Sarcoma – Full texts of all articles from the journal devoted to sarcoma are available at: http://www.hindawi.com/journals/srcm/contents.html
Patient Registry Program
The Sarcoma Foundation of America (SFA) is managing a Sarcoma Patient Registry Program. The Registry records the significant events of the history and treatment of patients diagnosed with Sarcoma. The Registry is a data collection and reporting system hosted by Registry Partners and managed by SFA.
The Registry’s endeavor is to collect, store, analyze and interpret data on persons with sarcoma. SFA invites you to participate in its efforts to make the Sarcoma Patient Registry information as accurate and comprehensive as possible. By contributing, your data will be a valuable resource for oncologist and researchers conducting clinical trials and medical studies. Most of all, you will be helping to improve the care of current and future sarcoma patients.
You are eligible to join the Registry if you have been diagnosed with ANY sarcoma subtype.
If you have any questions or would like to join the Sarcoma Patient Registry, please send an email to [email protected] with your contact information and the most convenient time and method to contact you, or you can call toll free at (866) 501-6780
American Cancer Society
ASCO – Sarcoma specific information:
People Living With Cancer – A patient website from the Amercian Society of Clinical Oncology (ASCO)
The Brain Tumor Society
Cancer Information Network
CancerNet: PDQ – NCI’s Comprehensive Cancer Database
The Doctors Doctor – Interpret Pathology Reports (for a fee)
Steve Dunn’s Cancer Guide – Patient Perspective
Healthline – Cancer Channel
InteliHealth – Comprehensive Health Information
National Comprehensive Cancer Network – Website specifically for patients
Nature Reviews Websites
Oncolink – Cancer Information for Professionals and Lay Persons
Patient Power – Web based radio shows with discussion about various aspects of sarcoma care and diagnosis
The Center for Orthopedic Oncology and Musculoskeletal Research
Amputee Coalition of America
Hemipelvectomy and Hip-Disarticulation Amputee Support and Information Site
Limb Preservation Foundation- Denver, CO
Cancer Care – Sarcoma Treatment Update (a booklet)
National Cancer Institute – Sarcoma Progress Review Group 2004
(a roadmap for organization of sarcoma treatment and research)
Americans with Disabilities Act – Questions Answers
Social Security – Disability Programs
ACS Cancer Reference Info, click on Cancer Drug Guide
Access to Unapproved Drugs
American Cancer Society’s List of Information about Cancer Drugs
American Society of Health System Pharmacists
The Medicine Program – Accessing Free Medication
Needy Meds – Drug Assistance
Rx List – The Internet Drug Index
Neurology Journals from The Lancet
Oncology Journals from The Lancet
American Pain Society
Medscape Oncology Pain Learning Center
National Comprehensive Cancer Network Pain Guidelines –
These guidelines for physicians require registration and are free to everyone.
Pain Management Resource
World of Information on Pain
Cancernet’s Radiation Therapy and You
Staten Island, NY University Hospital – Radiation Oncology
Fermi National Accelerator Laboratory – Neutron Beam Radiation
Loma Linda, CA, University Medical Center – Proton Beam Radiotherapy
National Association for Proton Therapy
San Diego Gamma Knife Center
AACR – American Association for Cancer Research
Connective Tissue Oncology Society
Developing Cancer Therapies
Office of Rare Diseases
On-line Science and Medical Dictionaries
Pub Med – Free Searches of US National Library of Medicine
Quackwatch – Guide to Health Fraud
Sarcoma Alliance for Research through Collaboration
Great Comebacks – Information on bowel problems and ostomies http://www.greatcomebacks.com
Cancer Care – Counseling, Education and Comprehensive Resource Guide
Cancer Supportive Care Program – Comprehensive Coping Guide
Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
Look Good… Feel Better – Free Service for Women and Teens with Cancer
National Cancer Institute – Coping with Cancer
National Coalition for Cancer Survivorship – Advocacy
National Lymphedema Network
Oncology.com – Living with Cancer
Vital Options International – Telesupport Cancer Network and Radio Program
Cancer Support Community – Free Professional Support Services
National Institute’s of Health Chemotherapy and You
NCI – Understanding Cancer Angiogenesis
For Additional Support Group Information
Gastrointestinal Stromal Tumor (GIST)
GIST Support International
Gastrointestinal Stromal Tumor (GIST)
Life Raft Group
Kaposis Sarcoma Treatment
LMSarcoma Direct Research
National Leiomyosarcoma Foundation
Leiomyosarcoma News – LMSeAlerts
LMS Lifeline, with new Articles added regularly
Osteosarcoma and bone tumors
Bone Tumor Information
Osteosarcoma/Malignant Fibrous Histiocytoma of Bone Treatment
Ewing’s Sarcoma and Pediatric Cancers
Ewing’s Family of Tumors
The Alliance Against Alveolar Soft Part Sarcoma (ASPS)
Look Up Specific Soft Tissue Sarcoma Diagnosis Here
The National Cancer Institute’s Soft Tissue Sarcoma Home Page
The National Cancer Institute’s Bone Cancer Home Page
The National Cancer Institute’s Uterine Sarcoma Home Page
General Sarcoma Information
National Cancer Institute Adult Soft Tissue Treatment PDQ (Physician Data Query)
University of Pennsylvania OncoLink Sarcoma Page
British Columbia Cancer Agency – Bone and Connective Tissue Sarcomas
Dr. Steve Fadem’s Sarcoma Page – Doctor with Sarcoma
Surviving Cancer – Sarcoma Survivor’s Website
Management of Soft Tissue Sarcomas: An Overview and Update
Excellent article about soft tissue sarcoma in the journal The Lancet Oncology. There is a fee for the complete article.
