Support for the Breast Cancer Patient and Survivor

Remember, we all stumble, every one of us. That’s why it’s a comfort to go hand in hand.

As a breast cancer patient or survivor, your needs (physical, emotional, spiritual) are different from those of your family, friends, co-workers and others who know and care about you. Although you may feel a need to make sure that everyone else is “okay,” your first priority should be taking care of yourself and finding the support you need to help get you through everything you are dealing with as a result of your breast cancer diagnosis. There are many ways you can find support, and you can choose whatever is best and most comfortable for you.

As you go through the process of coping with a diagnosis of breast cancer, you and your family will likely need different kinds of support from different people. The way that one person deals with learning and living with the knowledge that she has breast cancer is not identical to how another newly-diagnosed patient may handle it. Neither is the way in which family members, friends, caregivers and co-workers face the situation.

In coping with breast cancer, you should not let anyone tell you what you need or how you ought to feel or cope with this challenge. There is no “right” way to deal with a breast cancer diagnosis (or treatment and life beyond treatment). It is important to identify what you need, what you prefer, and what your limits are.

Where Can I Go to Find Support?
Family, friends, neighbors and co-workers. The emotional and practical support of your family and friends can be helpful and comforting. It can also be stressful. People who do not have cancer can sometimes say foolish or hurtful things or act in a way that does not feel helpful to you. You will feel better if you can let others know exactly what you need and how you prefer to be helped.

Support groups. You can find groups at hospitals, health clinics, the American Cancer Society and other support centers. Several scientific studies have shown positive benefits to breast cancer patients who participate in support groups. (See Support Groups in North Carolina to find a group in your area or check with your local hospital, cancer center or American Cancer Society office).

Buddy system. Also called “peer support,” this type of support connects newly-diagnosed patients with survivors to offer emotional support, guidance and camaraderie. Women Building Bridges, a peer support program created for women in North Carolina, is one such program. The American Cancer Society’s Reach to Recovery program is another. Hospitals and cancer centers may offer similar programs. Nationally, Y-ME National Breast Cancer Organization and other breast cancer and cancer organizations offer peer support programs (see Resources at the end of this section).

Individual counseling is another way for you to get the emotional support you need while coping with a diagnosis. Seeing a counselor does not mean that something is wrong with you. It is healthy for you to recognize when you need help. Check with your health insurance plan for benefits before you make an appointment with a counselor. If you do not have health insurance, you can check with the social worker or nurse at your local hospital, a clinic or women’s center to find out if they offer free or low-cost counseling services. Some counselors specialize in working with individuals who have cancer.

Talking to a religious advisor is another source of counseling. Some women find that a diagnosis of cancer brings out a spiritual crisis. It is common to ask, “Why me?” Your spiritual counselor can offer you support in sorting through some of the deep concerns that can arise about your religion or values.

Online support groups are sometimes called electronic mailing lists, listservs or discussion groups. They offer information, support and community to their participants, who usually correspond through e-mail. (Members send in their comments, which are sent to all other members of the group.) Some online support group web sites also have message boards, survivor stories and chat rooms. The Association of Cancer Online Resources (www.acor.org) is one such organization. BClist.org and BCmets.org are two other excellent listservs.

The above was adapted in part from the Breast Cancer Resource Guide of Massachusetts, 888.200.6894 or www.breasted.org.

RESOURCES

Organizations

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer, including breast cancer. Provides free booklets about support and coping with cancer. Survivors and caregivers can support each other through the
Cancer Survivors Network (877.333.HOPE (4673) or www.acscsn.org).

Breast Friends, Inc.
404.843.0677 (support line) or
888.718.3523 (National toll-free)
www.breastfriends.org
Offers a 24-hour, toll-free, national hotline for one-to-one support, comfort and information for breast cancer patients. Also provides peer support for husbands, family members and friends.

Buddy Kemp Caring House (Charlotte, NC)
704.384.5223
www2.novanthealth.org/buddykemp
Serves Mecklenburg and surrounding counties. Provides home-like environment for emotional support. All services free to anyone. Offers support groups for breast cancer, metastatic cancer, and support for family and friends.

