Since the spring of 1994, a new resource has been available on the Internet for women and men who have breast cancer, their families and friends, medical and other caregivers, and researchers. The Breast Cancer List takes the form of e-mail postings routed through a central distributing address (called the ListServ) to each subscriber's e-mailbox..

This simple and effective idea creates an open and dynamic forum for the discussion of any issue relating to breast cancer.

At the current time, there are approximately 600 subscribers, about 500 from the United States, with the remainder from Canada and a dozen or more other countries around the world. Most of these members are lurkers, meaning that they simply read the messages, available either as they are posted or in a daily digest form, and send messages back to the list only rarely, as interest and personal needs dictate. Despite these large numbers, because only a minority of members at any given time are involved in active discussions (called "threads" for the subject line which identifies the responses), the feeling on the list that of an intimate support group.

Unlike traditional breast cancer support groups, which 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 feelings, 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 can provide both a sounding board and a window into the experience of breast cancer.

Membership on the List is divided between those people who are newly diagnosed and undergoing--or about to undergo--primary breast cancer treatment, longer term survivors who show no evidence of recurrence, and those who are dealing with all stages of metastatic disease. Husbands of breast cancer patients, couples, and men with breast cancer represent important voices on the List, as do the several oncologists, surgeons, researchers, nurses and other health care professionals who have generously shared their expertise. Other family members of breast cancer patients, particularly their children and siblings, are frequent participants as well.

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.

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 is such a large pool of 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.

4) 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, or chemo-induced menopause, or the effects of chemotherapy. They worry about their children, or their parents, or friends. Some are aware they will not have long to live Despite the pain, 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 often formed on the List, and people stay in frequent contact and exchange private e-mail with others they've met on the list.

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

"You just dialed into HUG-N (Hugs You Get - Network). We do cyber hugs, kisses, hand holding, love, and best of all listening. We have special prices by the minute, hour, day, or month. All prices have been recently reduced to free."

"It's so great to have hundreds of friends standing right beside you every step we take. I know they have lifted me up in their arms over the past few months. "

"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."

"What a wonderful support it is to know that you are out there and that you truly do care. I can't get over the amazing amount of help, moral & emotional support, sound advice, and caring friendship that I have gotten from this list. So many of you have touched my heart deeply. Not just with how you have helped ME, but in sharing your lives and opening your hearts about yourselves."

"The list has been therapeutic for me. As time goes on, I am really not asked about my BC and no one talks about it. However, I still deal with it everyday and reading the postings gives me the support I still need at times."

"There is a bias towards progressive disease, and that's pretty scary. However, 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 never introduced myself to the list, but I value it greatly. It continues to be my support group as I work through 8 months of chemo and radiation."

"I have only been connected to this group for a month and it seems like a lifetime...I honestly feel like I already know many of you personally. I also feel like I have been accepted with open arms, hearts and minds. It has done me a world of good and my family can attest to that."

"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."

"It is heart warming to know there is a bc family. It makes cyberspace so much warmer."

"Amazing how much love there actually is in this tired, mean old world. How sad it takes something like this to unleash it."

The archives of the Breast Cancer List are preserved in a searchable database at the website for the Association of Online Cancer Resources (ACOR) at

As one member of the Breast Cancer List wrote recently: "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."

To Join:

Send e-mail to: ListServ@morgan.ucs.mun.ca
Leave the subject line blank and turn off any signature file
In the body of the message, write: SUBSCRIBE BREAST-CANCER your first name, your last name