Additional Resources
Invisible
Bone Cancers
Bone Marrow & Cancer Foundation – For more information about the foundation and its programs, please visit their website or view their Mission and Programs Summary.
The Center for Orthopedic Oncology and Musculoskeletal Research
Hemipelvectomy and Hip-Disarticulation Amputee Support and Information Site
Limb Preservation Foundation – Denver, CO
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 Society of Clinical Oncology – Sarcoma specific information
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
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
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
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 Recovery Foundation – Has a Women’s Cancer Fund that provides limited financial assistance (up to $250/year) to women in active cancer treatment. Helps cover the cost of rent and utilities including phone bills.
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.
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.
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.
The SAMFund – Provides grants to young adult cancer survivors (ages 21-39) to help cover the costs of post-treatment financial needs including medical bills, car insurance/premiums, gym memberships, continuing education, mental health expenses, and rent/mortgage payments. Grants applications are accepted in the spring and the fall.
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
The Andrew McDonough B+ Foundation – Provides financial assistance to families of children with cancer.
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
Live Like Bella Childhood Cancer Foundation – Provides financial assistance to families whose children are undergoing cancer treatment to help cover expenses including those for co-pays, groceries, gas, utilities, etc. They also provide support and financial assistance for memorials.
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
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
Medscape Oncology Pain Learning Center
National Comprehensive Cancer Network Pain Guidelines –
These guidelines for physicians require registration and are free to everyone.
Radiation Therapies
Cancernet’s Radiation Therapy and You
Fermi National Accelerator Laboratory – Neutron Beam Radiation
Loma Linda, CA, University Medical Center – Proton Beam Radiotherapy
National Association for Proton Therapy
Staten Island, NY University Hospital – Radiation Oncology
Research
American Association for Cancer Research (AACR)
Connective Tissue Oncology Society
Office of Rare Diseases
http://rarediseases.info.nih.gov
Pub Med – Free Searches of US National Library of Medicine
Quackwatch – Guide to Health Fraud
Sarcoma Alliance for Research through Collaboration
Understanding Medical Words: A Tutorial from the National Library of Medicine
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
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)
Kaposi Sarcoma
Leiomyosarcoma
National Leiomyosarcoma Foundation
National Leiomyosarcoma Foundation Programs include:
- The Cancer Cell Line Project
- The International LMS Research Roundtable initiative of the National Leiomyosarcoma Foundation launching in 2019.
Liposarcoma
Osteosarcoma and bone tumors
Ewing Sarcoma and Pediatric Cancers
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
Synovial Sarcoma
Travel
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 – Medical Transportation Grant Program (MTGP) provides roundtrip tickets to select nonprofit hospitals and healthcare organizations. For a full list of participating hospitals and organizations, please visit their website. You may also contact the Southwest Airlines directly at:
Department of Civic and Charitable Contributions
P.O. Box 33611
Dallas, TX 75235
214-792-1300