ABLEnews Extra

                   Net Result Aids Cancer Patients

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Not many men are seen at the Palo Alto office of the Community Breast
Health Project, which has more than 700 women members.
   
Ron Roberts, 48, of Palo Alto came because he is statistically the one
man in 100,000 who has breast cancer.
   
Last fall, when Roberts walked into the office in a building near the
Stanford University Medical Center, the project was just setting up a
new computer link with the Internet.
   
Roberts, who is manager of Stanford University's own computer network,
was shown how he could use the project's computer access to learn
about his condition. As a result, he not only discovered a lot about
his cancer and treatment, but he was put in touch with other men
around the country who have the same illness.
   
"There are so few men with breast cancer that we couldn't find any
other local patients for him to meet, but we did find a few other men
with breast cancer in other parts of the country who wanted to talk to
him," said Lauren Langford, a computer expert and breast cancer
survivor who helped connect the health project with the Internet.
   
Roberts, who is undergoing chemotherapy, now uses his home computer to
access the latest data about cancer on the Internet.
   
"I felt really fortunate to have had such an incredible resource
available to assist me through this experience," Roberts said.
   
The project's computer access ties the health project, a nonprofit
organization, to cancer information sources--personal and
professional--all over the world. It is believed to be the only
organization of its kind on the Internet, according to Joan Schreiner,
a breast cancer survivor who headed the team that forged the Internet
link.
   
The project offers free access to cancer data to anyone who wants it.
A project member will help find information, produce printouts and
explain how to write messages to other cancer patients.
   
The system provides about 20 databases relating to cancer, including
Oncolink, a comprehensive oncology resource, and Medline, a database
from the National Cancer Institute. In addition, the computer hookup
at the project allows cancer patients to "talk" to others anywhere
an Internet connection exists, through computer bulletin boards and
e-mail messages.
   
The project's computer link provided a major boost for another breast
cancer patient in January. A woman who was taking Tamoxifen, the
much-touted drug that fights cancer and blocks estrogen production,
found that she was suffering vision and memory problems. Her
oncologist could not find the source, but she suspected Tamoxifen.
   
The woman used the project's computer to call up international studies
and reports on Tamoxifen and talked with other women in the country
taking the drug who reported a wide range of reactions, including some
similar to hers. She took that information to her oncologist, who told
her to stop taking the drug. The vision and memory problems
disappeared.
   
"Showing the doctor the results of research and patient reports turned
him around, and it made the patient more comfortable about her own
reactions," said Linda Romley-Irvine, director of the health project.
"Ever since we connected to the Internet and gained access to so many
cancer databases, we have been seeing this kind of help for patients."
   
The computer equipment was financed by several individuals, with
machines donated by some Silicon Valley companies.
   
ABLEnews Editor's Note: To use the project's computer, call the
                        Community Breast Health Project office at
                        (415) 725- 1788 between 9 AM and 1 PM weekdays
                        to make a day or evening appointment.

[Breast Cancer Project Computes, Mary Madison, San Francisco
Chronicle, February 21, 1995]

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