Stumbled across an article in the New York Times vitally, and I use that word literally, important to women dealing with potential surgery for fibroids or more.

There are quite a few comments there by Hooman Noorchashm, the doctor who started the raising of the alarm. He is facing losing his 41-year-old wife, also a doctor, the mother of their six children, because her OB/GYN did what has become a standard surgery in that specialty: laparoscopy with morcellation of the fibroid. Far faster recovery, tiny little scar, back to work much sooner, what’s not to love.

But.

Dr. Noorchashm, a surgeon himself, points out that morcellation is not done by any other surgeons in any other specialty–and for good reason: it not only breaks up the offending tissue and sucks it out, but it also spews it widely within the abdomen, and if there is any cancer lurking in those cells it’s suddenly everywhere and in the bloodstream.

Which is what happened to his wife. Her fibroids could have been removed intact and sent to pathology and instead she was suddenly an instant Stage IV leiomyosarcoma patient.

Leiomyosarcoma, he points out, is incurable and a fast death.

It is also what my mother-in-law died of a year ago. She was told that maybe when they did her hysterectomy years ago they missed a few cells which turned into ovarian cancer, but they found that that wasn’t quite what she had.

Going by the commenters on that article, it is believed in the leiomyosarcoma community that that misdiagnosis as ovarian accounts for quite a few of the cases of what MomH had, which our family was told was a highly rare disease.

Maybe not so much. Dr. Noorchashm says it’s one in 400 to 1000 of the fibroid cases that go to surgery and that every one of those cases could be treated by intact removal. Or have it go like his wife’s case. The cells might lay dormant for years and then suddenly go wild or they might get right to it, but either way it is not treatable at that point and invariably fatal. He is agitating, with good cause, for morcellation to simply cease to be done. Size of incision is not the purpose of surgery, he points out.

There’s a lot more in there about the economics of the device manufacturers and of some hospitals’ requirements that doctors do so many to keep their privileges to use those machines. There is even a morcellation procedure that encases the tissue but it is much less often done.

Patients are typically not told that the surgeon intends to do morcellation during their procedure nor what it means. A patient commented that it was not on their Informed Consent list. Patients need to know. If the doctors aren’t changing their methods to keep up with the new information, the patients need to stand up for themselves and ask and then tell them no.

And to think two or three years ago I was in an OB/GYN’s office debating whether to have fibroid surgery. We decided to see if a little more aging would take care of it, and it did. I had no desire to have my abdomen opened up yet again even a little bit and the gynecologist wasn’t pushing it.

I had no idea….

I’m trying to help get the word out to make sure that others do.