Without Accurate Information, People with Uterus’ Cannot Give True Informed Consent

…my cancer biopsy came back clear, this is not unusual for uterine leiomyosarcomas

Two years ago I had a D&C to biopsy a growing fibroid.

That biopsy came back as begin.

The biopsy was wrong, but it wasn’t discovered until my hysterectomy two months later. It turned out that is was actually a 7.5cm Uterine Leiomyosarcoma(uLMS) tumor.

I was stage 1B.I have 54-76% chance of still being alive come August, 2029.

You see, “According to the Foundation for Women’s Cancer(FWC), diagnosing uLMS prior to surgery is notoriously difficult because standard imaging such as ultrasounds or biopsies, cannot reliably distinguish between a benign fibroid and a malignant sarcoma.“¹

That’s one of the most terrifying aspects of Uterine Leiomyosarcoma diagnosis journeys: how hard it is to diagnose EVEN WITH BIOPSIES prior to tumor removal.

If my surgeon had took that all clear biopsy report and run wild with it (as too many well-educated surgeons end up doing), and if my surgeon had cut up my 7.5cm tumor to make removing it easier, I would have instantly gone from stage 1B to stage 4.

Statistically speaking, I may well have already been dead by now if that decision had been made.

“Many uterine leiomyosarcomas present as metastatic disease after having been misdiagnosed as a fibroid, explained Kristen N. Ganjoo, MD, and although there are treatment options for these patients, an early and accurate diagnosis is the only chance of cure.

“Unfortunately, it’s really hard to diagnose patients based on an ultrasound or magnetic resonance imaging. If you do a biopsy, you may biopsy a part that is nondiagnostic,” said Ganjoo, an associate professor of medicine at Stanford University Medical Center. “Usually, the main key is rapid growth in the abdomen. If a patient has an ultrasound, and then 6 months later, it has doubled in size, then it’s a uterine sarcoma.”²

Dr. Kristen Ganjoo is a leading uterine leiomyosarcoma expert. She treats patients and conducts research at Stanford University School Medicine in California. She also treats patients in Washington state via telehealth support.

“Some patients who are presumed to have fibroids will undergo a procedure called morcellation, where the uterus is broken into parts and then they are suctioned out. At the end of the day, the [surgeon] discovers that it’s really a leiomyosarcoma after everything has spread in the abdomen. Of 350 patients who have a fibroid, 1 will have a leiomyosarcoma. Of those patients who have a morcellation, almost all patients [have disease that] spreads and recurs.”

“Although the FDA expressed specific concerns about power morcellation, it is important to recognize that all morcellation techniques for hysterectomy or myomectomy have the potential to spread unsuspected cancer cells in the pelvis and abdomen.”³

Nearly two years into this new life as a uterine leiomyosarcoma patient, I’ve seen car too many victims of morcellation die. This includes many women who had their tumors cut up inside a bag but then THE BAG BROKE during removal!!!

To put this into very clear terms, 5 year survival rates for uLMS are:

Stage 1: 76% chance of being alive 5 years later

Stage 4: 12% chance of being alive 5 years later.

Given these differences in 5yr survival rates, I absolutely believe no surgeon should be cutting up what they believe to be fibroids. Why is morcellation still happening?!?

Just because uterine leiomyosarcoma is rare within the population as a whole, these surgeons need to be keeping at the front of their minds that:

“Of 350 patients who have a fibroid, 1 will have a leiomyosarcoma.“²
The difference in 5 year survival rates is simply too large to be playing Russian roulette with peoples’ lives like this.

I mean, honestly, I question if 1-350 would be considered an acceptable risk if these patients were men. Medicine needs to stop being lazy and remove fibroids whole and intact, with clean margins. They should be acting as if all fibroids are uLMS because the consequences when they don’t are devastating.

Or, at the very least, explain clearly to patients the 1-350 odds of a fibroid being uLMS AND that 12% 5 yr survival rate risk if a bag ruptures during removal.

Don’t say things like: “incredibly rare” when the odds are 1-350.

Oh, and make sure they also explain that uLMS “an aggressive tumor that is challenging to treat because of its resistance to standard therapy, as evidenced by high rates of both recurrence and progression.”4

Because knowing your true odds of a fibroid being a rare and aggressive cancer that is resistant to current treatments are 1-350 and that if it spreads your odds of surviving for any length of time are tragically very, very low, makes for a more informed consent than what patients are being gaslit with.

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