FAQs

 

Is LMSarcoma Direct Research Foundation (LMSdr) a charitable 501(c)(3) nonprofit? Is my donation tax-deductible?
Yes, since 2006.

What is leiomyosarcoma?
LMS is a cancer which starts in the smooth involuntary muscles, like blood vessels, uterine or retroperitoneal muscles. These are connective tissues so they are grouped as a sarcoma – of which LMS is one of the most common of the 60 sarcoma subtypes. All sarcomas are genetically unique and respond to treatments differently.

How do you pronounce leiomyosarcoma?

 

What are the most important things to do when first diagnosed?
*  Consult a sarcoma specialist before deciding on a treatment
*  Make notebook – keep copies of all reports: pathology, radiology, surgical, lab tests and doctor’s notes. Keep    phone numbers and appointment notes organized.
*  IF you had uterine LMS, ask your oncologist to order estrogen and progesterone testing on your tumor. If positive   you could be a candidate for aromatase inhibitors (estrogen blockers post menopause.)
*  Get follow-up scans every 3 months for the first 2 years.
*  Join our Face Book group for information and support.
*  Research! Know you options and make informed decisions.

Is leiomyosarcoma caused by the environment or genetics?
LMS is caused by gene mutations in the DNA of a single smooth muscle cell that has multiplied itself. What caused this mutation is unknown. A small percentage of people get it from prior radiation sites. More research is needed.

Is leiomyosarcoma inherited from family members?
LMSdr has documented cases of about 10 families where both sisters or mother/daughters have ULMS. However, with the majority of patients, there are no other known family members with LMS. In the above cases, it is not known if there was a genetic link or environmental one.

What does grade mean?
Grading refers to the appearance of cancer cells under a microscope. The more abnormal the higher the grade and faster growth. Most LMS is high grade.

What does stage mean? 
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. There are two different staging systems for LMS and gynaecological  or uterine LMS.  Generally speaking, stage 1 means it has not spread from the original site.  Stage 4 means it has spread to a different part of the body (metastasis.) There are no known cures for stage 4 LMS yet, but there are long term survivors who treat stage 4 as a chronic life-long illness.

What is the most effective treatment for leiomyosarcoma?
Surgery with wide margins is the gold standard treatment for LMS.

What is the proper follow-up surveillance for leiomyosarcoma?  
Sarcoma specialist recommend CT or MRI scans of the chest, pelvis and abdomen:
* every 90 days until one is NED (no evidence of disease) for 2 years.
* every 6 months after you have been NED for 2-3 years
* once a year after you have been NED for 5 years and more
If you get a new tumor then you go back to every 90 days.

How rare is leiomyosarcoma?
It is estimated to occur in 4-6 people in 1 million. To give perspective, sarcomas represent only 1% of all cancers, and LMS is one of 60 subtypes of sarcoma. Because of this rarity, you must get 2nd opinions from a sarcoma specialist who has treated hundreds of patients and stayed current on the research. LMSdr funds only LMS specific research.

Should I get my tumor tested for hormone receptors? 
If your tumor started in tissue that is estrogen sensitive (female reproductive organs and breasts) your tumor may be estrogen sensitive.  Ask your doctor to order the pathology tests for estrogen and progesterone receptors.  If positive, you might be a candidate to take estrogen blockers for post-menopausal women.

How can I get involved and help?
LMSdr uses all volunteers and no paid staff. We need volunteers to help with our Word Press website, write, edit, moderate our Face Book Group and most important, fundraise. Please also see the menu tab GET INVOLVED on our site.