Educational Resources

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

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

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

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

Subtype Specific Information

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

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