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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:

Support groups: Video: Reading:

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
(201) 625-7101
(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 online at: http://www.cmhc.com/selfhelp/. 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
e-mail: gar@cunyvmsl.gc.cuny.edu
Provides information and referrals to self-help groups.

National Bone Marrow Transplant Link
29209 Northwestern Highway, #624
Southfield, MI 48034
(800) LINK-BMT
Clearinghouse and links to former patients. Volunteers will return your call.


Support groups

Breast Cancer On-line Support
Survive
P.O. 1521
Montague, NJ 07827
Email: bcsurvivors@usa.net
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.

Wellness Community
10921 Reed Hartman Highway, Suite 215
Cincinnati, OH 45242
Toll-free: (888) 793-WELL or (888) 793-9355
World Wide Web: http://www.brugold.com/wellness.html
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.

• • • • • •

Medinfo.Org
http://www.medinfo.org/listserv.html
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 functions.

BMT-TALK
Subscription address: bmt-talk-request@ai.mit.edu
Address to post: bmt-talk@ai.mit.edu
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.

BREAST-CANCER
Subscription address: LISTSERV@MORGAN.UCS.MUN.CA
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.

CANCER-L
Subscription address: LISTSERV@WVNVM.WVNET.EDU
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.

CLUB-METS-BC
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.

FACING-AHEAD
Subscription address: listserv@maelstrom.stjohns.edu
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.

IBC Support
Subscription address: ibc-request@ibcsupport.org
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/

LYMPHEDEMA
Subscription address: LISTSERV@ACOR.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.

MALEBC
Subscription address: listserv@maelstrom.stjohns.edu
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.


Reading

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: http://www.y-me.org/hope.html.

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 online at: http://www-med.stanford.edu/school/Psychiatry/PSTreatLab/

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 metastatic disease. Stories and poems from patients reveal the possibilities for finding strength, flexibility, and resilience in getting through this crisis. Online at: http://www.patientcenters.com/breastcancer/

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: http://wwwicic.nci.nih.gov/taking_time/timeintro.html

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 personal relationships.

• • • • • •

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.


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