My diagnosis is undifferentiated endometrial sarcoma. In shorthand, uterine sarcoma. There's a similar kind known as endometrial stromal sarcoma, and some people use the terms interchangeably while others do not. I believe the difference is in the grading - UES is considered high grade, while ESS is considered low grade.
This page from the National Institutes of Health says: "Survival in patients with UES (previously called high-grade endometrial stromal sarcoma) appears to be related to the extent of residual disease after initial surgery and would suggest the necessity for aggressive cytoreduction as a main modality of treatment."
Most uterine cancers are carcinomas, and are in the lining of the uterus, the endometrium. These are, apparently, fairly easy to treat and have good outcomes, particularly in the early stages.
The sarcoma I have is a very rare and more difficult kind, since it's in the muscle tissue of the uterus. Here's a site from the National Cancer Institute that has some good explanations in simple terms.
As cancer grows and spreads, it's diagnosed as being in different stages. I guess that can be a bit tricky, assigning someone to a category. And there are two different scales that I've found. This one is from the National Cancer Institute, a part of the National Institutes of Health. It lists four different stages, each one with subsets. http://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq It's based on how far the cancer has spread beyond the initial point.
UPDATE JUNE 2016 - But there is also the FIGO staging system, from the International Federation of Gynecology and Obstetrics. http://www.cancer.org/cancer/uterinesarcoma/detailedguide/uterine-sarcoma-staging . This one is also based on location, but seems more precise.
I was told initially, at my August follow-up visit about a week after surgery, that I was at stage IIIB. The pathology report dated 8/7/15 is rather scary to read. But later, the pathology report has an addendum dated 12/15/15, with diagnosis FIGO stage IIB. So I'm not sure which stage I'm really at, or if it matters that much, really.
For sarcomas of the uterus, here's a general breakdown:
| Stage 1 | Cancer is limited to uterus | |
| 1A | In the endometrium (lining) only, or only partway through the myometrium (muscle) | |
| 1B | Over halfway through the myometrium | |
| Stage 2 | Cancer is in uterus and the cervix | |
| Stage 3 | Cancer is in uterus, cervix, and other parts of pelvis | |
| 3A | Fallopian tubes and ovaries | |
| 3B | Tissue around the uterus | |
| 3C | Lymph nodes are affected | |
| Stage 4 | Cancer has spread beyond the pelvic region | |
| 1A | Evident in bladder or bowel walls | |
| 1B | Into abdomen, lymph nodes in the groin, and possibly beyond | |
My cancer was discovered at stage 3B - which is pretty late in the game. Fortunately, lymph nodes were not involved yet. Once it gets into the lymph system, it can spread throughout the body. Cancer can also spread through the bloodstream.
The staging is based on the pathology report, once tissue samples are sent to the lab and studied under the microscope. My pathology report was released 3 days after surgery, on August 7. I got it the next week, at a clinic visit.
The surgeon makes decisions on how much tissue to remove once he's opened up the body and can see what's going on. At that point, the staging isn't known.
In my case, the surgery was a total abdominal hysterectomy with bilateral salpingo-oopherectomy - removal of uterus, cervix, fallopian tubes, and ovaries, through a long vertical incision in the abdomen. The surgeon, Dr T, also removed one, or just a few, lymph nodes. Paperwork from the insurance company indicated that the greater omentum, which is like an apron of tissue that hangs down and covers the stomach and small intestines, was also removed, although when I spoke with Dr T later, he said it had not been taken out.
The surgery was complicated by the cancer wrapping around the ureter, the tube leading from the kidney to the bladder. The ureter was compressed. A stent, a temporary hollow plastic tube, was placed inside the ureter to give it structure as it healed. That was removed September 21 in a short surgical procedure. I was glad to have it taken out. It didn't hurt, but sometimes it did rub the bladder enough to annoy me.
Updated October 10, 2016
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