Sarcomas are cancers of the connective tissues, such as nerves, muscles, and bones. There are more than 50 subtypes of sarcoma, and there are two basic categories of sarcoma: soft tissue sarcoma and bone and joint sarcoma. Some sarcomas, such as Ewing's sarcoma, have both a soft tissue and a bone and joint form.

• In the United States alone, 12,770 people were expected to be diagnosed with sarcoma in 2008. Sarcomas make up about 1% of total cancer diagnoses in the United States.
• One in approximately every 350 people in the U.S. will be diagnosed with a sarcoma at some time during their lifetime (ESUN).
• Almost one-half of bone sarcomas and about one-fifth of soft tissue sarcomas are diagnosed in people under the age of 35 (ESUN).

Because so few people are aware of sarcoma, many of them will ask, "What is sarcoma?" We have translated some simple Sarcoma Facts into 23 languages that are useful in conversation and in print.

Soft Tissue Sarcomas

Dr. Murray Brennan of Memorial Sloan-Kettering Cancer Center writes: "The majority of patients who present with a soft tissue sarcoma are cured, and the majority of those are cured by their initial operation." Dr. Brennan provides advice and hope for soft tissue sarcoma patients here.

About 10,390 people are diagnosed with soft tissue sarcoma in the United States each year. About 55% of those will be male, and 45% will be female (ACS). Soft tissue sarcomas make up less than 1% of all cancer cases.

The most common types of soft tissue sarcoma are:

• MFH or Malignant Fibrous Histiocytoma (28%)
• Liposarcoma (15%)
• Leiomyosarcoma (12%)
• Synovial sarcoma (10%)
• Malignant Peripheral Nerve Sheath Tumors (6%)
• Rhabdomyosarcoma (5%)

The following internet resources provide detailed and reliable information about soft tissue sarcomas:

• "Questions and Answers" from the National Cancer Institute
• "Treatment Guidelines" from the National Comprehensive Cancer Network
• "Soft Tissue Sarcoma Subtypes" from the Sarcoma Alliance for Research through Collaboration
• "Detailed Guide" from the American Cancer Society

Bone Sarcomas

About 2,650 people will be diagnosed with bone and joint sarcomas in the United States each year (ACS). About 53% of those diagnosed will be male, and 47% will be female. Primary bone sarcomas make up less than 0.2% of all cancer cases.

The most common types of bone cancer are:

• Osteosarcoma (35%)
• Chondrosarcoma (35%)
• Ewing's Sarcoma of the bone (10%)
• Chordoma (5%)
• Malignant Fibrous Histiocytoma / Fibrosarcoma (2%)

The following internet resources provide detailed and reliable information about bone sarcomas:

• "Questions and Answers" from the National Cancer Institute
• "Treatment Guidelines" from the National Comprehensive Cancer Network
• "Bone Sarcoma Subtypes" from the Sarcoma Alliance for Research through Collaboration
• "Detailed Guide" from the American Cancer Society
• "Glossary of Orthopaedic Diagnostic Tests" from the American Academy of Orthopaedic Surgeons

The Sarcoma Learning Center has been created to help you deal with sarcoma, and to help you understand and discuss your disease and potential treatment options with your medical team. Many of the articles here has been written by physicians and nurses for our bi-monthly publication, the Electronic Sarcoma Update Newsletter, or ESUN.

 

In the menu on the right, there are links to detailed articles about a wide variety of sarcomas. In addition, there are also articles about important topics like:

• Biopsy and Pathology
• Staging
• Sarcoma Centers
• Adolescents and Young Adults
• Fertility
• ...and more

Patients and their caregivers often feel more comfortable dealing with doctors and treatment when they develop a working knowledge of these topics.

The Essentials for Patients and Survivors

The following articles have been read and shared by patients and survivors around the world. They are a great place to start.

Guidelines for Patients

Dr. Murray Brennan provides some guidelines to help you and your loved ones cope with sarcoma.

A Guide to the Sarcoma Universe

This article is designed to help you and those around you navigate the sarcoma universe. It provides important facts about sarcoma and its treatment, and it is meant to be a useful guide for sarcoma patients and those who advocate for them, including their parents, family and friends. 

Helping a Friend Deal with Sarcoma

If you keep hearing the questions, "What can I do?" or "How can I Help?", we hope that this information will help your friends and family help you!

