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Sarcoma Support Group

Sarcoma: What is it?

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.

What can I do?

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.

Who can I talk to?

You’re not alone!

At our Sarcoma Support Group you’ll find:

Help in forming a network

Face-to-face connections with others who know what you’re going through

Hope and encouragement for your emotional, mental and spiritual wellbeing while you fight for your physical wellness

What is the first thing I should 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.

According to the American Cancer Society, 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. Over 1.3 million people in the United States were diagnosed with cancer in the year 2003. Fewer than 1% of these people will have sarcoma. In other words, sarcoma is a very rare disease. About 11,000 people will be diagnosed with sarcoma this year, and approximately 50% will be men and 50% women. More than half of these people will be over the age of 60. Sarcomas are more common among childhood cancers, accounting for 15% of those diagnosed per year.

Links and Resources:

Office of Rare Diseases

Pub Med - Free Searches of U.S. National Library of Medicine

Medscape Oncology Home Page

AACR - American Association for Cancer Research

Quackwatch - Guide to Health Fraud

CancerProtocol.com

Nutritional Research

Developing Cancer Therapies



More information is available from

Sarcoma Alliance


For personal contact you can contact Beth Lagrange by email or by phone at 864-254-0333
.

 

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