynecologists, irrationally, do the opposite of what all other physicians do in the clinical management of uterine fibroid tumors.
Your highness, I want you to know that uterine fibroids are the ONLY tumor in the human body treated carelessly as such, by the gynecological specialty. This terrible and irrational management of fibroid tumors by gynecologists has two harmful effects on women with uterine sarcomas: 1) it delays proper and timely diagnosis and resection of the cancer, and 2) it leaves the door open to unsafe surgical handling of fibroid tumors leading to spread of the cancer (i.e., morcellation). Both these effects impose an unforgivable morbidity and mortality risk on the women whose “fibroid” tumors are, in fact, sarcomas.
By the time of Amy’s passing in 2017, her public health campaign had accomplished the first of the above two goals almost definitively: The use of Power Morcellator devices in the US and globally was substantially curtailed, and the United States Food and Drug Administration published stern and strong “blackbox warnings” about the indiscriminate use of Power Morcellators in fibroid surgery.
However, at the time of her death on the evening of May 24, 2017, to her extreme frustration and mine, her campaign’s second goal of inducing gynecological surgeons to retreat from their baseless and dangerous PRE-OPERATIVE “assumption of benignity” about uterine fibroid tumors was NOT accomplished.
As the public scrutiny abated with the Wall Street Journal and New York Times wrapping up their coverage of Amy’s campaign in 2017, gynecological associations in the US and UK stopped any futher stringent changes to their standards of oncological diagnosis and management for symptomatic fibroids in women.
In 2017–2018, when Mr. Jon Kamp of the WSJ informally checked in on me at our home in Pennsylvania, I told him that with the press and gynecologists stopping their focus on the unsafe gynecological management of symptomatic uterine fibroids, and the pre-operative “Assumption of Benignity” about fibroid tumors, it may be that a change towards reason and safety would only come in gynecology when a person of extreme influence and importance to the public is harmed by this irrational and dangerous surgical practice pattern in gynecology.
Your highness, I sincerely hope and pray that your cancer diagnosis is not a uterine LMS, like Amy’s, or any other type of fibroid associated sarcoma. I also truly hope that I am wrong in my assessment.
But, I know with near certainty that if your cancer is a uterine sarcoma, the memory of Dr. Amy Josephine Reed’s public health campaign pushed your surgeons at The London Clinic in the direction of performing an en bloc open resection at the time of your operation. All gynecologists in the US and UK know Dr. Amy Josephine Reed’s story. This could mean that, unlike in Amy’s case where her uterine LMS was mechanically spread in her abdomen, your putative uterine sarcoma would not have been mechanically spread. As such, I am hopeful that your adjuvant chemotherapy will be more effective than was hers in stemming the tide of cancer recurrence.
Of course, in this scenario, your gynecologists’ preoperative assumption that you were suffering from benign fibroid disease, still would have delayed your diagnosis/treatment — and, thus, increased the risk of your putative sarcoma metastasizing and harming you. This latter possibility in your case, is directly related to the second unaccomplished goal of Dr. Amy Josephine Reed’s campaign: that is, to restrain gynecologists from their baseless pre-operative “Assumption of Benignity” and their low index of suspicion about uterine fibroids being cancerous.
In writing this letter to you publicly, I know that the world does not know your exact cancer diagnosis at this moment — and I certainly don’t either. So only you know if my recognition and analysis of your situation and diagnosis is correct. But if it is, I know with certainty, as did Amy, that you, the Princess of Wales, have the power and influence to protect and save the one in 200–400 women with symptomatic uterine fibroids carrying sarocomas, perhaps like yourself and Amy, from harm by the pre-operative “Assumption of Benignity” made by a vast majority of general gynecologists, about uterine fibroid tumors.
Your highness, in spirit of St. George, do help Amy Josephine Reed continue to defend and protect the one in 200–400 women with symptomatic uterine fibroids from harm by this manmade monster, which is The Gynecological “Assumption of Benignity”, pre-operatively, about uterine fibroid tumors.
With respect and with prayers for your recovery and healing from cancer.
Hooman Noorchashm MD, PhD
Yardley, PA.
USA.
