Welcome to the Liddy Shriver Sarcoma Initiative
We work with individuals, families, communities and medical teams around the world to offer support, to provide expert information and to fund promising sarcoma research.
A Global Survey of Patients and Supporters
The Liddy Shriver Sarcoma Initiative is conducting a survey that asks sarcoma patients and their loved ones around the world about the role of the Internet in their sarcoma journey. Data from the survey will be used to publish the story of the sarcoma experience in the digital age. What should doctors knows about the power of the Internet for patients and families? What should new patients and caregivers know about using the Internet as a health resource? Your survey answers will determine the story we tell!
Calling All Volunteers!
April's issue of ESUN features a call for volunteers within the sarcoma community, the announcement of a new research grant, and a call for participation in osteosarcoma and leiomyosarcoma research projects.
A New Issue of No Borders
March's issue of No Borders features an update on the Faces of Sarcoma gallery, two new hopeful stories and a call for the participation of leiomyosarcoma patients and survivors.
New Leiomyosarcoma Research
The Initiative is funding new leiomyosarcoma research that aims to improve the diagnosis and care of LMS patients. The research will be conducted by investigators at Harvard Medical School.
The Mobile Sarcoma Community
The Liddy Shriver Sarcoma Initiative is creating an inspiring and informative mobile community that will reach its members with a couple of brief text messages each month.
Text LSSI to 50555 to join the Liddy Shriver Sarcoma Initiative’s Mobile Community! You will receive important updates about sarcoma advocacy action items, events, newly published articles, hopeful stories and research progress. SMS subscription service. Up to 4msg/mo. Msg & Data Rates May Apply. Text STOP to 50555 to STOP. Full terms: mGive.com/E Privacy Policy: mGive.org/P
Funding Immunotherapy Research
The Initiative funded a new study on the use of immunotherapy for rhabdomyosarcoma and osteosarcoma. The research will be conducted by three investigators at the National Cancer Institute.
Two Grants for Childhood Cancer Research
The Initiative announced the funding of two studies on pediatric sarcomas. First, a $250,000 international collaborative research study on bone sarcoma metastasis has been co-funded by the Initiative and the Reid R. Sacco Memorial Foundation. It is made possible by additional support from Arlo and Sue Ellison, the Jack Langseder ForeverSTRONG Foundation, Fishin’ For The Cure and Strike Out Sarcoma.
The second grant funds a promising study on osteosarcoma and malignant fibrous histiocytoma of the bone that could lead to new targeted treatment for people with these diseases. It is made possible by the generous support of Laura Somerville, Brandon's Defense Fund, Soccer 'Round the Clock, Sarah's Garden of Hope, and by donations made in memory of Jonah Chrisman and Sara Corbelli.
Inspiring Stories and Reflections
Courageous people around the world are living beyond their diagnosis and blazing a trail for the rest of us. Take a moment to read some of their inspiring thoughts and encouraging stories.
We look forward to hearing from more people who want to share the great hope of "life after sarcoma." Get started on your story today.
Two Studies Funded
The Initiative has announced the funding of a promising study on rhabdomyosarcoma. This grant was made possible by generous gifts from the Jordan Paganelli Sarcoma Foundation, and from the families and friends of Timothy "Tim" Yeates, Anna Rogotzke, Dillon Wolford, Ashley Miller, Harper Creek and Teri Marriage-Kuespert.
The Initiative has also announced the funding of a research study on angiosarcoma. The study was made possible, in part, by a generous donation from Laura Somerville and a supporting donation from the Center for Research and Analysis of Vascular Tumors (CRAVAT).
Students Join the Initiative to Fund Sarcoma Research
Recently we received two special letters from students who devoted their time and energy to the Initiative. We'd like to extend a warm thank-you and congratulations to Megan, Jessica and Danielle (pictured to the left) from Glenbard WestHigh School. Inspired by two sarcoma patients, they created the "Eat It to Beat It" fundraiser at their local yogurt shop and raised $1,000 for sarcoma research.
The second letter from fifth grader Clayton Sumner touched our hearts. Clayton organized "A Hike to Strike Out Sarcoma" and raised $1,254 for leiomyosarcoma research in honor of his father. Thank you, Clayton!
One Family, Three Cities, One Million Dollars
While dealing with liposarcoma, the Landes family rallied together to create a set of events to benefit liposarcoma research. In their first two years, the walk funded two international collaborative research studies on liposarcoma. This year, the Wendy Walk was bigger than ever, raising more than $500,000 for research.
Artem's Gift
We would like to express our gratitude to the friends and family of Artem Petrossian, who recently contributed over $10,000 to sarcoma research in Artem's memory. The money was raised by Artem's brother, Artin. On his weblog, Artin wrote:
"Photography was just one of the things that Artem continued to pursue in between surgeries and treatments, and he left his family with a wealth of photographs that will let us see the world through his eyes forever. I picked out a few of my favorite photos that he took over the past three years, and I hope these photos can help raise money to donate towards cancer research - or simply inspire someone to continue to pursue their passions no matter what obstacles they face."
