July is SARCOMA Awareness Month, so I thought I’d share some SARCOMA facts and info.
Sarcoma is a cancer of the connective tissues, such as nerves, muscles, cartilage, joints, bone, soft tissue or blood vessels.
DSRCT is a “Soft Tissue” sarcoma.
Its predicted about 11,410 people will be diagnosed with a soft tissue sarcoma in the US this year. There’s predicted to be a total of about 14,000 total sarcoma cases (compare that to 234,580 cases of breast cancer, 48,610 cases of leukemia, and 228,190 cases of lung cancer predicted in the United States for 2013).
Sarcomas account for only 1% of all cancer diagnoses (though 15% of cancer diagnoses in patients under 20 are sarcoma).
There are as many as 30 different subtypes of SARCOMA!
These statistics highlight the importance of being treated by a oncologist that specializes in sarcoma, and ALSO has experience treating DSRCT, which some sarcoma specialists may have never seen!
Many experienced hospitals and oncologists have never even heard of DSRCT. Many patients are misdiagnosed and misinformed. DSRCT treatment responses vary greatly from patient to patient and there is NO proven effective treatment. Which is why its so crucial to see a doctor who is experienced and has access to the latest information. Its also crucial to seek out a SURGEON with DSRCT experience. Most patients are considered inoperable by general surgeons, even by experienced cancer surgeons. The delicate and lengthy surgeries required for DSRCT resection are difficult and most surgeons cannot do them. But they aren’t always IMPOSSIBLE. Inoperable means the surgeon and facility you have consulted cannot do it. It doesn’t always mean it cannot be done.
(My son was considered inoperable by local surgeons at St. Louis Children’s Hospital and by St. Jude in 2007, and LaQuaglia removed all visibile disease in a less than 4 hour surgery with no complications that same year!!!)
KNOWLEDGE IS POWER.