Thursday, September 11, 2008

Gynecological Oncologists Welcome Sarcoma Advocacy

Gynecologic oncogists welcomed the Sarcoma Alliance to their 39th Annual Meeting in March in Tampa. For the first time, the Sarcoma Alliance had a table in the exhibit hall, and our organization and its mission were listed in material distributed by the Society of Gynecologic Oncologists (

During the conference I was able to talk with many physicians about sarcoma and the advocacy community. A prominent gyn oncologist thought uterine leiomyosarcoma (ULMS) was completely different from LMS outside of the gynecologic area. He had never heard of sarcoma departments at cancer centers, nor did he know about SARC (Sarcoma Alliance for Research through Collaboration at He saw no point in a gyn onc talking to a medical oncologist in a sarcoma department. Another gyn onc who doesn’t do chemotherapy had never heard of the c-kit mutation or Gleevec. One doctor was reluctant to take a pamphlet, saying there’s little that can be done for ULMS. A few others expressed sadness, and perhaps futility.

But many others took an assertive stance to sarcoma, and welcomed pamphlets, pins, pens and wristbands. A few put on ribbons or wristbands right then. A common comment was: “I’ve got a patient who will be really interested in this!” A Brooklyn doctor loaded up on merchandise, saying LMS is so prevalent in the New York City area that someone should do a study. A doctor from West Virginia said the same. I assured doctors from outside the United States that their patients could use our services if they read English and have access to the internet.

Coding for insurance reimbursement continues to be an issue. Some health-care professionals code sarcoma by the site of origin, instead of using codes for “soft-tissue sarcoma.” This can result in the denial of treatment. Another issue is aromatase inhibitors for LMS patients. Some doctors prescribe these drugs, while others await further study.

Some of the gyn oncs research sarcoma. Although the meeting’s agenda listed no discussions of sarcoma, at least 14 posters mentioned it. Following is a summary of these studies.

Radiographic Studies

Doctors at Columbia University Medical Center in New York concluded that the cost of CT scans didn’t justify their use before surgery for uterine cancers, except in high-risk cases such as sarcomas. Doctors who saw a CT before surgery were more likely to handle a patient differently if she had a uterine sarcoma. An issue for patients is that doctors may not know a tumor is a sarcoma before surgery.

Korean doctors at the Asan Medical Center in Seoul studied uterine sarcoma. “PET or PET/CT was highly effective in discriminating true recurrence in patients with suspected recurrence and was highly sensitive in detecting recurrence in asymptomatic patients.”

Predicting Outcomes

A University of Miami study found ethnicity has little value in predicting stage, grade, histology, recurrence or survival of women with uterine sarcoma.

Doctors at Stanford and the UCSF, and UC-Irvine analyzed 831 cases of endometrial stromal sarcoma. Removing or preserving ovaries did not affect survival, nor did adjuvant radiation therapy. The poster also noted: “The excellent survival in patients with grade 1 and 2 disease of all stages supports the concept that these tumors are significantly different from grade 3 tumors.”

At Baylor College of Medicine and the M.D. Anderson Cancer Center, both in Houston, doctors examined
uterine smooth-muscle tumors of uncertain malignant potential, called STUMP. They found that recurrence was more likely in younger women, and they urged more research on menopause status and the use of hormones.

Another Baylor study found that removing ovaries did not affect the survival of young women with stage 1 ULMS. It suggested surgeons leave ovaries alone if they look normal.

A ULMS study at Stanford and UCSF found metastases in the lymph nodes of 6.6 percent of the patients who had their lymph nodes removed, and those patients didn’t live as long. Removing ovaries didn’t appear to affect patients’ survival.

UC-Irvine did a 20-year review of ULMS patients and found that they were less likely to have a pelvic recurrence if they had radiation after surgery. Patients who got radiation also were a little more likely to make it to the 5-year mark, but overall, they didn’t live any longer than women who didn’t get radiation. Patients who got Gemzar plus Taxotere lived longer than those who got other forms of chemo.

This last poster underscores the need to update the uterine sarcoma pages on the Women’s Cancer Network (, which were last updated in the fall of 2006. They still mention only two chemo drugs for LMS: Adriamycin and Temodar. The site was created by the Gynecologic Cancer Foundation (, which is affiliated with the SGO. The GCF also
published the 2007 State of the State of Gynecologic Cancers. The report is geared toward initial treatment. Reading the report, a patient might not realize she needs routine imaging to check for recurrences, and if the
disease does recur, she might benefit from chemo or more surgery.

As is true for many cancer publications, “cancer” often refers only to carcinoma in the GCF report. A woman like me, with a gyn cancer in a site other than the uterus, might be confused by the list of causes, treatments, etc.

For more information on gyn sarcomas, please see my 2006 articles at:

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