| General | 
It's estimated that over 7,900 people in the state of Maine were diagnosed with Cancer in 2006 and that almost 1.4 MILLION new cases were discovered across the US! That is in just ONE year and just in OUR country!
What the hell is a sarcoma?
Sarcoma is a rare and deadly form of cancer that strikes 10,000 people a year, and the kind of thing that could only have come from a place like hell. The key to eventually banishing it there forever is your awareness. The more people know about it, the more people will know that early detection, proper diagnoses, and proper treatment with a sarcoma specialist are the number one weapons we have to beat it.
The Sarcoma Alliance is at the frontline on getting this message out, and providing sarcoma patients and their families with the guidance, education, and support they desperately need.
To commemorate Sarcoma Awareness Week 2003 (June 9-16), the Sarcoma Alliance has created the above T-shirt. If when you wear it, someone asks you, "Well, what the hell is sarcoma?", you can either tell them, or direct them to the answer on your back, and know that you did your part in spreading the word and stopping this horrible disease.
The First Thing You 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.
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 1.3 million people in the United States will be 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.
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.
Want some more information?
Go to http://www.sarcomaalliance.com/
|
.."
