Marc's Esophageal Cancer Story

diagnosis | surgery | chemo & rad | afterward | resources

internet resources
   –or–
listserv, the web and my bed?

acor listserv

I'm one of the list owners for the Esophageal Cancer Group (EC-Group) on the Association of Cancer Online Resources (ACOR) list server. On February 14, Valentines day, in 1996 the EC-Group was launched and at last count has almost 1,500 subscribers. It is a free forum for patients and caregivers to exchange information through e-mail about esophageal cancer. It is the largest support group for EC on the internet.

ACOR has an extensive collection of support groups for a variety of cancers, including a support group for cancer care givers – family and friends who provide the daily care of those of us stricken with one form or another of cancer. Tammy and I are the also the list owners of Caregivers and we recommend it to anyone helping a cancer patient! We thank ACOR for providing a free home for the EC-Group and Caregivers.

To subscribe to the EC-Group, send mail to LISTSERV@LISTSERV.ACOR.ORG with the message containing only SUBSCRIBE EC-GROUP firstname lastname. To also subscribe to Caregivers, add this line: SUBSCRIBE CAREGIVERS firstname lastname.

There is an easier way, however, here at the EC Café web page for the EC-Group.

ec internet stuff

THE resource site for Esophageal Cancer is Cathy's EC Café, designed by Cathy Weeks. I have always thought of the Café as the EC "beacon" on the web. It has complemented the EC-Group list so completely that many members think of them as one entity. Tammy and I are extremely proud to carry on Cathy's excellent work.

The Esophageal Cancer Awareness Association, Inc. was formed in July 2002. The purpose of the ECAA is to carry the support role of the EC-Group to those that can't connect to the Internet. ECAA is unaffiliated with ACOR or the EC-Group.

OncoLink, at the University of Pennsylvania is another great resource for a variety of cancers and cancer treatments. They also have a page with specific EC references.

One particularly interesting study (no longer available on OncoLink (5)) compared various EC treatment modalities: Chemosensitized Radiation for Cancer of the Esophagus, compiled by Dr. Richard Whitington, is recommended reading. However I also add this disclaimer about his study: The comparison of various treatment protocols lacks statistical uniformity. Look at it, study it, but "squint a bit" at the numbers. Dr. Whittington presents good information when taken as TRENDS in treatment effectiveness.

Regardless of studies, each patient will be either zero or 100% cured...
You have to believe that you will be in that 100% group of one!

my bed?

Construction details for my now infamous inclined bed frame - You must have a web browser that can view graphic images, like Netscape or Internet Explorer, and be handy with a saw, drill and screwdriver.

diagnosis | surgery | chemo & rad | afterward | resources

Photo - Marc with his son-in-law, Brian, at Songbird Hills Golf Club, April 2000.

5 - I have quoted the "Whittington Study" as a touchstone since I first read it in 1996. I can oly surmise that the concerns I have about statistical insignificance of the comparison of different oncology studies and trials was the reason that it was removed from the OncoLink site.

Since that study was published, chemosensitized radiation, combined with surgery has become the common treatment method for EC.

I was sent a copy of the original study web page several years ago, from someone who agreed that the overall value of this information was important for those weighing treatment options. I contacted OncoLink with a request to make the copy available on the EC Café, having received no response, I have made the page quietly available here.