The following resources to help with emotional support are
from Advanced Breast Cancer: A Guide to Living
with Metastatic Disease, 2nd Edition by Musa Mayer, copyright 1998, published by
O'Reilly & Associates, Inc. To order, or get more information about
Musa's book, call 1-800-998-9938.
Permission is granted to print and distribute this list of resources for
noncommercial use as long as the above source is included. This information is
meant to educate and should not be used as an alternative for
professional medical care.
Finding a support group:
Sometimes it is relatively easy to find a support group in which you feel comfortable; sometimes it takes a bit of looking
around, and maybe trying out a few until you find one that is a good fit for you. Below are some suggestions to help you get
started, and two organizations which might also be helpful.
- Inquire at a local medical center or hospital. Check to see if there is a Breast Center, and if not, contact the Social Work or Psychiatry Department.
- Contact the American Cancer Society for a referral at (800) ACS-2345.
- Contact the National Alliance of Breast Cancer Organizations for a referral at (800)719-9154.
- Contact Y-ME for a referral at (800) 221-2141.
- If there is no support group for metastatic patients nearby, call one in a neighboring community and ask for a referral to organizations or leaders who may help.
- If your local breast cancer support organization doesn't have a group for metastatic breast cancer patients, ask that one be started. Get together with other metastatic patients and let your needs be known.
- Look into starting a group yourself. A group of patients can get together to hire an experienced group leader--a social worker, psychologist or psychiatrist--who has experience in working with cancer patients and good group skills. You should be able to find a name of a good therapist from one of the above sources.
American Self-Help Clearinghouse
Northwest Covenant Medical Center
Denville, NJ 07834-2995
(800) 367-6274 in NJ
TTY 625-9053 for hearing impaired
Referrals and suggestions for starting your own self-help group. Publishes the Self-Help Sourcebook, 1995.
To order, write to the above address, Attn: Sourcebook. This publication is also available
The Self-Help Sourcebook Online is a searchable database that includes information on
approximately 700+ national and demonstrational model self-help support groups, ideas
for starting groups, and opportunities to link with others to develop needed new national
or international groups.
The National Self-Help Clearinghouse
25 West 43rd Street, Room 620
New York, NY 10036
Hot line: (212) 354-8525
Provides information and referrals to self-help groups.
National Bone Marrow Transplant Link
29209 Northwestern Highway, #624
Southfield, MI 48034
Clearinghouse and links to former patients. Volunteers will return your call.
Breast Cancer On-line Support
Montague, NJ 07827
World Wide Web: http://pages.prodigy.net/replyasap/bc/
Breast cancer survivors tell their experiences so others can learn from them.
Visitors can also use the Survivor Forum Discussion room, regular
chat room, and view the latest breast cancer research information.
10921 Reed Hartman Highway, Suite 215
Cincinnati, OH 45242
Toll-free: (888) 793-WELL or (888) 793-9355
World Wide Web:
The Wellness Community is a support program devoted to providing free psychological and emotional support
to cancer patients and their families. The program is founded on the "Patient Active Concept," which combines the
skill of the physician with the will of the patient. There are communities in many cities nationwide.
The MedInfo website maintains the searchable archives of all the oncology mailing lists
on the Internet
and provides a convenient interface for subscribing, searching, browzing, and other
Address to post: firstname.lastname@example.org
A moderated mailing list for the discussion of bone marrow transplants.
To subscribe, leave subject blank; in body of message write only: subscribe BMT-TALK YourFirstName YourLastName.
Address to post: BREAST-CANCER@MORGAN.UCS.MUN.CA
The Breast Cancer Discussion List (most of the quotes in Holding Tight,
Letting Go came from people on this list).
To subscribe, leave subject blank; in body of message
write only: subscribe BREAST-CANCER YourFirstName YourLastName.
Address to post: CANCER-L@WVNVM.WVNET.EDU
The General Cancer Support Group. To subscribe, leave subject blank; in body of message
write only: subscribe CANCER-L YourFirstName YourLastName.
