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5 Resources for Patients With Soft Tissue Sarcoma

5 Resources for Patients With Soft Tissue Sarcoma

Follow these links to find patient support and information about soft tissue sarcoma.

For patients diagnosed with prevalent cancers, such as breast or prostate cancer, finding information and resources about the disease and to receive care from experienced medical professionals. However, for people with less common forms of cancer, such as soft tissue sarcoma (STS), finding information can take a bit more work.

Soft tissue sarcoma is cancer that begins in the soft tissues of the body, such as fat tissue, muscle, tissues of the gastrointestinal tract, connective tissue, nerves and others. There are more than 50 different subtypes of soft tissue sarcoma, and nearly any soft tissue in the body can be affected. Some subtypes are much more rare than others.

Though soft tissue sarcoma is not as prevalent as other forms of cancer, there are many sources of information available online, if you know where to look.

Sarcoma Foundation of America (SFA)
The SFA is a non-profit organization dedicated to advocating for sarcoma patients, increasing awareness about the disease and funding research about soft tissue sarcoma. Their website has a ton of useful information for patients and families living with soft tissue sarcoma, including educational materials about the disease, a database of hospitals and medical centers that specialize in treating STS, a page on clinical trials that are currently seeking participants, and a page with financial assistance resources for patients.

Sarcoma Alliance
This non-profit organization was founded by sarcoma patients who wanted to build a community for people who were diagnosed with this type of cancer. The website offers a great starting point for learning about what sarcoma is, the various subtypes of sarcoma and treatment guidelines. Keeping true to its founders’ goal of creating a community, it has a list of support groups for people living with sarcoma, many of which meet online and are accessible from anywhere. The site also has information of clinical trials and sarcoma treatment centers.

Liddy Shriver Sarcoma Initiative
A great starting point for new patients and family members of new patients, this non-profit organization offers information on many subtypes of sarcoma, inspirational stories from sarcoma patients and updates on the latest medical research about sarcoma. Their “Guide to the Sarcoma Universe” covers a wide range of topics, everything from communicating with friends and family about a diagnosis, to organizing medical records, managing emotions and navigating financial issues.

Smart Patients Sarcoma Support Group
This online support group and forum offers an opportunity for sarcoma patients and caregivers to connect. It is a place to find support, share stories, ask questions and learn from others’ experience with treatment, diagnosis, symptoms and the many challenges of living with sarcoma.

National Cancer Institute (NIH)
If you’re looking for information about a specific type of sarcoma or want to further your reading on the topic of soft tissue sarcomas, the National Cancer Institute has pages covering many topics, including diagnostic tests, staging and a breakdown of the different treatment options.

Medically reviewed in March 2020.

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