Additional Resources

 

Invisible
Booklets

Cancer Care – Sarcoma Treatment Update booklet

National Cancer Institute – Sarcoma Progress Review Group 2004
 produced a roadmap for organization of sarcoma treatment and research

Cancer Information & Organizations

American Cancer Society

American Society of Clinical Oncology – Sarcoma specific information 

B+ Foundation

The Brain Tumor Society

Cancer Information Network

CancerNet: PDQ – NCI’s Comprehensive Cancer Database

The Doctors Doctor – Interpret Pathology Reports (for a fee)

Healthline – Cancer Channel

Josh Powell Foundation – The foundation’s mission is achieved by empowering the minds of newly diagnosed sarcoma patients, providing them with inspiration, encouragement, and motivation to keep going beginning on their first day of treatment.

National Cancer Institute – Understanding Cancer Angiogenesis Fact Sheet

National Comprehensive Cancer Network – Website specifically for patients

Nature Reviews Websites

Nikolas Ritschel Foundation

Oncolink – Cancer Information for Professionals and Lay Persons

Patient Power – Web-based radio shows with discussions about various aspects of sarcoma care and diagnosis

People Living With Cancer – A patient website from ASCO with doctor-approved patient information. 

Steve Dunn’s Cancer Guide – Patient Perspective

Cancer Support

Cancer Care – Counseling, Education and Comprehensive Resource Guide

Cancer Support Community – Free Professional Support Services

Cancer Supportive Care Program – Comprehensive Coping Guide

Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills

Imerman Angels Resource Packets – Contains links to resources for children and adults including stress-relieving activities, resources for cancer and the holidays, webinars, and more!
New Year, More Support Resource Packet
Holiday Resource Packet 

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 Institute of Health  –Chemotherapy and You

National Lymphedema Network

Navigating Your Care – Finding a Specialist

Oncology.com – Living with Cancer

The Patient Story – Sarcoma Stories

Vital Options International – Telesupport Cancer Network and Radio Program

Disability

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 – 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

Financial Assistance

American Cancer Society – The ACS has some programs to pay for travel costs, housing, etc while under treatment. You can reach the ACS at 1-800-ACS-2345

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.

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. 

Federal Government

Fiscal Tiger – Affording and Paying for Healthcare Guide
This guide covers a range of topics from medical bill basics to medical debt and resources for veterans.

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.

Genentech Patient Foundation

Kylee’s Dancing Angels – 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.”

Lazarex Cancer Foundation – Can help pay for clinical trial expenses

Lilly Cares Foundation – Patient assistance program to help patients with financial need receive their prescribed Eli Lilly and Company (Lilly) medications at no cost.

MD Anderson Financial Assistance

More Moments More Memories Foundation
For financial assistance for a patient and their caregiver for travel, lodging and food when they receive treatment in a clinical trial.

National Cancer Institute – Financial Assistance for Cancer Care

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.

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

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.

Sarcoma Patient Assistance – A 501(c)(3) non-profit organization focused on easing the financial burden of sarcoma patients at M.D. Anderson Cancer Center.

Social Security – If you have been diagnosed with sarcoma and are unable to work and earn a living, you may be eligible for Social Security Disability Benefits. The linked PDF document contains more information and related resources for Social Security benefits.

Team Maggie – A 501(c) organization that provides financial support for fertility preservation.

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.

Pediatric Financial Assistance

Arielle Anacker Cancer Foundation – Financial assistance pediatric cancer patients and their families

Children’s Cancer Fund of America

Foundation for Children with Cancer – Financial Assistance Program

Pediatric Oncology Resource Center – Transportation and Educational Scholarships

United Health Care Children’s Foundation (UHCCF) – 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

General Sarcoma Information

British Columbia Cancer Agency – Bone and Connective Tissue Sarcomas

The Doctor’s Doctor – Look up specific soft tissue sarcoma diagnoses here

Dr. Steve Fadem’s Sarcoma Page – Doctor with Sarcoma

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

The National Cancer Institute’s Soft Tissue Sarcoma Home Page

National Cancer Institute Adult Soft Tissue Treatment PDQ (Physician Data Query)

Surviving Cancer – Sarcoma Survivor’s Website

University of Pennsylvania OncoLink Sarcoma Page

Housing

Airbnb in Partnership with the Cancer Support Community – Free housing for cancer patients and caregivers traveling to treatment.
Must meet geographic & income criteria. See the website for more details.

A Shelter for Cancer Families (ASCF) – Temporary, short-term housing while seeking medical treatment in Houston, Texas, USA.

Cedars-Sinai “Where to Stay” Page  Lodging near Cedars-Sinai in Los Angeles, California, USA. Select hotels may offer special rates for patients and their families.