Subscription address: listserv.acor.org/archives (click on Club-Mets-BC)
Support group for those with metastatic breast cancer (part of Gilles Frydman's ACOR website). To subscribe, fill out the form at the subscription address above, which asks for your email address and name. You will be asked to select a password.
Address to post: FACING-AHEAD@maelstrom.stjohns.edu
Helping to face the death of a loved one and its aftermath. To subscribe, leave subject blank; in
body of message write only: subscribe FACING-AHEAD YourFirstName YourLastName.
Inflammatory Breast Cancer Support Mailing List. To subscribe, leave
subject blank; in body of message write only: subscribe. Also,
see the Inflammatory Breast Cancer help
page at: http://www.ibcsupport.org/
Address to post: LYMPHEDEMA@ACOR.ORG
The Lymphedema E-Support Group. To subscribe, leave subject blank; in body of message
write only: subscribe LYMPHEDEMA YourFirstName YourLastName.
Address to post: MALEBC@maelstrom.stjohns.edu
A Male Breast Cancer Discussion List. To subscribe, leave subject blank; in body of message write
only: subscribe MALEBC YourFirstName YourLastName
AOL Cancer Board
Go to The New Better & Medical Cancer Forum, then Glenna's Garden, and you arrive at dozens of Cancer Message Boards.
Compuserve Cancer Forum
At main menu: GO CANCER. Has Library, Message Boards, and a link to CancerNet.
Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by
Musa Mayer. Cambridge, MA: O'Reilly & Assoc., Inc., 1998. This is the book
from which most of the resources on this page, and much of the content in this
Patient Center has been taken. It is a book about life: the daily lives of
ordinary people confronting a deadly disease. Advanced Breast Cancer offers
the stories of 40 women and men as they live with metastatic breast cancer,
often for many years. Includes treatment decisions, managing side effects
and pain, finding support, family issues, and emotions. It can be ordered online at:
http://www.oreilly.com/catalog/holding2/, or by calling
O'Reilly Customer Service, 1-800-998-9938.
From Victim to Victor, by Harold H. Benjamin, Ph.D. and R. Trubo.
Los Angeles: Jeremy P. Tarcher, 1987. From the founder of the
Wellness Community, advice on finding and keeping support.
Helping Your Mate Face Breast Cancer, by Judy C. Kneece, R.N., O.C.N.
EduCare Publishing, 1995. A book for support partners designed to help
them understand how to provide a caring, healthful environment while taking
care of their own emotional needs during the crisis of breast cancer.
I Still Buy Green Bananas: Living with Hope, Living with Breast
Cancer, by Michelle Melin. A booklet based on interviews with Y-Me
volunteers with metastatic disease, it can be ordered from Y-Me
(800-221-2141), or found online at:
Living Beyond Limits, by David Spiegel, M.D. New York: Random House, 1993.
This excellent book on coping with metastatic illness is by the
Stanford University psychiatrist responsible for the groundbreaking
study suggesting that support groups for metastatic breast cancer
patients extend both quality and quantity of life. Very strong
chapters on psychosocial support and on the use of hypnosis and
relaxation for controlling pain and other symptoms, with an outstanding
bibliography. Chapter Six, "Detoxifying Dying," can be found
Sexuality and Cancer: For the Woman Who Has Cancer, and Her Partner.
40 pages. Free booklet gives information about cancer, sexuality and
other areas of concern to the patient and her partner. Includes a
resource list. American Cancer Society; (800) ACS-2345.
"The Shock of Recurrence," by Musa Mayer. In this article, excerpted from
Advanced Breast Cancer, Musa talks about the kinds of support and information
that people find helpful during this stressful time, and the variety of ways in which
they begin to adapt, cope and develop strategies for dealing with the reality of
Stories and poems from patients
reveal the possibilities for finding strength, flexibility, and resilience in
getting through this crisis. Online at:
Taking Time: Support For People With Cancer and the People Who
Care About Them. 68 pages, free from NCI.
This sensitively written booklet for persons with cancer and their families addresses
the feelings and concerns of others in similar situations and how they have coped.
NCI publication #92-2059, 1993; (800) 4-CANCER.
