Additional Resources

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

Resources

American Cancer Society
http://www.cancer.org

ASCO – Sarcoma specific information:
People Living With Cancer – A patient website from the Amercian Society of Clinical Oncology (ASCO)
http://www.cancer.net/

The Brain Tumor Society
http://www.tbts.org

Cancer Information Network
http://www.cancernetwork.com

CancerNet: PDQ – NCI’s Comprehensive Cancer Database
http://www.cancer.gov/cancertopics/pdq

The Doctors Doctor – Interpret Pathology Reports (for a fee)
http://www.thedoctorsdoctor.com/f_home.html

Steve Dunn’s Cancer Guide – Patient Perspective
http://cancerguide.org

Healthline – Cancer Channel
http://www.healthline.com/channel/cancer.html

InteliHealth – Comprehensive Health Information
http://www.intelihealth.com

National Comprehensive Cancer Network – Website specifically for patients
http://www.nccn.com/

Nature Reviews Websites
http://www.nature.com/nrc/info/info_links.html

Oncolink – Cancer Information for Professionals and Lay Persons
http://www.oncolink.org

Patient Power – Web based radio shows with discussion about various aspects of sarcoma care and diagnosis
http://www.patientpower.info/listenhealthtopiclist.asp?Topic=Sarcoma

Bone Cancers

The Center for Orthopedic Oncology and Musculoskeletal Research
http://sarcoma.org/Sarcoma/

Amputee Coalition of America

Home

Hemipelvectomy and Hip-Disarticulation Amputee Support and Information Site
http://www.hphdhelp.org

Limb Preservation Foundation- Denver, CO
http://www.limbpreservation.org

Booklets
Cancer Care – Sarcoma Treatment Update (a booklet)
http://www.cancercare.org/pdf/booklets/ccc_sarcoma.pdf

National Cancer Institute – Sarcoma Progress Review Group 2004
(a roadmap for organization of sarcoma treatment and research)
http://planning.cancer.gov/library/2004sarcoma.pdf

Disability
Americans with Disabilities Act – Questions Answers
http://www.usdoj.gov/crt/ada/qandaeng.htm

Social Security – Disability Programs
http://www.ssa.gov/disability/

Drug Information
ACS Cancer Reference Info, click on Cancer Drug Guide
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/index

Access to Unapproved Drugs
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm176098.htm

American Cancer Society’s List of Information about Cancer Drugs
http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index

American Society of Health System Pharmacists
http://www.ashp.org

The Medicine Program – Accessing Free Medication

Home

Needy Meds – Drug Assistance
http://www.needymeds.com

Rx List – The Internet Drug Index
http://www.rxlist.com

Journals

Neurology Journals from The Lancet
Oncology Journals from The Lancet
Pain Management
American Pain Society
http://www.ampainsoc.org
Medscape Oncology Pain Learning Center
http://www.medscape.org/resource/pain/cme
National Comprehensive Cancer Network Pain Guidelines –
These guidelines for physicians require registration and are free to everyone.
http://www.nccn.org/professionals/physician_gls/pdf/pain.pdf
Pain Management Resource
http://www.partnersagainstpain.com
World of Information on Pain
http://www.pain.com
Radiation Therapies
Cancernet’s Radiation Therapy and You
http://www.cancer.gov/publications/patient-education/radiation-therapy-and-you
Staten Island, NY University Hospital – Radiation Oncology
http://www.siuh.edu/Clinical-Services/Radiation-Oncology.aspx
Fermi National Accelerator Laboratory – Neutron Beam Radiation
http://adwww.fnal.gov/www/ntf/ntf_home.html
Loma Linda, CA, University Medical Center – Proton Beam Radiotherapy
http://www.protons.com/index.html
National Association for Proton Therapy
http://www.proton-therapy.org
San Diego Gamma Knife Center
http://www.sdgkc.com
Research
AACR – American Association for Cancer Research
http://www.aacr.org
CancerProtocol.com
http://www.cancerprotocol.com
Connective Tissue Oncology Society
www.ctos.org
Developing Cancer Therapies
http://ctep.cancer.gov/
Office of Rare Diseases
http://rarediseases.info.nih.gov
On-line Science and Medical Dictionaries
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
Pub Med – Free Searches of US National Library of Medicine
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
Quackwatch – Guide to Health Fraud
http://www.quackwatch.com
Sarcoma Alliance for Research through Collaboration
http://www.sarctrials.org
Side Effects
Great Comebacks – Information on bowel problems and ostomies http://www.greatcomebacks.com
Other Resources
Cancer Care – Counseling, Education and Comprehensive Resource Guide
http://www.cancercare.org
Cancer Supportive Care Program – Comprehensive Coping Guide
http://www.cancersupportivecare.com
Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
http://www.canceradvocacy.org/toolbox/
Fatigue
http://www.cancerfatigue.org
Look Good… Feel Better – Free Service for Women and Teens with Cancer