Dan’s House of Hope –  Housing specifically for adolescents and young adults (AYA) in Houston.

Hope Lodge – American Cancer Society’s Hope Lodge program provides FREE lodging to cancer patients in select cities around the U.S.

Hospitality Apartments – Temporary, free housing in Houston, Texas, USA.

Joe’s House – Free or reduced housing nationwide

Miracle House – Lodging in New York City,  $50 per day, free meals included during the week

National Association of Hospital Hospitality Houses, Inc. 

Ronald McDonald House – Provides inexpensive housing for families of ill children in many locations

Journals

Hindawi – Full texts of all articles from the journal devoted to sarcoma. 

The Lancet – Features Neurology Journals and Oncology Journals

Legal Assistance

Cancer Legal Resource Center and Disability Rights Legal Center
Services for health and disability insurance, employment, estate planning, and finances

Pain Management
Sarcoma Organizations

International

Sarcoma Patients EuroNet (Europe)

Sarcoma UK (United Kingdom) – Sarcoma UK also has a Support Line. Anybody with sarcoma may contact their line’s nurses and occupational therapists via telephone, text, or email.

SOS Desmoide Association (France)

United States

The Sarcoma Foundation of America

Connective Tissue Oncology Society
http://ctos.org

Desmoplastic Small Round Cell Tumor – Gift to the Cure will help DSRCT patients with information and support.

Josh Powell Foundation – empowering the minds of newly diagnosed sarcoma patients, providing them with inspiration, encouragement, and motivation to keep going beginning on their first day of treatment.

Kristen Ann Carr Fund Sarcoma Forum                                                     

The Liddy Shriver Sarcoma Initiative – website is no longer updated but contains lots of rich sarcoma-related information.

CureSearch (Children’s Oncology Group / National Childhood Cancer Foundation

Jennifer Hunter Yates Sarcoma Foundation

Karen Wyckoff Rein Sarcoma Fund

Northwest Sarcoma Foundation

Sara’s Cure

Sarcoma Coalition

Second Opinions

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 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

Side Effects

Great Comebacks – Information on bowel problems and ostomies

Subtype-Specific

Gastrointestinal Stromal Tumor (GIST)

GIST Support International

Life Raft Group

Kaposi Sarcoma

Kaposi Sarcoma

Kaposi’s Sarcoma Treatment

Leiomyosarcoma

Leiomyosarcoma

LMSarcoma Direct Research

National Leiomyosarcoma Foundation

National Leiomyosarcoma Foundation Programs include:

  1. The Cancer Cell Line Project
  2. The International LMS Research Roundtable initiative of the National Leiomyosarcoma Foundation launching in 2019.

Liposarcoma

Liposarcoma Information                                                                                                                                                                

Osteosarcoma and bone tumors

Bone Tumor Information

Ewing Sarcoma and Pediatric Cancers

Ewing Family of Tumors

Osteosarcoma

Osteosarcoma Information Hotline – A free of cost service of the Osteosarcoma Institute, the hotline provides general guidance about the treatment of osteosarcoma (including clinical trials) in consultation with sarcoma experts serving on the board of the Osteosarcoma Institute. This hotline resource helps patients, their families, and physicians. They can provide referrals for your care if you wish, but do not provide medical care or specific medical advice.

Osteosarcoma/Malignant Fibrous Histiocytoma of Bone Treatment

Rhabdomyosarcoma

Childhood Rhabdomyosarcoma

Synovial Sarcoma

Live for Others Foundation

Travel

A Shelter for Cancer Families

Air Charity Network coordinates free air transportation for people in need – 877-858-7788

Airlines of the Web Medical Air Services – (AOW)

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.

Angel Flight East (AFE)- Free air transportation to children and adults seeking medical treatment far from home. Volunteer pilots use their own aircraft to bring patients to appointments in the Northeastern region of the U.S. For flights outside of this region, AFE can put you in contact with other volunteer pilot organizations.

Corporate Angel Network – Free Airline Flights for Cancer Patients

Mercy Medical Angels – Patient Travel Referral Program

Patient Airlift Services (PALS) – PALS is a 501(c)(3) organization that was founded in 2010 and has since flown over 23,000 flights for individuals and families in need. They have over 700 volunteer pilots across 43 states who, along with corporate and commercial partners, enable the organization to provide comprehensive door-to-door transportation assistance including both air and ground transportation. Services are completely free of charge and there is no limit to the number of times a person or family can fly with them. To learn more or request a flight, please visit their website.

Sarcoma Oma Foundation – provides travel-related financial assistance patients seeking sarcoma-related medical care.

Southwest Airlines
Department of Civic and Charitable Contributions
P.O. Box 33611
Dallas, TX 75235
214-792-1300