Additional Resources

Sarcoma – Full texts of all articles from the journal devoted to sarcoma are available at:

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

Bone Cancers

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

Drug Information

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

Pain Management

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

Radiation Therapies

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

Side Effects


Great Comebacks – Information on bowel problems and ostomies


Other Resources

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

Navigating Your Care – 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

Life Raft Group

Kaposis Sarcoma

Kaposi’s Sarcoma

Kaposi’s 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


Childhood Rhabdomyosarcoma

The Alliance Against Alveolar Soft Part Sarcoma (ASPS)

Synovial Sarcoma

Live for Others Foundation


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:

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 ) 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

Arielle Anacker Cancer Foundation

Lilly Cares Foundation and Patient One

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.”

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

Cancer Care has some grants available.

Cancer Trials – Patient Care Costs

Consumer Guides for Getting and Keeping Health Insurance

Coverage for All

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.

Federal Government

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.

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.

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.

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

Southwest Airlines
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
Houston, Texas

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:

Legal Assistance

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.

Prescription Costs
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;

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.