Leiomyosarcoma (LMS) is a type of rare cancer called sarcoma. Sarcoma accounts for only 1 percent of all cancer in adults. Sarcoma occurs in the connective tissues, such as muscles, bones and nerves.
Sarcoma is subdivided into different kinds, based on where the cancer occurs. Leiomyosarcoma arises in smooth muscle tissue. Smooth (or involuntary) muscles can be found all over the body, including the walls of blood vessels. LMS is most common in the pelvic and abdominal areas, followed by the arms and legs.
What works for one kind of cancer may not work for another. For example, the best treatment for another kind of uterine cancer may not work well for uterine LMS. There are different kinds of uterine sarcoma. Not all are leiomyosarcoma.
Because of its rarity, many cancer doctors – even gynecological oncologists – see few cases of LMS. They may not know the best current treatments. Many patients seek treatment, or at least a second opinion, from a sarcoma specialist. Major sarcoma centers include: M.D. Anderson Cancer Center in Houston, Memorial Sloan-Kettering Cancer Center in New York City, and Dana-Farber Cancer Institute in Boston.
When possible, surgery is often recommended for LMS. Doctors also use chemotherapy and radiation, but those treatments are less effective against LMS than they are against many cancers.
In the uterus, LMS tumors may be mistaken for benign fibroids. Even when the cancer appears to be contained within a tumor, LMS can send out microscopic tendrils. That’s why surgeons often remove tissue that appears healthy around the tumor, just to be safe. Surgeons generally will remove the uterus and ovaries if LMS is found there or nearby.
LMS usually spreads through the bloodstream, not the lymph nodes. Even if surgeons get all of the tumor, they may miss microscopic cancer cells, or cancer cells already may have escaped into the bloodstream. Thus, surgery is no guarantee that the cancer won’t return.
LMS can return to the pelvic area even if a woman has had a hysterectomy. When it spreads (or “metastasizes”) out of the area, it often turns up in the lungs or liver.
Sarcoma specialists recommend follow-up exams for all LMS patients. They often suggest CT scans of the chest, abdomen and pelvis every three to six months for the first two years, with less frequency after that. X-rays and ultrasounds also may be used.
These imaging techniques are important because LMS tumors can grow large before patients have any symptoms. Pap smears are unlikely to reveal LMS, and blood tests don’t detect LMS.
This content was written by staff of HysterSisters.com by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.
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