MDAnderson Cancer Center Sarcoma Practice Guidelines
Sarcoma Specific Organizations
The Sarcoma Foundation of America
Connective Tissue Oncology Society
Desmoplastic Small Round Cell Tumor – Gift to the Cure will help DSRCT patients with information and support: http://www.gifttocure.org
Kristen Ann Carr Fund Sarcoma Forum
The Liddy Shriver Sarcoma Initiative
CureSearch (Children’s Oncology Group / National Childhood Cancer Foundation
Jennifer Hunter Yates Sarcoma Foundation
Karen Wyckoff Rein Sarcoma Fund
Northwest Sarcoma Foundation
Organizations outside the United States
SOS Desmoide Association
Additional Financial Resources
The Value of a Second Opinion
Here is a link to a full 2008 German article titled ‘The Value of Expert Second Opinion for the Diagnosis of Soft Tissue Sarcoma’
Definition of Second Opinion
The Sarcoma Alliance Assistance Fund reimburses expenses directly associated with getting a second opinion from a sarcoma specialist. The Sarcoma Alliance recommends that a second opinion be sought at a sarcoma center (see https://sarcomaalliance.org/sarcoma-centers/ ) or from a physician with expertise in the diagnosis and treatment of sarcoma and who has access to physicians in other specialties with similar expertise. The Assistance Fund does not pay for ongoing treatment subsequent to the second opinion.
A second opinion is when a patient seeks an evaluation from another physician to assess and make recommendations regarding the patient’s current diagnosis, treatment, and/or follow-up. This evaluation may be from a medical oncologist, pediatric oncologist, surgeon (surgical oncologist or orthopedic oncologist), radiation oncologist, and / or pathologist.
A single second opinion may include visits with multiple physicians on one day or over multiple days. A second opinion may include medical procedures and tests including laboratory assessments (i.e. blood work, staining of pathology slides), imaging (CT scans, MRIs, etc) or additional tests (biopsy, etc).
The second opinion may result in confirmation of current diagnosis and treatment plan or result in alternative diagnosis and/or treatment recommendations. A subsequent (additional) second opinion from another specialist may be desirable to resolve differences between the primary physician and the second opinion physician.
Once the second opinion evaluation is completed the patient may return to the primary physician for treatment or decide to continue treatment with the physician who provided the second opinion.
Also see: Encyclopedia of Surgery
Financial Assistance Links
National Cancer Institute – Financial Assistance for Cancer Care
Kylee’s Dancing Angels is a non-profit Foundation, established in honor and memory of Kylee Brooke Webster, who lost her battle to sarcoma in October 2013. Kaylee’s Dancing Angels provides grants to sarcoma patients who need financial support to find their “happy place.” http://www.kyleesdancingangels.org/find-your-happy-place/
American Cancer Society – The ACS has some programs to pay for travel costs, housing, etc while under treatment. You can reach the ACS at: 800-ACS.2345 or http://www.cancer.org/Treatment/ChildrenandCancer/WhenYourChildHasCancer/ChildrenDiagnosedwithCancerFinancialandInsuranceIssues/children-diagnosed-with-cancer-financial-and-insurance-issues-help-with-other-expenses
Cancer Care has some grants available.
