According to the FDA and other expert sources, as many as one in 350 women with fibroids will turn out to have Uterine Leimyosarcoma.
Uterine leiomyosarcoma(uLMS) occurs in approximately 1 in 10,000 women in the general population. When the symptoms listed below are present, uLMS is found in nearly one in 350 women with an even higher incidence in women above the age of 40.
Symptoms of uLMS vary from woman to woman and can include:
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Heavy periods
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A rapidly growing fibroid
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Abnormal vaginal bleeding
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Abnormal or mucousy vaginal discharge
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Pelvic pain or pressure
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Pain or discomfort during sexual intercourse.
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Abdominal pain or pressure
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Abdominal bloating and distention
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Change in bladder or bowel habits
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Blockage of urinary flow
Uterine leiomyosarcoma is often mistaken for uterine fibroids. In fact, in most cases, uLMS is assumed to be uterine fibroids. Fibroids, also known as uterine leiomyomas, are benign smooth muscle tumors of the uterus that affect many women. Mainly asymptomatic, fibroids are a benign condition that may not require treatment. However, fibroids can grow in size and cause the symptoms listed above. Any woman diagnosed with fibroids must tell her gynecologist to treat each fibroid as a possible uterine leiomyosarcoma tumor.
SURVIVAL RATES
For patients with stage I and II uLMS (the cancer has not spread beyond the uterus) the 5-year survival rates can be as high as 80%. In women with stage III and IV uLMS (the cancer has spread to other parts of the body) the prognosis is extremely poor. In these women, 5-year survivals approach 10-20%.
TREATMENT
Uterine leiomyosarcoma is an aggressive cancer that is difficult to treat. The only definitive chance of survival comes with adequate and safe surgical removal of the tumor. Adjuvant therapies (therapy given after tumor removal) such as chemotherapy and radiation therapy have been used to combat the disease. However, these treatments have not proven to reduce the chance of recurrence or metastases. Treatment when there is tumor with chemotherapy and radiation is poor, however the results can vary greatly. Uterine leiomyosarcoma is more chemo sensitive than leiomyosarcomas of the retroperitoneum, large blood vessels and limbs. The use of gemzar with taxotere (referred to as gem/tax) is the standard first line chemo for uterine leimyosarcoma, if surgery cannot be done. Uterine leiomyosarcoma cells have been known to remain dormant for even 15-20 years and then start to grow. Because of its aggressive nature, surveillance should be frequent (3-4 times a year) and long term (annually.)
HORMONE RECEPTORS, TESTING AND BLOCKERS
The rate of estrogen receptor (ER) and progesterone receptor (PgR) expression varies among uLMS tumors. However, it has been found to be present in 40%-80% of cases. The test to determine uLMS hormone receptor expression is simple and can be ordered by your doctor. The pathologist stains slides from your original tumor. They estimate what percentage of the tissue took up the stain indicating estrogen and progesterone receptors on the tumor tissue sample. uLMS is considered hormone-receptor positive if the tumor contains substantial amounts of estrogen and/or progesterone receptors. If a tumor is determined to be estrogen-receptor positive, it means that estrogen fuels the cancer cells growth within the tumor.
UTERINE LAPAROSCOPIC MORCELLATION
If your hysterectomy was performed using morcellation, your risk of recurrence is much higher. We advise you to seek legal council immediately. Please watch the LMS Boot Camp video #7 for details on why this is so important. Also, see Campaign Against Morcellation, a Facebook public page about advocacy against morcellation.
The above information is from: https://www.lmsdr.org/uterine-leiomyosarcoma-ulms-information