There is a mailing list (listserv) Support Group for ATC patients and their families, available through the web site of ThyCa: Thyroid Cancer Survivors’ Association.
Here is some information about this list from the founders and moderators, Cheri and Rose (spouse of Clayton, a long-term survivor):
“We are glad you have found your way to the Anaplastic Thyroid Cancer (ATC) listserv. We hope that you will find answers to your questions. We know you will find support. Several survivors participate in the group, including some survivors of more than five years. Clayton was a 14-year 'survivor' of ATC. He passed away in 2012 from a cause unrelated to ATC. Diagnosed in November of 1997, he had conventional treatment (Cisplatin with radiation and then a second chemo, Doxorubicin (also known as Adriamycin), and then in 1999 participated in a Phase 1 Clinical Trial with the drug Combretastatin.
“Options have always been important to us and in Clayton's cancer treatment experience. Having options gave us a measure of control. We felt we could become part of the solution. You will find, as you use this mailing list, that others have a wealth of knowledge, from treatment options, strategies for coping with side effects, to experiences and resources. It is a great place to ask questions, seek support and share your concerns as well as successes.
“Understand the diagnosis; defy the prognosis! Knowledge shared will help us beat this thing!
“Welcome and please do not hesitate to post any of your concerns or questions, if any one of us can help or provide perspective we will do it in a heartbeat!”
Hugs to you and yours!
Rose & Cheri: Listserv Moderators
Instructions for joining the Anaplastic Thyroid Cancer E-Mail Support Group:
From the ThyCa web site: http://www.thyca.org//sg/email/#anaplastic.
Subscribe at http://groups.yahoo.com/group/anaplastic/join.
Note--If you are not yet registered with Yahoo, you will need to do this before subscribing; click on "I'm a New Member--Sign Me Up" at the above web site.
Registration is a simple and quick process, as well as free; you will get a Yahoo password.
After you are registered, go back to http://groups.yahoo.com/group/anaplastic/join and subscribe to the list. You will receive a confirmation email that you MUST respond to, then you will be on the list to get and send email.
If for any reason you cannot complete the Yahoo registration process, you can automatically subscribe to the list by sending a BLANK email to Anaplasticemail@example.com. This avoids acceptance of cookies but gets you basic list membership only; you will not have access to Yahoo's handy web sites unless you register.