Home


National Cancer Institute – Coping with Cancer
http://www.cancer.gov/cancerinfo/coping
National Coalition for Cancer Survivorship – Advocacy
http://www.canceradvocacy.org
National Lymphedema Network
http://www.lymphnet.org
Oncology.com – Living with Cancer
http://www.oncology.com
Vital Options International – Telesupport Cancer Network and Radio Program

Home


Cancer Support Community – Free Professional Support Services
http://cancersupportcommunity.org/
Miscellaneous
National Institute’s of Health Chemotherapy and You
http://www.cancer.gov/publications/patient-education/chemo-and-you
NCI – Understanding Cancer Angiogenesis
http://www.cancer.gov/cancertopics/treatment/types/biological-therapies/angiogenesis-inhibitors-fact-sheet

For Additional Support Group Information

GIST

Gastrointestinal Stromal Tumor (GIST)
GIST Support International
http://www.gistsupport.org

Gastrointestinal Stromal Tumor (GIST)
Life Raft Group
http://liferaftgroup.org/
Kaposis Sarcoma

Kaposi’s Sarcoma
http://www.thebody.com/treat/kaposis.html

Kaposi’s Sarcoma Treatment
http://www.cancer.gov/cancertopics/pdq/treatment/kaposis

Leiomyosarcoma

Leiomyosarcoma
http://www.leiomyosarcoma.info

LMSarcoma Direct Research
http://www.lmsdr.org/

National Leiomyosarcoma Foundation
http://www.nlmsf.org

Leiomyosarcoma News – LMSeAlerts
http://health.groups.yahoo.com/groups/LMSeAlerts/

LMS Lifeline, with new Articles added regularly
http://lmslifeline.com/

Osteosarcoma and bone tumors

Osteosarcoma
http://www.cancerindex.org/ccw/guide2o.htm

Bone Tumor Information
http://www.bonetumor.org

Osteosarcoma/Malignant Fibrous Histiocytoma of Bone Treatment
http://www.cancer.gov/cancertopics/pdq/treatment/osteosarcoma

Ewing’s Sarcoma and Pediatric Cancers
http://www.cureourchildren.org

Ewing’s Family of Tumors
http://www.cancer.gov/cancertopics/types/ewings

Rhabdomyosarcoma

Childhood Rhabdomyosarcoma
http://www.cancer.gov/cancertopics/types/childrhabdomyosarcoma

The Alliance Against Alveolar Soft Part Sarcoma (ASPS)
http://www.alveolarspsarcoma.net

Other

Look Up Specific Soft Tissue Sarcoma Diagnosis Here
http://www.thedoctorsdoctor.com/diseases/soft_tissue_tumors.htm

The National Cancer Institute’s Soft Tissue Sarcoma Home Page
http://www.cancer.gov/cancerinfo/types/soft-tissue-sarcoma

The National Cancer Institute’s Bone Cancer Home Page
http://www.cancer.gov/cancertopics/types/bone

The National Cancer Institute’s Uterine Sarcoma Home Page
http://www.cancer.gov/cancerinfo/types/uterinesarcoma

General Sarcoma Information

National Cancer Institute Adult Soft Tissue Treatment PDQ (Physician Data Query)
http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1

University of Pennsylvania OncoLink Sarcoma Page
http://www.oncolink.com/types/types.cfm?c=17

British Columbia Cancer Agency – Bone and Connective Tissue Sarcomas
http://www.bccancer.bc.ca/PPI/TypesofCancer/Sarcomas/default.htm

Dr. Steve Fadem’s Sarcoma Page – Doctor with Sarcoma
http://nephron.com/sarcoma.html

Surviving Cancer – Sarcoma Survivor’s Website
http://medicalresearch.tripod.com/medicalresearch

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.
http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(00)00016-4/abstract

MDAnderson Cancer Center Sarcoma Practice Guidelines
http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/soft-tissue-sarcoma/treatment/index.html

