Online Support

Online Sarcoma Support Groups

Annotations by Bruce Shriver

As was stated in our last issue of ESUN, being told that you, a loved one, or a friend has any cancer, let alone one of the types of sarcoma, can be a frightening and stressful experience. All sorts of questions immediately spring to mind. "Do people survive this type of cancer?" "Will I die?" "What will happen to my family?" There is an entire new language to learn—CT Scan, MRI, bone scan, pathology report, chemotherapy, side effects, dosing, radiation therapy and metastasis. The list seems endless. Most important, it would be nice to talk to someone who has gone through what you're about to go through—someone who has "been there". There are a many resources on the web, ranging from medical information to support groups. Each month we will give an overview of some of these resources. We hope this will help you find a few that are useful to you. In this issue we discuss several online sarcoma support groups. Patients and their caregivers, family members, loved ones and friends can all benefit from becoming involved in an online support group. Sometimes medical professionals also join support groups and contribute to the ongoing discussions.

Association of Cancer Online Resources (ACOR.org)

An ACOR “Mailing List” is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are “posted” by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an “online discussion” of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting. There are currently seven ACOR lists dealing with sarcoma: KAPOSI, L-M-SARCOMA (leiomyosarcoma), L-SARCOMA (liposarcoma), E-SARCOMA (Ewing’s Sarcoma), SARCOMA, RHABDO-KIDS (rhabdomyosarcoma), and OSTEO-SARCOMA (osteosarcoma). You should definitely give serious consideration to joining one of these or the many other ACOR support groups if you are either a patient or a caregiver. They provide you with a network of friends who are often dealing with some of the very issues you are. Click here to see the entire set of ACOR lists.

CancerSource.com

A CancerSource.com “Message Board” is a free discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. “Moderated” means that when a message is posted, it will not immediately appear in the list of messages. Instead, a “moderator” will review the message before making it publicly available. Just as with the ACRO “mailing lists” discussed about, posted messages provide a forum where you can ask questions, talk, listen, and share your ideas and concerns. Currently there are two sarcoma-related CancerSource.com message boards: Kaposi’s Sarcoma and Soft Tissue Sarcoma. Click here to see the complete list of CancerSource.com message boards.

GIST Support International (GSI)

GSI is dedicated to the support of patients, families, and friends dealing with Gastrointestinal Stromal Tumors (GIST) and to the ongoing research required to treat and cure this disease. GIST belongs to the general class of cancers called sarcomas. You can join an online support group dealing with GIST at GSI’s website where you will meet people from around the world who are dealing with GIST.

msn.Groups

msn.Groups provide a number of resources in additional to messaging. The Rhabdo kids group on msn.Groups is focused on rhabdomyosarcoma.

Yahoo!HealthGroups

There are several Yahoo!HealthGroups lists that are focused on sarcoma. These groups function like the ACOR mailing lists and the CancerSource.com message boards. Among those you might consider joining are: E-SARCOMA-UK, Endometrial Stomal Sarcoma, Endometrialstromalsarcoma (Uterine Endometrial stromal sarcoma), Ewing's Sarcoma, ewingssarcoma, Kaposi Sarcoma, LMSarcoma (leiomyosarcoma), Malignant Fibrous Histiocytoma (MFH). and Mesenchymal Chondrosarcoma.

There are some websites that provide an online discussion mechanism, called a “forum”, that is similar to message posting systems described above. One such website is the TAAASPS site.

The Alliance Against Alveolar Soft Part Sarcoma (TAAASPS)

The TAAASPS website was developed to communicate information about the very rare type of cancer called Alveolar Soft Part Sarcoma (ASPS or ASP-sarcoma). The TAAASPS website contains information about a charitable foundation that was formed to promote advocacy and research to benefit patients with alveolar soft part sarcoma. Among other things the site contains a discussion of Treatment Options and supports a Discussion Forum.

Adolescents and Young Adults

There were a number of websites discussed in our previous issues of ESUN, which, even though they are not sarcoma specific, have proved helpful for our adolescent and young adults patients. You can view the websites, which are in the For the Newly Diagnosed article, by clicking here. To this list, we add the following website.

SIBLINKS

SIBLINKS is a website for “young people who have or have had a family member affected by cancer. SIBLINKS is for young people aged 13-25 years who are siblings or sons and daughters of people affected by cancer.”

Missing Websites

We have undoubtedly missed some online support groups or forums. Please let us know of any online support groups or forums anywhere in the world that deal with sarcomas that are not listed above. We will then update the list in one of our future issues of ESUN. Click here to send us a note.