CancerCare
800.813.HOPE (800.813.4673)
www.cancercare.org
Staffed by social work professionals who provide support services, education and information, referrals and financial assistance resource guides. Offers a toll-free hotline for counseling and telephone support groups. Available in Spanish.

Cancer Hope Network
877.HOPENET (877.467.3638)
www.cancerhopenetwork.org
Has a free, confidential service that matches cancer patients to trained volunteers who have undergone a similar cancer experience.

Cancer Services, Inc. (Winston-Salem, NC)
336.760.9983 or 800.228.7421 (in North Carolina)
www.cancerservicesonline.org
Serves Forsyth, Davie, Stokes and Yadkin Counties. Offers support groups and community education programs. All services free.

Cornucopia House Cancer Support Center (Chapel Hill, NC)
919.401.9333
www.cornucopiahouse.org
This support center is available to anyone from all areas of North Carolina. Offers free education, complementary therapy and support services (including support groups) to people with cancer, their families and friends.

Living Beyond Breast Cancer
888.753.LBBC (888.753.5222)
(Survivor’s Helpline, Tuesdays 11:00 am - 3:00 pm)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, helpline for survivors and family members.

Mothers Supporting Daughters with Breast Cancer
410.778.1982
www.mothersdaughters.org
Support network of mothers who have daughters with breast cancer. Helps mothers become better “care partners.”

National Cancer Institute’s Cancer Information Service
800.4.CANCER (800.422.6237)
www.cancer.gov
One of the best resources available for cancer patients, this government organization provides the toll-free Cancer Information Service in English and Spanish. Has free support booklets about supporting cancer patients.

SHARE: Self Help for Women with Breast or Ovarian Cancer
212.719.0364 or 866.891.2392 (hotline)
www.sharecancersupport.org
Survivor-led organization with mission to ensure that no one faces breast or ovarian cancer alone. Offers a hotline where breast cancer survivors provide emotional support, information and resources about breast cancer. Most services available in Spanish.

Sisters Network, Inc.
713.781.0255or 866.781.1808
www.sistersnetworkinc.org
A national organization for African American breast cancer survivors. Focuses on education, prevention, emotional support and awareness of breast cancer for African Americans. Offers support groups.
Three chapters in NC:

• Piedmont Chapter (Tracy Cook-Brewton, Gastonia, NC, 704.865.2227 or sisnetnc@bellsouth.net)
• Triangle Chapter (Valarie Worthy, Durham, NC, 919.419.8284 or sisterstriangle@aol.com)
• Southeastern NC Chapter (Irene Short, Lumberton, NC, 910.738.3175 or sistersnetsen@aol.com)

SupportWorks Self-Help Clearinghouse (Charlotte, NC)
704.331.9500
www.supportworks.org
Serves Mecklenburg and surrounding counties. Offers listings of support groups, how to start a support group, Internet chat support groups. Has Cancer Resource Guide for Mecklenburg and Surrounding Counties.

Susan G. Komen Breast Cancer Foundation
800.I’M AWARE (800.462.9273)
www.komen.org
Foundation for breast cancer research, education, screening and treatment. Offers toll-free hotline with trained volunteers to provide breast cancer, resource and peer support information. Available in Spanish.

Vital Options International TeleSupport Cancer Network
818.788.5225 or 800.GRP.ROOM (800.477.7666)
www.vitaloptions.org
Weekly call-in cancer radio show called “The Group Room” links callers with other patients, healthcare providers, long-term survivors, and family members of patients with cancer.

The Wellness Community
888.793.9355
www.thewellness-community.org
Offers a free program of emotional support, education and hope for people with cancer and their loved ones. Has several centers throughout the United States.

Y-ME National Breast Cancer Organization
800.221.2141 (English) or 800.986.9505 (Spanish)
www.y-me.org
Offers education, support and toll-free hotline where callers are matched with survivor, patient or supporter with similar breast cancer experience. Other services are ShareRing Network (monthly teleconference on breast cancer subjects), and Men’s Match (for men supporting a wife, mother, daughter or friend through breast cancer).