Cancer Trials – Patient Care Costs
Consumer Guides for Getting and Keeping Health Insurance
The mission of Coverage for All is to simplify public and private health insurance eligibility information in order to help more people access coverage. They aim to centralize the distribution of information and eligibility requirements, encouraging more people to enroll, thereby lowering the ranks of the uninsured.
The HealthWell Foundation
The HealthWell FoundationR is a 501(c)(3) non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments. Our vision is to ensure that no patient goes without health care because they cannot afford it.
As patients are required to pay a larger share of health care costs each year, even many individuals with insurance find health care unaffordable. These patients face challenges affording the treatments they need to fight chronic and life-altering medical conditions. The HealthWell Foundation was established to address and help alleviate this problem.
Lazarex Cancer Foundation can help pay for clinical trial expenses
National Comprehensive Cancer Network – NCCN Virtural Reimbursement Resource Room
The oncology reimbursement landscape continues to present ever-evolving challenges for clinicians and others that work with patients with cancer. As a response to these ongoing challenges, help is available through the NCCN Virtual Reimbursement Resource Room. http://www.nccn.org/reimbursement_resource_room/default.asp
The Northwest Sarcoma Foundation
The Northwest Sarcoma Foundation is a non-profit organization committed to providing education and support to patients and families who are living with sarcoma. They strive to provide timely and accurate information regarding research and treatment options, and offer overall support by creating local networks throughout the Northwest. The Foundation is pleased to offer HELP$, a need-based financial aid program for adult sarcoma patients currently undergoing treatment. Its service area includes the five-state region of Washington, Oregon, Alaska, Montana and Idaho. For more information
Eric D. Davis Foundation — Provide the Assist grants help sarcoma patients who need to travel for treatment at UT-Southwestern Harold C. Simmons Comprehensive Cancer Center in Dallas or M.D. Anderson Cancer Center in Houston. http://www.ericddavisfoundation.org/apply-for-a-grant/
Patient Advocate Foundation – Legal Counseling for Insurance and Finance Issues
Patient Advocate Foundation, Co-Pay Relief Program
This program provides assistance for fees not covered by insurance and was expanded to include sarcoma patients. Patients must financially and medically qualify for the program.
A Shelter for Cancer Families
AOW – Airlines of the Web Medical Air Services
Angel Airlines for Cancer Patients – The mission and purpose of Angel Airlines For Cancer Patients’ is to ensure that no cancer patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance commercial airline transportation. http://www.angelairlinesforcancerpatients.org/
Air Charity Network coordinates free air transportation for people in need – 877-858-7788
Corporate Angel Network – Free Airline Flights for Cancer Patients
Patient Airlift Services – Patient AirLift Services covers flights in the entire northeast United States as far west as Ohio and as far south as Virginia. Typical flight times in our general aviation aircraft will range from two to three hours per leg, covering 200 to 600 miles. Flights originating or terminating beyond our primary coverage area will be conducted by our member pilots, or will be coordinated with other similar organizations to provide you with a seamless travel itinerary.
National Patient Travel Helpline – 800-296-1217
Department of Civic and Charitable Contributions
P.O. Box 33611
Dallas, TX 75235
Amshwand Sarcoma Cancer Foundation
Temporary, short term housing while at Texas Medical Center
Also in Houston
Temporary, free housing
Also in Houston
Housing specifically for adolescents and young adults (AYA) in Houston.
Hope Lodge – American Cancer Society’s Hope Lodge’s provides FREE lodging to cancer patients.
And a new Hope Lodge in New York City
Joe’s House – free or reduced housing nationwide
Los Angeles – Housing near Cedars-Sinai
National Association of Hospital Hospitality Houses, Inc
New York City, Miracle House.
$50 per day, and it includes free meals during the week
Ronald McDonald House provides inexpensive housing for families of ill children in many locations:
Cancer Legal Resource Center / Disability Rights Legal Center
Services for health and disability insurance; employment, estate planning and finances
Pediatric Financial Assistance Links
Pediatric Oncology Resource Center:
Children’s Cancer Fund of America
Foundation for Children with Cancer – Financial Assistance Program
United Health Care Children’s Foundation provides assistance for children with medical costs that are not covered by insurance.
Partnership for Prescriptions
Several hundred drug assistance programs stand ready to offer free or low-cost drugs to patients in need.
Toll Free Telephone: 1-888-477-2669; http://www.pparx.org
Federal and State Programs
If you are eligible for health coverage from your employer, but are unable to afford premiums, some states have premium assistance programs that can help pay for coverage.