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
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/
B+ Foundation
http://bepositive.org
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
https://www.healthline.com/health/cancer?ref=global
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.
https://www.joshpowellfoundation.org/
National Comprehensive Cancer Network – Website specifically for patients
https://www.nccn.org/patients/guidelines/cancers.aspx
Nature Reviews Websites
https://www.nature.com/nrc/
Nikolas Ritschel Foundation
http://www.nikolasritschelfoundation.org/
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
http://www.amputee-coalition.org
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)
https://permanent.access.gpo.gov/lps122662/2004sarcoma.pdf
Disability
Americans with Disabilities Act – Questions Answers
https://www.ada.gov/2010_regs.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
http://www.themedicineprogram.com
Needy Meds – Drug Assistance
http://www.needymeds.com
Rx List – The Internet Drug Index
http://www.rxlist.com
Journals
Neurology Journals from The Lancet
http://www.thelancet.com/journals/laneur/onlineFirst
Oncology Journals from The Lancet
http://www.thelancet.com/journals/lanonc/onlineFirst
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
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
https://protons.com/
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
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
Understanding Medical Words: A Tutorial from the National Library of Medicine
https://medlineplus.gov/medicalwords.html
Side Effects
Great Comebacks – Information on bowel problems and ostomies
http://www.greatcomebacks.com
Purdue University Global – Managing Chemotherapy Side Effects: A Guide for Patients
https://www.purdueglobal.edu/blog/nursing/managing-chemotherapy-side-effects/
SideEQ
https://www.mysideeq.org
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 Support Community – Free Professional Support Services
http://cancersupportcommunity.org/
Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
http://www.canceradvocacy.org/toolbox/
Look Good…Feel Better – Free Service for Women and Teens with Cancer
http://lookgoodfeelbetter.org
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
Navigating Your Care
https://www.lartruvo.com/finding-a-specialist/
Oncology.com – Living with Cancer
http://www.oncology.com
Patient Story
https://www.thepatientstory.com/cancers/sarcoma
Vital Options International – Telesupport Cancer Network and Radio Program
http://www.vitaloptions.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
Gastrointestinal Stromal Tumor (GIST)
GIST Support International
http://www.gistsupport.org
Life Raft Group
http://liferaftgroup.org/
Kaposi Sarcoma
Kaposi Sarcoma
http://www.thebody.com/treat/kaposis.html
Kaposi’s Sarcoma Treatment
https://www.cancer.gov/types/soft-tissue-sarcoma/patient/kaposi-treatment-pdq
Leiomyosarcoma
Leiomyosarcoma
http://www.leiomyosarcoma.info
LMSarcoma Direct Research
http://www.lmsdr.org/
National Leiomyosarcoma Foundation
http://www.nlmsf.org
National Leiomyosarcoma Foundation Programs include:
- The Cancer Cell Line Project https://leiomyosarcoma.info/cancer-cell-line-project/
- The International LMS Research Roundtable initiative of the National Leiomyosarcoma Foundation launching in 2019.
Liposarcoma
Liposarcoma http://realpatientsspeak.com/liposarcoma/
Osteosarcoma and bone tumors
Bone Tumor Information
http://www.bonetumor.org
Ewing Sarcoma and Pediatric Cancers
http://www.cureourchildren.org
Ewing Family of Tumors
https://www.cancer.gov/types/bone/hp/ewing-treatment-pdq
Osteosarcoma
http://www.cancerindex.org/ccw/guide2o.htm
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.
https://osteosarcoma.info/
Osteosarcoma/Malignant Fibrous Histiocytoma of Bone Treatment
http://www.cancer.gov/cancertopics/pdq/treatment/osteosarcoma
Rhabdomyosarcoma
Childhood Rhabdomyosarcoma
http://www.cancer.gov/cancertopics/types/childrhabdomyosarcoma
Synovial Sarcoma
Live for Others Foundation
http://l4of.org
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
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. https://www.joshpowellfoundation.org/
Kristen Ann Carr Fund Sarcoma Forum http://www.sarcoma.com
The Liddy Shriver Sarcoma Initiative – website is no longer updated but contains lots of rich sarcoma-related information.
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://www.nwsarcoma.org
Sara’s Cure
https://sarascure.org/
Sarcoma Coalition
https://sarcomacoalition.org/
Organizations outside the United States
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.
https://sarcoma.org.uk/
SOS Desmoide Association (France)
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.wpengine.com/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
Arielle Anacker Cancer Foundation
http://www.cancerbills.org
Lilly Cares Foundation and Patient One
https://www.lartruvo.com/resources-and-financial-support
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
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
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. http://www.ericddavisfoundation.org/apply-for-a-grant/
Federal Government
http://www.genome.gov/11008842
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. https://www.fiscaltiger.com/medical-debt-resources/
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/
Genentech Patient Foundation
http://www.gene.com/patients/patient-foundation
Lazarex Cancer Foundation can help pay for clinical trial expenses
http://www.lazarex.org/
MD Anderson Financial Assistance
https://www.sarcomapatientassistance.com/
More Moments More Memories Foundation
https://www.dbqfoundation.org/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 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
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
http://www.nwsarcoma.org
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
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.
https://www.sarcomapatientassistance.com/
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.
https://www.teammaggieforacure.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/
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.
https://angelflighteast.org/
Corporate Angel Network – Free Airline Flights for Cancer Patients
http://www.CorpAngelNetwork.org/
National Patient Travel
Mercy Medical Angels – Patient Travel Referral Program
https://request.patienttravel.org/travel-request
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/
Sarcoma Oma Foundation – provides travel-related financial assistance patients seeking sarcoma-related medical care.
https://www.sarcoma-oma.org//
Southwest Airlines
Department of Civic and Charitable Contributions
P.O. Box 33611
Dallas, TX 75235
214-792-1300
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 website for more details.
https://www.cancersupportcommunity.org/airbnb
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.ped-onc.org/resources/airlineflights.html (transportation)
http://www.ped-onc.org/scholarships/index.html (educational scholarships)
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.
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