It was a Thursday, less than 24 hours after my outpatient biopsy. I was seated on the edge of the examining table, facing my surgeon. He excused himself to make a phone call, and I glanced around the small examining room but saw nothing interesting to read. Looking down at my chest, I wondered how much of my breast remained under that bandage....
Time stretched out until anxiety began to nibble at the edges of my thoughts. Finally, footsteps stopped outside my door. My surgeon entered, carrying my file. "Nancy," he began solemnly. "I saw your pathology report at the hospital this morning." The speech that followed included the word cancer, some reassurances, and some statistics. I felt myself falling into a cold, dark whirlpool of numb disbelief.
"Come back tomorrow," he said. "Bring your husband. We'll discuss your options. You have time. You don't have to make an immediate decision."
My son drove me home from the hospital. My husband left work in shock and met us there. My daughter drove from San Francisco to Santa Barbara, and together we shared a tear-stained family weekend. With their support and honesty, I gathered the strength to move past the initial shock and face some tough decisions about my treatment.
My first step into the outside world was an email message to my cousin in Ohio. "Remember the 2 percent chance that lump would have cancer in it?" I wrote. "Well, Wednesday was not my lucky day."
My cousin responded immediately. We had been separated by physical distance for 25 years, and had been reunited only recently when we discovered that we were both online. Now, here she was, at my side, via the Internet.
During the months that followed, I found myself in front of the monitor more and more, turning to the Internet for information, advice, and support. Particularly after my second biospy came back in disagreement with the first (confirming my suspicion that medicine is not an exact science), I realized that the responsibility for my choice of treatment was mine, not my doctor's. So I set out to to learn as much as I could about my options.
Information would provide perspective - and I was sorely in need of perspective. Somewhere out there research was being conducted that could help me make the decisions I was facing. But finding those repositories took some research in itself. My local resources seemed scanty; even the medical library was limited to dated textbooks and archived magazines. On the Net however, I found tremendous electronic libraries of recent articles, policy updates, treatment recommendations and personal stories. Within three months, I was able to gather the information I needed.
The quickest way to develop an overview of the medical information available on the Net is to start with a general pointer page. The pages most helpful to me were the Inter-Links Health Resource List, the Info Bank Health-biology-environment page, the World Wide Web Virtual Library: Biosciences - Medicine list, the Planet Earth Health and Medical page, and the Yahoo Health guide. These lists are updated frequently. I use them primarily as resource checklists and as pointers to newly added sites.
For general medical information, the sites I found most helpful were the Health Explorer, the New York Department of Health's Fact Sheets on Communicable Diseases, and Healthline. The Virtual Hospital and HealthNet, which are being built to interactively answer questions from remote patients and health care professionals, also show a lot of promise.
For cancer-related information, there are three major sites - CancerNet, OncoLink, and the Breast Cancer Information Clearinghouse. CancerNet, the gopher site of the National Cancer Institute, provides a searchable database of scientific abstracts, and fact sheets on risk factors, detection, therapy and unconventional treatments. OncoLink, maintained by the University of Pennsylvania, offers one of the most comprehensive collections of cancer resources, including factsheets and scientific abstracts on detection, treatment, and psychological aspects of the disease. The Breast Cancer Information Clearinghouse, run by the New York State Education and Research Network, points to a variety of resources, including background on relevant legislation, as well as lists of related mailing lists, gopher sites, and 800 numbers.
As your research becomes more focused, you'll want a more streamlined method of locating articles or abstracts on specific issues. Yale's Resources by Medical Specialty takes you directly to articles in the listed catagories. The Veronica search tool performs an even more specific search, cutting through all the menu layers on gopher sites to find article titles containing a requested search key, such as "prostate" or "breast cancer." Reports on current government-sponsored medical research projects can be found in the CRISP database and HSTAT, both maintained by the National Institute of Health. The approval status of various drugs can be monitored by logging into the Federal Food and Drug BBS (login: bbs).
The mixed blessing of the Internet is its dynamism: Information is constantly being added, updated, altered. The good news is research stays current; the bad news is guides go quickly out-of-date, and links that prove helpful once may not work a few weeks later. For updates on what's available at each site, refer to Lee Hancock's Health Resources List or G. Malet and L. Hancock's Medical List; for alternative resources, try J. Makulowich's Internet Resources on Alternative Medicine. These guides are updated periodically and stay reasonably accurate.
Although information sites are invaluable, my primary electronic lifeline has come from Internet newsgroups and mailing lists. This is where I ask the nitty-gritty questions and receive honest, experienced answers. The responses aren't textbook solutions or prosthetic-brochure promises; they offer a view from within, seasoned with compassion.
A focused discussion group acts as an information filter as well as a resilient support network. Find a team of people from all over the world who are facing or have faced the same crisis, and they will not only offer each other intense warmth, and understanding, but also share hard-won knowledge and provide directions to valuable information sites.
I found the Breast Cancer Listserv by a circuitous route; the most direct path, I've found, is to do a newsgroup and mailing list search for a particular topic. If the subject you choose doesn't come up, the alternative is to scan through a list of lists.
On the Breast Cancer Listserv, people from all over the world share insights, fear, and humor with a depth of expression that rarely surfaces in face-to-face contact. Without the time pressure of a "real" conversation, we are free to compose more careful responses. Geographical isolation and a measure of anonymity allow us to express intense emotions in a safe environment. Recent discussions have included how to explain chemotherapy hair loss to your child, what to expect during recuperation from a masectomy, how it feels to have a fireman spit on you because he thinks you're a skinhead, and how to repair a $200 prosthetic that the cat discovered.
The terror of being diagnosed with a potentially terminal disease lies in the feeling of isolation, the sense that the path in front of you has disappeared. On these discussion lists, women and men who "have been there" - or "are there" - offer hope, understanding, and friendship to those who have just arrived. They shed light on the fears that lurk in the shadows of the unknown and reflect back a pathway lit, not blocked, by one's sense of mortality.
It has been seven months since my surgery, the treatment I chose after weighing three unpleasant options. How would each of the three choices affect my health outlook for the future? How would they affect my physical and psychological well-being? What treatments were lurking on the horizon that might be available in the near future? These were the questions I considered as I gathered local and Internet resources. I felt that an informed choice would make it easier to live with the possible consequences. It has.
I was lucky. No invasive cancer was found, and my lymph nodes were clear. The physical trauma has passed. I chose prosthetics over reconstruction. I feel comfortable with my choices and saddened only fleetingly by the hand I was dealt.
The resources I need to deal with my ongoing physical and psychological well-being are literally at my fingertips. Thanks to the cyberspace community, I remain strong, healthy, and well-informed.
Copyright © 1995 Wired Ventures Ltd. All rights reserved. Last Modified: Wednesday, 11 January 1995, 23:43 PST
Here is a linked list of the sites mentioned in this article.
Nancy Oster's Web Page