Confused about new morcellation guidelines/restrictions

There are a multitude of surgeons out there...yours took a chance and I'm glad it worked out for you.

Amy

I do know that what has happened to Amy and other women is unacceptable.
We need the ability to biopsy tumors before surgery ever happens so that women have all available options.
Fibroids are extremely common and we are void of any reliable and safe treatment for them. And a hysterectomy is not a cure or treatment. It's merely a bandaid.
And now it's a very bad bandaid. Women are being harmed because of a lack of solid information. We should know if cancer is present or not before surgery.
How in the world can you make a choice without all the facts? It's like driving into an intersection with blinders on.
Amy, you will certainly be in my thoughts and prayers.
Like you, I want better health care for all women too. This will affect our daughters and granddaughters. They deserve better options than we have today.
I'm fibroid free today but I know that can change. It would be nice to have other options than the ones I chose.
I'm just not sure where we need to start.

Just wanted to chime in to say there are others adversely impacted by morcellation of uterine sarcomas besides those with LMS. It disturbs me somewhat when statistics are quoted that only reference LMS, or indicate the risk is for postmenopausal women or only women with rapidly growing "fibroids". It's like the risk of ESS, UES, etc doesn't exist. Granted the risk is even smaller than LMS but if you're in the unlucky minority you no longer care how small that risk was after morcellation has spread cancer cells throughout your abdomen and pelvis.

Amy, just wanted to mention that your campaign prevented a woman I "met" on a uterine sarcoma forum from having morcellation for which she will be eternally grateful. A friend gave her an article after which she told her doc she didn't want morcellation. Her doctor poo-poo'd it but followed her wishes. After her diagnosis he humbly told her she owed a debt of gratitude to her friend and in turn to you. You will probably never know how many lives you have and will impact in this way.

@Backhome and Ambrosia- thank you for spreading the word. Stories of the woman you met Ambrosia keep me going, especially after the weekly calls I get from women who STILL are being victimized (two women the week before last). So unnecessary,so heartbreaking.

Best to you all.

Amy

This topic is a controversial one with strong emotions on both sides of the aisle. It is completely understandable that those who are a statistic will have exceptionally strong opinions about a subject. That is human nature.

There are many treatments and procedures which doctors and patients must weigh and balance the needs and the health benefits with the risks.

As an example: The stats for penicillin can be alarming. An article in the Cleveland Clinic Journal of Medicine reports penicillin causes 500-1,000 deaths in the US each year. Further research indicates 10% of Americans are allergic to this drug. Yet because this drug is so highly effective it is still widely used today.

But no one suggests we ban the manufacture and usage of penicillin.

Some facts to consider in a bigger picture on this issue:

• Around 600,000 hysterectomies are performed in the United States each year.
• Morcellation is used in 11–13% of hysterectomies, or in 110–130 for every 1,000.
• 1 in 1,000 women with fibroids, or 0.1%, will be found to have uterine leiomyosarcoma (ULMS).
• 1 in 1,000, or 0.17% will die from hysterectomies for a benign reason.
• 1,600 of 52,630 women diagnosed with cancer will have a type of uterine sarcoma.
• 8,600 women will die from GYN cancers in 2014.

As you see: Morcellation is not the enemy. Cancer is the enemy.

Rather than ban morcellation, we need to advocate for better diagnosis and treatment of cancer, specifically uterine sarcoma. Irregardless of morcellation, prognosis is poor for any type of uterine sarcoma, even when diagnosed at its earliest stages. It also has a high recurrence rate. So rather than fight a surgical technique, we need to attack the enemy--cancer. We need more research to determine how uterine sarcoma can be diagnosed sooner and treated more effectively.

I am closing this thread now as the original poster has not returned to participate in this discussion and the discussion does infringe on several TOS guidelines. Additionally, each side has clearly stated their thoughts and concerns and given opportunity to voice their opinions.

Thanks for a great discussion. My best to each of you for a healthier tomorrow.

P.S. If anyone would like to start a new discussion regarding their own decisions for their own surgery, please feel free to begin a new topic.

P.S.S. (Edited to add: I was browsing websites this morning, May 14, 2014, including SGO (Society of Gynecologic Oncology), ACOG, AAGL and then into some Medscape articles. I think its very helpful that the president of SGO states the position regarding morcellation this way.

From Medscape The Morcellation Controversy: A Timeline April 24, 2014

April 2014: SGO President Barbara A. Goff responds to The Lancet editorial, pointing out that "morcellation allows a procedure that would have needed an exploratory laparotomy to be done via minimally invasive methods." Unlike with open surgery, minimally invasive surgery carries less risk of blood loss, surgical-site infection, and venous thrombosis, and reduces length of stay and postoperative pain, she notes.

According to Dr. Goff, "weighing the risk of these common and sometimes deadly complications to the 0.1-0.25% risk that morcellating a fibroid uterus will result in spread of a leiomyosarcoma should be considered, especially given that these sarcomas have a very poor prognosis even if they are removed intact."