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There are many ways you can help children and their families get the care they need.
Here at Children’s Hospital Boston, we specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs. We understand that you probably want to learn all you can about your child’s leiomyosarcoma to determine your next steps.
What is leiomyosarcoma?
Leiomyosarcoma is a cancer of the muscle, particularly of soft tissue. It is a type of soft tissue sarcoma, and can appear in many places in the body, but in children it usually occurs in the gastrointestinal tract, which includes the stomach, small intestines, colon, appendix, rectum and anus. It can spread (metasize) to other areas of the body if it’s not removed, but if it is completely removed, it almost never reappear in other parts of the body. Overall, it is not a highly aggressive form of cancer and usually is not considered life threatening if it is treated early.
What are the different kinds of leiomyosarcoma?
Is leiomyosarcoma common?
No, they are rare. As a group, soft tissue sarcomas (other than rhabdomysarcoma, which is slightly more common) account for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors. More specifically:
Will my child be OK?
Leiomyosarcoma is extremely rare, and there are no official numbers on how well children manage the disease in the long term. However, doctors have studied soft tissue sarcomas (which is the category of cancer that and find that leiomyosarcoma falls under) and find that if a soft tissue sarcoma is completely resected, or removed, the survival rate is 80 percent or greater.
Is it curable?
Yes. If the tumor is recognized and removed early enough before it grows too large, it can be resected and removed before it metastasizes, or moves to other regions of the body.
What are the symptoms of leiomyosarcoma?
Because soft tissue sarcomas affect tissue that is elastic and easily moved, a tumor may exist for a long time before being discovered, growing large and pushing aside surrounding tissue. Symptoms vary greatly with the size, location and spread of the tumor, but may include:
When are symptoms noticed?
If a child has leiomyosarcoma, usually the symptoms do not appear until adolescence, since it usually occurs in adults.
What causes leiomyosarcoma?
The exact cause of leiomyosarcoma is not entirely understood. However, studies have indicated that genetics may play a role in the formation of all soft tissue sarcomas. In addition:
After your child is diagnosed with leiomyosarcoma, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise- that way, when you talk to your child’s doctors you can be sure that all of your questions are concerned. If your child is old enough, you may want to suggest that he writes down what he wants to ask her health care provider too.
Here are some questions to get you started:
Have questions about some of the terms mentioned on the page? Visit our Cancer Care Glossary for more information.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”