The Alliance strives to provide guidance and promote understanding for patients and caregivers during this difficult journey. Below you’ll find links to various resources to aid in your learning and research to understand sarcoma.
Downloadable 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.
Glossary of Terms
To help with understanding terminology and concepts when faced with a sarcoma diagnosis, some links are below with definitions of key terms that are related to disease, treatment, and general health.
Journals
Hindawi – Full texts of all articles from the journal devoted to sarcoma.
The Lancet – Features Neurology Journals and Oncology Journals
Podcasts and Shows
Cancer
Black Cancer – Hosted by Jodi-Ann Bury, this podcast explores the cancer journeys of people of color, incorporating narratives of race, health, life, and wisdom.
Cancer Health Equity NOW – Hosted by Dante Morehead for the Office of Community Outreach and Engagement (OCOE) at Fred Hutch & the University of Washington. This podcast discusses topics related to reducing health disparities and inequities that exist in health and cancer care.
Cancer Out Loud – A podcast by Cancer Care.
Living with Scanxiety – Hosted by Rosaria Kozar, whose son, Brody, was diagnosed with rhabdomyosarcoma.
Talk About Cancer Podcast – Hosted by Serena Hu, this is a weekly cancer, mental health, and personal stories podcast.
Sarcoma
I Am More Than This – Hosted by Sarcoma UK, this podcast features sarcoma stories as well as answers to frequently asked questions. Available on Apple Podcasts, Soundcloud, and Spotify.
Let’s Talk About Sarcoma – A podcast co-created by Sock it to Sarcoma and the Cooper Rice-Brading Foundation.
The Patient Story – Sarcoma stories.
Sarcoma Insight – Hosted by orthopedic surgeons Dr. Elyse Brinkmann & Dr. Izuchukwu Ibe, this is an educational podcast created for sarcoma patients, their loved ones, and anybody else who’d like to learn about sarcoma. Available on Apple Podcasts, Soundcloud, and Spotify.
Sarcoma Sisters – Hosted by pediatric oncologists, Dr. Lisa Kopp and Dr. Wendy Allen-Rhoades.
Radiation Therapy Information
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 Medicine
Research
American Association for Cancer Research (AACR)
Connective Tissue Oncology Society
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
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
American Cancer Society Treatments and Side Effects
Great Comebacks – Information on bowel problems and ostomies
Subtype Specific Information
Chondrosarcoma
Gastrointestinal Stromal Tumor (GIST)
Kaposi Sarcoma
Kaposi’s Sarcoma Treatment – National Cancer Institute
Leiomyosarcoma
LMSarcoma Direct Research (LMSDR)
National Leiomyosarcoma Foundation (NLMSF)
Liposarcoma
Osteosarcoma and bone tumors
Ewing Sarcoma and Pediatric Cancers
Rhabdomyosarcoma
Synovial Sarcoma
Sarcoma experts can help you understand.
If you are on a journey with sarcoma, make sure to see a sarcoma expert.
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