What is Sarcoma?
A sarcoma is a cancer of the connective tissues, such as nerves, muscles, and bones. Sarcomas can arise anywhere in the body and are frequently hidden deep in the limbs. They are often misdiagnosed and assumed to be sports injuries or benign bumps. Sarcomas are rare tumors, comprising less than 1% of adults' cancers and nearly 21% of children's cancers.1 They are best diagnosed and treated by a team of doctors with experience in all aspects of sarcoma care. Though sarcomas can be aggressive and difficult to treat, many people survive sarcoma.
Types of Sarcoma
There are more than 50 subtypes of sarcoma, and there are two basic categories of sarcoma: soft tissue sarcoma and bone and joint sarcoma.
Soft tissue sarcomas make up less than 1% of all cancer cases. About 11,000 people are diagnosed with soft tissue sarcoma in the United States each year.
Primary bone sarcomas make up less than 0.2% of all cancer cases. About 2,900 people are diagnosed with bone and joint sarcomas in the United States each year, and almost half of them are under the age of 35.
Learn About
Sarcoma Subtypes
How are Sarcomas Diagnosed?
A patient may see several doctors and have a variety of medical tests before sarcoma is suspected. The diagnosis of sarcoma is usually made with a biopsy, when a doctor removes a small part of the tumor for examination. The decisions involved in the biopsy approach can be complex and are best made by a sarcoma specialist.
After the biopsy, a pathologist looks at the tumor tissue under a microscope to make a diagnosis and to determine the tumor's grade (which indicates how aggressive the tumor is). The determination of which sarcoma a patient is diagnosed with should be done by a skilled pathologist with extensive background in sarcoma pathology. Results of the biopsy and other tests are typically used to provide a disease stage (which indicates how advanced the disease is in the body). Learn more about sarcoma diagnosis.
How are Sarcomas Treated?
Starting the Journey
Dr. Meyers provides a brief and hopeful introduction to the journey with sarcoma.
Sarcoma treatments vary by tumor type, grade and stage, but nearly all sarcomas are treated with surgery when it is possible. The goal of surgery is to remove all disease from the affected area(s). Some low-grade tumors only require surgery, but many sarcomas are treated with chemotherapy and/or radiation therapy in order to prevent or get rid of disease that spreads throughout the body. These treatments may be necessary before or after surgery.
The duration and intensity of sarcoma therapy can be surprising and disheartening to patients and their families, and coping with the side effects of treatments can be a challenge. Many patients and their families choose to join support groups, which can be a great source of information and strength. Families can also seek counseling and support services at cancer centers and local charitable organizations. Learn more about sarcoma treatment.
Are Sarcomas Curable?
Cures are treatments that eradicate an illness permanently. Many sarcomas are curable, particularly (a) low grade malignancies which only require surgery and (b) the pediatric sarcomas. Still, many physicians don't use the term "cure" when talking about sarcoma. Dr. Buecker explains:
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
Because sarcomas can return long after an initial diagnosis, survivors have regular check-ups for many years after treatment ends. Some of those survivors choose to share their stories to encourage others.
1. Burningham, Hashibe, Spector and Schiffman. The epidemiology of sarcoma. Clinical Sarcoma Research. 2012 Oct; 2(14).
We are Here to Help.
The Liddy Shriver Sarcoma Initiative provides educational resources and personal support for everyone dealing with sarcoma. Because we've been publishing articles written by sarcoma specialists and advocates for nearly 10 years, there is much information to be found at SarcomaHelp.org. We have done our best to present the information in ways that make it easy for our visitors to read and understand. Ultimately, we hope that this website will empower you. The knowledge gained here can help you and your loved-ones to communicate well with each other and with the doctors and nurses who deal with sarcomas.
Where to Begin?
If you are searching for information that will strengthen you to deal well with sarcoma, either for yourself or for someone you love, the following articles are a great place to start:
- Encouraging Sarcoma Guidelines
- The Sarcoma Universe: A Guide for the Newly Diagnosed
- Sarcoma Centers
- Sarcoma Diagnosis & Sarcoma Treatment
- Clinical Trials for Sarcoma
We consider the pages listed above to be essential reading for everyone dealing with sarcoma. If you find yourself overwhelmed by the amount of information in these articles, please bookmark this site and return when you are ready to learn more.
More Specific Information
Sarcomas are a group of rare diseases, and different sarcoma subtypes behave in different ways. We encourage you to learn about the specific subtype of sarcoma that is affecting you or your loved-one.
Sarcoma Subtypes
Hope, Inspiration and Action
The rest of the material at SarcomaHelp.org is devoted to:
- publishing creative writing and stories
- covering news, articles and events that interest the sarcoma community in ESUN
- working together with patients, families, organizations and medical teams to fund sarcoma research
Reach Out
There are many ways to reach out and come together with people around the world in the Initiative. We hope that you will join us and benefit from the shared experiences, wisdom and positive action that have changed countless lives for the better. Please consider how you can get involved and make a difference.