This web site has been established for the purpose of giving a web presence to the Breast Cancer ListServ (more informally known as the Breast Cancer List), for making it easy to join, leave, or change the way mail is received, and to share information about the List. By reading further, you will learn more about this virtual community.

The Breast Cancer List: A Virtual Community

What is the Breast Cancer List?
Who joins the Breast Cancer List?
What do List members write about?
What do the List members themselves have to say?

What is the Breast Cancer List?

Since 1994, the Breast Cancer List has been available on the Internet for women and men who have breast cancer, their families and friends, medical and other caregivers, researchers, students and other concerned people. Subscription to this discussion list is free.

The List was originated and is maintained by list owner, Jon Church, via Memorial University of Newfoundland, St. John's, Canada. To join, you can use the automated "Join the List" page at this site, or you can send an e-mail message to Listserv (the program that makes it all happen), using instructions found on the page called "e-mailing Listserv". After receiving a confirmation message, the subscriber will receive all messages posted to the list. You, in turn, can send your questions and responses to the List through this same address. This simple and effective process creates an open and dynamic forum for the discussion of any issue relating to breast cancer.

Who joins the Breast Cancer List?

Membership on the List is divided among those people who are newly diagnosed and undergoing--or about to undergo--primary breast cancer treatment, longer-term survivors who show no evidence of disease, and those who are dealing with all stages of metastatic disease. Husbands and partners of breast cancer patients represent important voices on the List, as do other family members of breast cancer patients, particularly their children and siblings. And, while breast cancer itself is a common disease, breast cancer in men is not. Through this list a number of men with the disease have been able to meet and share common experiences.

Many members simply read the messages, either as they are posted or in a daily digest form or via Pete Bevin's archives. These quieter List members may send messages back to the list only rarely, as interest and personal needs dictate. And some members lurk and never post. At any given time, other members will be involved in active discussions (called "threads" for the subject line which identifies the responses) and frequently there will be more than one active thread. No matter how busy the list is, however, the feeling on the list is that of an intimate support group.

Unlike face-to-face breast cancer support groups, which may have limitations in number of meetings, scheduling and mobility, the Breast Cancer List is available twenty-four hours a day. In their own time and their own homes, people in crisis can ask questions, share, or raise issues, knowing that within a few hours--and often within minutes--others will respond in a caring and informative way. For people in remote or underserved areas, and for those who may be confined to their homes because of advancing disease or debilitating treatment, the Breast Cancer List forms a lifeline to the world, helping allay the isolation serious illness often brings. For family and friends of breast cancer patients, who often have no other opportunity to voice their concerns or to gain understanding, the List provides a sounding board as well as a window into the experience of breast cancer.

What do List members write about?

While any individual message may contain a variety of topics, the substance of posts to the List can generally be broken down into four categories:

1. Treatment and disease information: The emphasis here is on medical issues, including various forms of treatment, staging and prognosis, the meaning of diagnostic information, research protocols and studies. The efficacy and side effects of chemotherapy, radiation and surgery are a frequent topic. Alternative treatments are often discussed. Patient advocates on the List who follow current research keep the List community updated with the latest in current and potential treatments.

2. Practical information: This includes, in part, local and national events, insurance problems and provider issues, advocacy efforts, media involvement with breast cancer, books and literature on breast cancer as well as other arts, where to find other sources of information, referrals, etc. On-line resources are often mentioned and up-dated on the List.

3. Personal Experiences: Because there are many participants, there are almost always several people on the List who have had a similar procedure, side effect or diagnosis, and who can provide perspective and reassurance. Being able to search for information in the List archives makes past discussions on any topic available to new members, or to long-time members with new concerns.

4. Emotional Support: Members reach out to one another with love, prayer, hope, humor, inspiration and a willingness to listen. Many of those on the List are dealing with profound issues of loss and powerlessness. For some, it is the first time they have faced their mortality. Others speak of the loss of a breast, radiation burns, chemo-induced menopause or chemo-brain--the effects of chemotherapy or hormonal treatments. They worry about their children, or their parents, or friends. Some are aware they will not have long to live. Still others grieve for family members or friends lost to the disease, or express concern about their daughters inheriting the breast cancer gene. Good news is enthusiastically shared and received by all. Bad news is greeted with compassion and gentle encouragement. Humor in all its forms often serves as a relief from the "heaviness."

The List is open at many levels for many needs: some people ask a few questions, then sign off. Others leave and then return whenever they need to. Still others join for their own needs, and stay on for months, or even years, helping others as they themselves continue to deal with the ongoing fears common to most breast cancer patients.

At times, newly diagnosed women report being disturbed as they read about the treatments and fears of patients with metastatic disease, or the declining health or death of a member. But they also feel encouraged by hearing from the women and men with metastatic disease who are living, and living well, with their illness, often for many years.

Despite the discomfort, or perhaps because of it, there is a feeling of hope and connection that moves participants deeply. They are inspired by the courage and the honesty they see displayed. Close friendships are formed on the List, and people stay in frequent contact and exchange private e-mail with others they've met here. Over the years, the Breast Cancer List has become a vital and evolving community, with a rich history. There are annual gatherings, and many regional and local get-togethers throughout each year. Everyone who is part of the List is welcome at these get-togethers.

What do the List members themselves have to say?

Here are a few unsolicited quotes from postings from a single month that describe how people have come to feel about the List:

"I learned something important today -- it is not a weak act (or one you should suppress) to ask for help. In fact, reaching out to a community that hurts and laughs and cries together made me stronger and gave me what I needed today. I, too, feel honored and privileged to be part of this group. You have all given me things which I never anticipated but am so grateful for."

"...the incredible strength, courage, tenderness, sweetness, caring, and warmth of these women and their supporters is so overwhelming and empowering that I wouldn't want to miss it. And, given that people are incredibly patient and kind to each of us as we post our first terrified, ill-informed message, there is clearly plenty of room for newbies."

"I have gained much support, both directly when I did ask questions, and indirectly from lurking (reading others' messages)."

"I have never introduced myself to the list, but I value it greatly. It continues to be my support group as I work through eight months of chemo and radiation."

"This list provides the comfort, the hope, the strength to continue to believe. This list provides a sense of dignity and self esteem to what can be a very undignified and confidence destroying situation. You are all very real and special to me and I thank each of you from the bottom of my heart for all that you give at a time when your own needs are so great."

"I can tell you that this group has been the best thing that ever happened to me. Trust me, you can say anything to these wonderful women, they give you their heart, their sad, wonderful, angry, and funny stories. We all have something in common here and we all come to this list with a different set and size of baggage, however when we are dealing with this monster we suddenly are one."

 "I used to think I was an island. Since I have joined and read this List I have found out I am part of the world."

Much of this description of the Breast Cancer List was written by Musa Mayer, who was diagnosed with Stage II breast cancer in 1989. She has been a patient advocate since then, with a focus on helping women with metastatic breast cancer. She is a Contributing Editor at MAMM Magazine and the author of "Examining Myself: One Woman's Story of Breast Cancer Treatment and Recovery" (Faber & Faber, 1994), "Advanced Breast Cancer: A Guide to Living with Metastatic Disease" (O'Reilly, 1998) and "After Breast Cancer: Answers to the Questions You're Afraid to Ask" (O'Reilly, 2003).

You can reach Musa through AdvancedBC.org