Also available online at:
The Wellness Community Guide To Fighting For Recovery From Cancer, by
Harold H. Benjamin, Ph.D. Putnam, 1995. In this book, the founder
of the Wellness Community, a nationwide cancer support organization
with branches in a number of cities, offers strategies cancer patients
can use to deal with the emotional and physical effects of cancer and
treatments, including visualization, nutrition, exercise, and enhanced
A Burst of Light, by Audre Lorde. Firebrand Books, 1988. The author's second
essay collection (see The Cancer Journals),
this one about Lorde's recurrence and subsequent treatment.
The Cancer Journals, by Audre Lorde. San Francisco: Aunt Lute Books, 1980.
Paperback. Reflections on her breast cancer experience by a well-known poet and feminist.
Cancer in Two Voices, by Sandra Butler and Barbara Rosenblum.
Spinsters Book Company, 1991. $12.95. (Also 16mm/video from Women Make Movies, New York.)
A moving journal of illness, written by Rosenblum and her partner.
Exploding Into Life, by Eugene Richards and Dorothy Lynch. Aperture, 1986.
A compelling and unsparing journal in photographs and words by a metastatic
breast cancer patient and her partner. Out of print, but available in libraries.
Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam
Wilber, by Ken Wilber. Boston: Shambala Publications, 1993. This book interweaves
the physical and spiritual journeys of a woman with metastatic breast cancer,
using her own journals and the words of her husband.
Life Lines and Life Wish, by Jill Ireland. Jove Publications, 1988.
The actress' two memoirs provide affecting portraits of celebrity in the shadow of cancer.
Of Tears and Triumphs: One Family's Courageous Fight Against Cancer, by Georgia
Photopulos and Bud Photopulos. Contemporary Books, 1991.
An account of how a political figure and his wife dealt with her metastatic breast cancer.
Out of print, but available in libraries.
Seeing the Crab: A Memoir of Dying, by Christina Middlebrook. Basic Books, 1996.
A vivid and honest account by a Jungian analyst of her experience with high-dose
chemotherapy and metastatic disease.
Becky and The Worry Cup: A Children's Book About a Parent's Cancer, by
Wendy Schlessel-Harpham. HarperPerennial Library, 1997.
How to Help Children Through a Parent's Serious Illness, by Kathleen McCue.
St. Martin's Press, 1994.
Moms Don't Get Sick, by Pat Brack, with Ben Brack. Pierre, SD: Melius
Publishing, 1990. (800) 882-5171.
My Mommy Has Cancer, by Carolyn Stearns-Parkinson. Solace Pub, 1991.
Sammy's Mommy Has Cancer, by Sherry Kohlenberg. Magination Press, 1993.
(800) 825-3089 or (212) 924-3344.
When a Parent Has Cancer: A Guide to Caring for Your Children, by
Wendy Schlessel-Harpham. HarperCollins Publishers, 1997.
Charlottes Web, by E. B. White. New York: Harper, 1952.
The classic tale of friendship and death as a part of life.
Helping Children Cope with Separation and Loss, by Claudia Jewett-Jarratt.
Revised edition. Cambridge, MA: Harvard Common Press, 1994. Written by a
child and family therapist, this book covers many kinds of loss, and describes
simple techniques that adults can use to help children through grief.
Lifetimes: The Beautiful Way to Explain Death to Children, by Bryan
Mellonie and Robert Ingpen. New York: Bantam Books, 1983.
Paintings and simple text explain that dying is as much a part of life as being born.
Straight Talk About Death for Teenagers: How to Cope with Losing Someone You Love,
by Earl Grollman. Boston: Beacon Press, 1993. Wonderful book that talks to teens,
not at them. Discusses denial, pain, anger, sadness, physical symptoms, and
depression, and offers techniques for working through feelings.
Talking About Death: A Dialogue Between Parent and Child, by Earl Grollman.
Boston: Beacon Press, 1990. An excellent book for helping children cope with
grief. In comforting language, it teaches parents how to explain death,
understand how children feel and know when to seek professional help.