What You Need To Know

The first thing you should know is that you are not alone. There are many people fighting and surviving sarcoma in the world today. At any one time there are approximately 50,000 people struggling with the disease. The mission of the Sarcoma Alliance – founded and managed by people with sarcoma and their caregivers – is to help people like you survive and live with this disease. You are not alone.

To put your diagnosis in context, you should know a little about sarcoma and its place within the entire range of cancers. According to the American Cancer Society, 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. Over 1.5 million people in the United States will be diagnosed with cancer in the year 2010. About 1% of these people will have sarcoma. In other words, sarcoma is a very rare disease. About 13,000 people will be diagnosed with sarcoma this year and approximately 50% will be men and 50% women.

Sarcomas are cancers that are much more likely to affect children and young adults than many other more common cancers. More than half of the people diagnosed with sarcoma will be under the age of 60. The median age of diagnosis of bone sarcomas is 41, with more than 40 percent of people diagnosed under age 35.  The median age of diagnosis for soft tissue sarcomas is 58, with about 20 percent under age 35. In comparison, only about 2 percent of breast cancers and 1 percent of colon cancers are diagnosed in people under 35. . Furthermore, about 15% of childhood cancers are sarcomas, and about 15% of the people diagnosed with sarcomas are children.

Now, a little information about sarcoma specifically. Sarcoma is a cancer of the connective tissue. The connective tissue includes muscle, bone, fat, nerve, cartilage, blood vessel, and deep skin tissue. Connective tissue is present throughout the body, so sarcoma can occur in any location. Two thirds of sarcomas are located in the extremities (arms or legs). Because it is so rare and it takes multiple forms in multiple locations, sarcoma is difficult to detect, often misdiagnosed and complex to treat.

With a rare and complex disease such as sarcoma, it is important to seek the best possible care to improve your chance of survival. Many doctors have never seen or treated a patient with sarcoma. With a diagnosis of sarcoma, it is appropriate to obtain a second opinion about the initial diagnosis and the treatment plan. You may choose to obtain a second opinion even if you are being treated at a major cancer center. Your doctor will not be offended if you seek a second opinion. It is standard procedure. You should seek out experts who are familiar with the complex nature of sarcomas. These include: the pathologist who will examine cells from your “biopsy” or tissue sample under a microscope; the oncologist who will prescribe and monitor chemotherapy if you need it; the surgeon who will remove the tumor; and the radiologist who will oversee radiation treatments if you require them. The optimal setting for treatment is a sarcoma center that has a multidisciplinary team of all of these specialists working together.

As with any illness, a sarcoma patient must learn to be his or her own advocate and work together with the healthcare team to make informed decisions. This is especially true with a rare disease such as sarcoma. Even the experts may disagree with each other as to what the best options are for your care. They make the best recommendation they can based on their knowledge and experience, but it is ultimately up to you, the patient, to decide what’s best for you. You make the key decisions about your care. We encourage you to learn more about your sarcoma and your treatment options so that you can participate fully in your care. Seeking out information and support are the first steps in this process. We hope that the Sarcoma Alliance can be there to help you along the way.