Are there genetic tests available to assess a persons risk for leiomyosarcoma?

No. We are unaware of genetic tests to help inform family members about leiomyosarcoma risks. While leiomyosarcomas are due to genetic changes in the tumor cells, these genetic changes are not inherited. They occur only in the cancer tissue. It is very rare for leiomyosarcoma to occur in multiple members of the same family.

That being said, there are a few genetic syndromes that can run in families, where leiomyosarcoma may occur as part of the syndrome. Having a single relative with a leiomyosarcoma alone does not typically raise suspicion for these syndromes, however a doctor may suspect these syndromes in families with a certain combination of cancers and other symptoms. These syndromes include, hereditary retinoblastoma, Li-Fraumeni syndrome, Neurofibromatosis type 1, tuberous sclerosis, nevoid basal cell carcinoma syndrome, Gardner syndrome, and Werner syndrome. ****

Last updated on 05-01-20

Who should I speak to if I think a hereditary cancer syndrome is running in my family?

We suggest you begin by speaking with your primary healthcare provider. Talk to him/her about your concerns regarding your family health history and discuss a referral to genetic professional. Genetic professionals are a source of information for individuals and families regarding genetic cancer syndromes, testing, and cancer prevention. More information about finding and visiting a genetics professional is available from the Genetic Consultation Handbook developed by Genetics Home Reference. The following online resources can help you find a genetics professional in your community:

Last updated on 05-01-20

What are other risk factors for leiomyosarcomas?

Additional risk factors for sarcomas in general, include exposure to radiation and certain chemicals (such as herbicides, arsenic, vinyl chloride, and dioxin). Damage or removal of lymph nodes during a previous cancer treatment is also a risk factor.

Last updated on 05-01-20

Are there other screening tests that can be done for leiomyosarcoma?

We are not aware of any targeted screening tests for leiomyosarcoma. However you can find tips for cancer prevention on the National Cancer Institute's Web site:
http://www.cancer.gov/about-cancer/causes-prevention/patient-prevention- overview-pdq

Last updated on 05-01-20

What is the long-term outlook for leiomyosarcoma?

The outlook for people with leiomyosarcoma depends on various factors, including tumor location, size, and type, as well as the extent of spread. Some patients with low grade tumors or with tumors that have not spread beyond Stage I have had excellent prognoses. There are numerous long term survivors from this group. In general, high-grade tumors that have spread widely throughout the body have less favorable survival rates.

Last updated on 05-01-20

How might leiomyosarcoma be treated?

Treatment of leiomyosarcoma varies depending on the location and stage of the cancer. Surgery is typically the first choice for treatment, however, chemotherapy, targeted drugs, radiation therapy, and hormonal therapy may also be used to treat leiomyosarcoma.

Additional information on the treatment of intestinal leiomyosarcoma is available from Medscape Reference. You may need to register to view this online medical resource, but registration is free

Last updated on 05-01-20

Selected Full-Text Journal Articles

Free-full text articles for leiomyosarcoma

Garau R. The medical experience of a patient with a rare disease and her family. Orphanet Journal of Rare Diseases. 2016;11:19.

Last updated on 04-27-20

Name: National LeioMyoSarcoma Foundation Annie Achee, NLMSF President 2843 E. Grand River #230
East Lansing, MI, 48823, United States
Phone: +1-303-783-0924; +1-303-808-3437 Email: annieachee@aol.com Url: http://www.nlmsf.org
Name: LMSarcoma Direct Research Foundation Post Office Box 52697
Tulsa, OK, 74152 , United States
Toll Free: +1-866-912-2730 Fax : +1-413-502-2241 Email: Contact@LMSdr.org Url: http://www.lmsdr.org
Name: The Liddy Shriver Sarcoma Initiative 17 Bethea Drive
Ossining, NY, 10562-1620 , United States
Phone: 914-762-3251 Url: http://sarcomahelp.org/

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