Sarcoma Specific Organizations

The Sarcoma Foundation of America
http://www.curesarcoma.org

Connective Tissue Oncology Society
http://ctos.org

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
http://www.sarcoma.com

The Liddy Shriver Sarcoma Initiative
http://sarcomahelp.org

CureSearch (Children’s Oncology Group / National Childhood Cancer Foundation
http://curesearch.org

Jennifer Hunter Yates Sarcoma Foundation
http://jenniferhunteryatessarcomafoundation.org

Karen Wyckoff Rein Sarcoma Fund
http://reininsarsoma.org

Northwest Sarcoma Foundation
http://nwsarcoma.org

Organizations outside the United States

SOS Desmoide Association
http://www.sos-desmoide.asso.fr

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’
http://onlinelibrary.wiley.com/doi/10.1002/jso.20897/pdf

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

http://www.surgeryencyclopedia.com/Pa-St/Second-Opinion.html

Financial Assistance Links

National Cancer Institute – Financial Assistance for Cancer Care
http://www.cancer.gov/cancertopics/coping/financial-legal

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

http://www.cancer.org/Treatment/FindingandPayingforTreatment/ManagingInsuranceIssues/HealthInsuranceandFinancialAssistancefortheCancerPatient/index

Cancer Care has some grants available.
http://www.cancercare.org/get_help/assistance/cc_financial.php

Cancer Trials – Patient Care Costs
http://cancertrials.nci.nih.gov/clinicaltrials/developments/page9

Consumer Guides for Getting and Keeping Health Insurance
http://healthinsuranceinfo.net

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
http://www.genome.gov/11008842

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.
http://healthwellfoundation.org/

Lazarex Cancer Foundation can help pay for clinical trial expenses
http://www.lazarex.org/

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
visit:http://www.nwsarcoma.org/index.php?option=com_content&view=article&id=49&Itemid=58

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
http://www.patientadvocate.org

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.
http://www.copays.org

Travel

A Shelter for Cancer Families
http://www.cancerfamilies.org/

AOW – Airlines of the Web Medical Air Services
http://www.flyaow.com/airmed.htm

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
http://aircharitynetwork.org/

Corporate Angel Network – Free Airline Flights for Cancer Patients
http://www.CorpAngelNetwork.org/

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.
http://www.palservices.org/

National Patient Travel Helpline – 800-296-1217
http://www.PatientTravel.org

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

Housing

Amshwand Sarcoma Cancer Foundation
Temporary, short term housing while at Texas Medical Center
Houston, Texas
www.sarcomacancer.org

Also in Houston
Temporary, free housing
http://hospitalityapartments.blogspot.com

Also in Houston
Housing specifically for adolescents and young adults  (AYA) in Houston.
http://www.danshouseofhope.org/

Hope Lodge – American Cancer Society’s Hope Lodge’s provides FREE lodging to cancer patients.
http://www.cancer.org/docroot/subsite/hopelodge/index.asp

And a new Hope Lodge in New York City
http://www.recordonline.com/apps/pbcs.dll/article?AID=/20080806/HEALTH/808050347/-1/HEALTH

Joe’s House – free or reduced housing nationwide
http://www.joeshouse.org

Los Angeles – Housing near Cedars-Sinai
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Documents/CSPatEdLocaHotelsCP0005.pdf

National Association of Hospital Hospitality Houses, Inc
http://www.nahhh.org/

New York City, Miracle House.
$50 per day, and it includes free meals during the week
http://www.miraclehouse.org/

Ronald McDonald House provides inexpensive housing for families of ill children in many locations:
http://www.rmhc.com/who-we-are/chapter-search/

Legal Assistance

Cancer Legal Resource Center / Disability Rights Legal Center
Services for health and disability insurance; employment, estate planning and finances
http://www.CancerLegalResourceCenter.org
http://www.DisabilityRightsLegalCenter.org

Pediatric Financial Assistance Links

Pediatric Oncology Resource Center:
http://www.acor.org/ped-onc/cfissues/financehelp/finhelp.html

Children’s Cancer Fund of America
http://www.ccfoa.org/

Foundation for Children with Cancer – Financial Assistance Program
http://www.childrenwithcancer.org/?page_id=53

United Health Care Children’s Foundation provides assistance for children with medical costs that are not covered by insurance.
http://www.uhccf.org/apply/learn-more-about-medical-grants/application-process/

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; 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.