Resources for Patients
We are often told that knowledge is power, and nowhere does this seem more accurate than with the issue of Leiomyosarcoma. Knowing as much as you can about the condition and its treatment options is going to enable you to play a strong role in your fight against this rare form of cancer.
While the statistics for some can be a bit discouraging, the simple fact of the matter is that we don’t yet know enough about the many ways that LMS manifests, and that means that it is up to patients to play a very active role in their treatment.
The best way to do that is to use every available resource to find out all about your particular type of LMS, what the latest research indicates, and how to use it to overcome and fight the spread of it.
This page is going to give you the most comprehensive list of resources, hospitals, and organizations dedicated to the fight of this rare, difficult, but ultimately treatable condition. The sooner you are diagnosed and your cancer is staged, the better your prognosis. So, let’s be sure you have access to all of the information you need to choose the best treatment plan and enjoy the best outcome.
Resources for Leiomyosarcoma Patients
Association of Cancer Online Resources
Genetic and Rare Disease Information Center
Leiomyosarcoma Direct Research Foundation
LMSlifeline.com (An information portal for LMS patients)
National Cancer Institute (NCI)
National Coalition for Cancer Survivorship
National Comprehensive Cancer Network (NCCN)
National Institutes of Health (NIH)
OncoLink: The University of Pennsylvania Cancer Center Resource
Many experts in the treatment of LMS emphasize that you will receive the best prognosis and outcome when you work directly with a specialist center or hospital. Not all hospitals are equipped with the all that is necessary to combat LMS. Taking the time to identify the cancer treatment specialists, centers, and hospitals best suited to helping you overcome your type of LMS is certainly a very well informed method.
Do note that many people find themselves temporarily relocating or moving in order to get treatment. This is a difficulty, to be sure, but it is certainly one sure-fire approach to getting optimal care.
Cedars Sinai Sarcoma Program – Los Angeles, CA
Columbia Presbyterian Sarcoma Program – New York, New York
Dana Farber Cancer Institute DFCI – Boston, Massachusetts
Emory Winship Cancer Institute – Sarcoma and Musculoskeletal Program – Atlanta, Georgia
Fox Chase Cancer Center – Philadelphia, Pennsylvania
- Lee Moffitt Cancer Center and Research Institute at the University of South Florida – Tampa, Florida
Joan Karnell Cancer Center at Pennsylvania Hospital – Philadelphia, Pennsylvania
M.D. Anderson Cancer Center MDACC – Houston, Texas
Massachusetts General Hospital MGH – Boston,
Mayo Clinic – Florida
Memorial Sloan-Kettering Cancer Center MSKCC – New York, New York
Menorah Medical Center’s Sarcoma Institute – Overland Park, Kansas
Roswell Park Cancer Institute– Buffalo, New York
Sarcoma Oncology Center – Santa Monica, CA
Seattle Cancer Care Alliance – Seattle, Washington
The Cleveland Clinic Taussig Cancer Center – Cleveland, Ohio
The Washington Musculoskeletal Tumor Center – Washington Cancer Institute, Georgetown University, Washington DC
University of California Los Angeles Sarcoma Program – Los Angeles, CA
University of Miami Sarcoma Group – Miami, Florida
University of Michigan Comprehensive Cancer Center – Ann Arbor, Michigan
University of Minnesota Cancer Center – Minneapolis, MN
University of Utah Huntsman Cancer Institute Sarcoma Service – Salt Lake City, UT
While your LMS condition is a rare disease that can be difficult to treat, you now have the names and contact information for some of the best resource to use to combat your condition.
Source
LMSDR.org. Patient Resources. 2015. http://www.lmsdr.org/index.php
National Leiomyosarcoma Foundation. Resources and Links. 2015. http://www.nlmsf.org/what-is-lms/resources-links/