From: rburke on
I have a friend recently diagnosed with uterine leiomyosarcoma, a
relatively aggressive myometrial sarcoma with an incidence of one in
four to six million per year (rare enough that most oncologists may not
see one in a career). The tumor was discovered after a hysterectomy
made necessary by sustained bleeding thought to be caused by benign
uterine leiomyomas. The particulars of the pathology report were as
follows:

- uterine leiomyosarcoma
- 9 cm diameter
- myototic count > 20 per 10 HPF
- marked vascular pleomorphism
- leiomyoscarcoma confined within myometrium
- negative for endocervical or uterine involvement
- extensive lymphovascular permeation by sarcoma cells, including
permeation into the cervical lymphatics

My friend has just returned from an appointment with a gynecological
oncologist who, quite frankly, was a p----, and an uncommunicative
p---- at that. His opinion, which he offered breezily before shooing
the patient and her husband from the office, was that he believed the
surgeon had removed all the affected tissue during the surgery, and
that no further treatment was warranted. The sarcoma in question often
metastasizes to the liver or lung, so frequent monitoring would be
required. There was a twenty percent chance of a recurrence within 3
years.

First, as far as I understand, the hysterectomy performed for patients
with leiomyomas is typically subtotal and does not include a
salpingo-oophorectomy, whereas the treatment for uterine leiomyosarcoma
does -- TAH plus BSO. I'm surprised no BSO is planned.

Second, the recurrence rate even with stage I tumors I understand to be
closer to sixty or seventy percent between eight and sixteen months,
even with the TAH plus BSO. Due to the hugh incidence of recurrence,
the five-year survival for stage I tumors varies between only forty and
sixty percent, depending on whom you ask. The rates drop off
precipitously for later-stage tumors, falling to twenty to zero
percent. (On the other hand, the numbers are so small, the stats may
not be very reliable).

At any rate, doesn't the oncologist's opinion seem unreasonably
optimistic, especially considering the pathologist's reference to
lymphatic involvement? I've urged her to seek a referral to a sarcoma
specialist, which she's now done, but I'd like to help her arm herself
with as much information going into to appointment as possible, so any
further input would be gratefully received.