Books and More

“Between Us: A First-Aid Kit for Your Heart and Soul”, (video, 1998). Moving documentary about twelve long-term breast cancer survivors. Explores the changes and challenges of those with cancer and their friends and loved ones. Contact www.betweenus.org.

Hope is Contagious: The Breast Cancer Treatment Survival Handbook, by Margit Esser Porter (1997). Diagnosed with breast cancer at age 34, Porter includes advice and practical tips from different women on how to cope with breast cancer treatments.

Just Get Me Through This! The Practical Guide to Breast Cancer, by Deborah A. Cohen with Robert M. Gelfand, MD (2003). A breast cancer survivor and oncologist write a supportive book that offers many practical tips and also a section for family and friends.

Living Beyond Breast Cancer: A Survivor’s Guide for When Treatment Ends and the Rest of Your Life Begins, by Marisa C. Weiss, MD, and Ellen Weiss (1998). Focuses on physical, social, legal, financial and emotional issues women face with a breast cancer diagnosis. Contact Living Beyond Breast Cancer at 888.753.5222 or www.lbbc.org.

Not Now . . . I’m Having a No Hair Day: Humor and Healing for People With Cancer, by Christine Clifford, illustrated by Jack Lindstrom (1996). Using her experience with breast cancer, the author writes a humorous book about the power of laughter and positive thinking. Contact 800.586.9062 or online at www.cancerclub.com.

Spinning Straw into Gold: Your Emotional Recovery from Breast Cancer, by Ronnie Kaye, MFCC (1991). Written by a psychotherapist and breast cancer survivor, the book shows how to turn a difficult time into an opportunity for growth with examples from breast cancer support groups.

Uplift: Secrets from the Sisterhood of Breast Cancer Survivors, by Barbara Delinsky (2003). The author, a breast cancer survivor who also lost her mother to the disease, compiled a collection of voices and practical tips on coping from 300 breast cancer survivors.

The Victoria’s Secret Catalog Never Stops Coming and Other Lessons I Learned from Breast Cancer, by Jennie Nash (2002). The author, diagnosed with breast cancer at age 35, writes about the life lessons she learned from her experience with breast cancer.

Woman Stories (8 videos) Stages of breast cancer care and survival. Inspirational and informative stories from breast cancer survivors. Call 800.775.5790 or see www.womanstories.org.

Web Sites

Association of Cancer Online Resources (ACOR)
www.acor.org
Hosts public online support groups. Click on “Mailing Lists.” Groups include:

• BRCA (breast cancer patients)
• BC-SUPPORTERS or CAREGIVERS (partners/caregivers of breast cancer patients)
• CLUB-METS-BC (metastatic breast cancer)
• CANCER-PARENTS (parent/children issues)
• FACING-AHEAD (facing the death of a loved one)
• LT-SURVIVORS (long-term survivors)

BCList.org
www.bclist.org
An online community for information and support. The list is unmoderated and open to discussion of any issue related to breast cancer.

BCMets.org
www.bcmets.org
An online resource for metastatic breast cancer information and support. Covers wide range of topics.

CancerGuide
www.cancerguide.org
A non-profit site created by cancer survivor Steve Dunn. Includes personal stories of cancer survivors.

Friends in Touch
www.friendsintouch.net
Site offers one-on-one support, message boards, a chat room, book list and resources, recipes, poetry and members’ stories.

Gillette Women’s Cancer Connection
Support Network
www.gillettecancerconnect.org
Personal accounts of women’s experiences with cancer. Resources, advice, guidance for family members.

HER2Support.org
www.her2support.org
Online information and support relating to HER2 gene, plus message boards and resource links.

Living With It
www.livingwithit.org
Support program for women with recurrent breast cancer, sponsored by Aventis Pharmaceuticals. Free articles, brochures, diet and exercise tips, medical options, survivor stories.

Oncolink’s Support Listings
www.oncolink.org/coping
Information, resources, e-mail discussion lists, book reviews on support and breast cancer.

Shared Experience
www.sharedexperience.org
Learn about others’ experiences with cancer and share your own story.