Essentials for Parents of Patients

Guidelines for Parents

Dr. Paul Meyers offers guidelines to help deal with the fear and challenges of having a child diagnosed with sarcoma.

Journeys

Read the journeys and advice of other parents of children diagnosed with sarcoma.

Essentials for Partners and Caregivers

The following articles have been read and shared by caregivers around the world. They are a great place to start.

Guidelines for Caregivers

In this article, Dr. Murray Brennan writes, "Being a caregiver for a patient with cancer, whether family or friend, is a challenging and sometimes daunting task, but there are ways in which you can help."

The Caregiver's Paradox

Hana Pester discusses the paradox of trying to be both a partner and a caregiver to a sarcoma patient.

The Caregiver’s Role in the Diagnostic Process

How to help during the diagnosis process: dealing with pain, uncertainty, tests, medical professionals, and more.

The Caregiver’s Guide to Beginning Treatment

Tangible ways to help your loved one through sarcoma treatment.

Further Exploration

At some point along the way, many sarcoma patients consider clinical trials as a part of treatment. In The Clinical Trials Learning Center, we provide an introduction to clinical trials, as well as a searchable database of clinical trials that are available to sarcoma patients.

To learn about today's cutting-edge sarcoma research, make sure to visit The Research Center. In addition to research news, you'll find information about our research grants program. We have raised more than one million dollars for promising sarcoma research grants.

We invite you to view the Faces of Sarcoma, and submit your own photograph. Read the Journeys of patients, caregivers and friends, and submit your own journey. Meet others who have been affected by sarcoma and find assistance in Support Groups and Organizations. And attend local events to learn, share, and increase sarcoma awareness.

Welcome, Friends!

One of our goals is to increase awareness of sarcoma, a rare and dangerous cancer. By visiting our site, you're helping us to reach this goal.

Learn About Sarcoma

Here are a few simple ways to learn about sarcoma. Just watch the video, and share it with friends on YouTube and Facebook. Get the Sarcoma Facts. Or explore the Sarcoma Learning Center by using the menu on the right.

Join the Movement

Each July, events are held around the world during International Sarcoma Awareness Week. We encourage you to check and see if there will be a 2009 Team Sarcoma Initiative event near you. By attending, you will support everyone in your area who is dealing with sarcoma. And if there isn't an event in your area, you can plan your own Team Sarcoma event to honor a friend and support a sarcoma charity or a sarcoma foundation.

Helping a Friend Deal with Sarcoma

Know someone who has sarcoma? This article presents things that you can do to help.

Information for the Medical Team

The peer-reviewed articles throughout this website were written by physicians, researchers, and nurses who work with sarcoma patients. These articles often contain case studies, research results and references that will be helpful to members of your medical team.

In the menu on the right, there are links to detailed articles about a wide variety of sarcomas. Much of this information has been written for our bi-monthly publication, the Electronic Sarcoma Update Newsletter, or ESUN. In addition to articles about specific sarcomas, there are also articles about important topics like biopsy and pathology, staging, sarcoma centers, and more.

The Clinical Trials Learning Center contains a one-of-a-kind searchable database of clinical trials that are available specifically to sarcoma patients. If you notice that a trial is missing, please let us know.

In The Research Center, we publish scientific news and information about today's cutting-edge sarcoma research. We also describe our research grants program and the sarcoma grants we have funded to date.

How to Get Involved

Share this Information with your Patients

Encourage your patients and their caregivers to visit our Learning Centers. Some doctors and nurses choose to print out copies of relevant articles to give to their patients.

Submit an Article

We welcome contributions of essays and articles that are relevant to ESUN and its intended audience. If you would like to write an article for ESUN, please review ESUN's Submission Guidelines.

Review Articles

We welcome new reviewers for articles that have been submitted for our consideration.

Apply for a Research Grant

The Liddy Shriver Sarcoma Initiative funds basic research seed grants in sarcoma. We anticipate that results from these demonstration or starter grants will provide results that will allow the researcher to apply for funding for a larger study. We believe that work needs to proceed on many of the subtypes of sarcoma and have supported work in a wide range of sarcomas. Learn more about applying for a sarcoma research grant.

Participate in International Sarcoma Awareness Week

More than 25 medical centers around the world will host events as a part of International Sarcoma Awareness Week this July. These events raise awareness of sarcoma, support sarcoma patients, and often raise money for sarcoma research. Please consider becoming involved; plan a Team Sarcoma event at your institution.