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Survivor Resources

Where to Find Help

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Being a cancer survivor can affect your job, your health insurance, your finances, and other practical matters. Often, your doctor, nurse, or social worker can be a good source for answers to your questions. There may be resources in your community that can help you get the services you need. This section lists groups and organizations to help you learn more about these issues and solve problems you may have.

General cancer resources

The organizations listed below are a good starting point to answer your questions about cancer. If you want to find a group that deals with a certain kind of cancer, most of these organizations will be able to help you.

National Cancer Institute

Cancer Information Service (CIS)
Tel: (800) 4-CANCER 9:00 a.m. to 4:30 p.m. local time, Monday through Friday TTY: (800) 332-8615 Online assistance: cancer.gov/cis

The Cancer Information Service (CIS) is the National Cancer Institute's link to the public, interpreting and explaining research findings in a clear and understandable manner. The CIS provides:

  • Free written materials on many different cancer topics.
  • Referrals to clinical trials and cancer-related services such as treatment centers, mammography facilities, or other cancer organizations.
  • Assistance in quitting smoking from information specialists trained in smoking cessation counseling.

Office of Cancer Survivorship

dccps.nci.nih.gov/ocs/default.html

NCI's Office of Cancer Survivorship provides information on new and innovative research in cancer survivorship and more.

American Cancer Society

National Cancer Information Center
Tel: (800) ACS-2345www.cancer.org/

Call 24 hours a day, 7 days a week. Staff can accept calls in either English or Spanish and can distribute publications in English and Spanish.

The ACS is a volunteer health organization that offers a variety of prevention and early detection programs, as well as cancer information and support to patients, their families, and caregivers. The ACS also supports research, provides printed materials, and conducts educational programs.

Cancer Survivors Network

Tel: (877) 333-HOPE
www.acscsn.org/

This is both a telephone and Web-based service for cancer survivors, their families, caregivers, and friends. The telephone component provides survivors and families access to prerecorded discussions. The Web-based component offers live online chat sessions, virtual support groups, prerecorded talk shows, and personal stories.

Cancer Care, Inc., National Office

Tel: (800) 813-HOPE
www.cancercare.org/

Cancer Care is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency's Web site.

National Coalition for Cancer Survivorship (NCCS)

Tel: (877) NCCS-YES
www.canceradvocacy.org/ e-mail: info@canceradvocacy.org

NCCS is a network of groups and individuals that offer support to cancer survivors and their loved ones. It provides information and resources on cancer support, advocacy, and quality-of-life issues. A section of the NCCS Web site and a limited selection of publications are available in Spanish.

Employment and legal rights

Could I now be passed over for a promotion? Can my office make special accommodations to make it easier for me to do my job now? These are some of the questions cancer survivors may have when they return to work after treatment. The resource list below offers some general information and specific resources to consult for answers.

NOTE: Legal rights change frequently. Check all the material you read to be sure you are getting accurate and up-to-date information from a reliable source.

Disability and discrimination

Equal Employment Opportunity Commission (EEOC)

Tel: (800) 669-6820
www.eeoc.gov/

Department of Justice (USDOJ)

Tel: (800) 514-0301
www.usdoj.gov/

The DOJ provides information to assist persons with disabilities with legal issues, questions about the ADA, mediation services, and other employment issues.

U.S. Department of Labor (DOL)

Office of Disability Employment Policy (ODEP)
Tel: (202) 376-6200 TTY: (202) 376-6205
www.dol.gov/odep/welcome.html

This agency provides fact sheets on a wide variety of disability issues, including discrimination, workplace accommodation, and legal rights.

Job Accommodation Network

West Virginia University
Tel: (800) 526-7234www.jan.wvu.edu/

This service of the U.S. Department of Labor offers ideas on how to change a workplace to make it easier for an employee with a disability to do his/her job.

At your workplace:
  • The Human Resources department
  • A union representative

The Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 (ADA) protect people against employment discrimination based on a disability. These laws often cover cancer survivors.

Legal assistance

National Employment Lawyers Association (NELA)

Tel: (415) 296-7629
www.nela.org/

NELA can help find a lawyer experienced in job discrimination cases.

Local Bar Association

Check your local phone book.

Many local bar associations provide information about how to find a lawyer and learn about legal assistance in the local area.

Legal aid or legal services group

Check your local phone book.

Many cities have legal aid groups that help provide free or low-cost legal services.

General legal information

National Coalition for Cancer Survivorship (NCCS)

Tel: (877) NCCS-YES
www.canceradvocacy.org/ e-mail: info@canceradvocacy.org

American Cancer Society (ACS)

Tel: (800) ACS-2345
www.cancer.org/

Cancer Care, Inc., National Office

Tel: (800) 813-HOPE
www.cancercare.org/ e-mail: info@cancercare.org

Cancer Care has information on a wide range of cancer topics, including employment issues.

Health insurance

During treatment, your focus was on getting your health plan to approve your treatments and pay for your care. Now that treatment is over, many people have questions about how their cancer will affect their insurance. Here are some common topics of interest to cancer survivors in the first six months after treatment. Resources for finding out more or getting help are listed for each topic below.

General information about your health insurance policy

National Coalition for Cancer Survivorship (NCCS)

Tel: (877) 622-7937
www.canceradvocacy.org/ e-mail: info@canceradvocacy.org

What Cancer Survivors Need to Know About Health Insurance is a resource that describes types of insurance, how to buy, how to submit claims, and how to handle claim rejection.

Your private insurer

Your insurance company should be able to answer questions about your policy and what it covers. Be sure to ask for answers to questions in writing.

Your state insurance office

Check the phone book for contact information under "State Government." Contact your state insurance office about how/where to get new health insurance.

Health insurance coverage of clinical trials

National Cancer Institute

Tel: (800) 4-CANCER
www.cancer.gov (click on clinical trials area)

For more information on health insurance coverage, see the National Cancer Institute's Web site, or call the Cancer Information Service (CIS).

Health insurance — Legal rights

U.S. Department of Labor (DOL)

Employee Benefits Security Administration
Office of Public Affairs Tel: (202) 693-8664www.dol.gov/ebsa/ (COBRA and ERISA)

Contact the DOL Employee Benefits Security Administration to find out about or confirm your rights under COBRA and ERISA.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA)

Centers for Medicare and Medicaid Services (CMS)
Tel: (800) MEDICAREwww.cms.hhs.gov/

Read here about the Health Insurance Portability and Accountability Act of 1996, which says companies cannot exclude you from group coverage. They also cannot charge more because of past or present medical problems.

State Health Insurance Counseling and Assistance Programs (SHIPS)

To contact your state programs, call the Medicare hotline.
Tel: (800) MEDICAREwww.medicare.gov/

Many states have counseling and assistance programs that can answer your questions and help you understand your health care choices, choose a Medicare plan and/or additional health insurance to meet your needs, and help you understand your rights and protections.

You can also contact your state insurance commission by checking the phone book under "State Government." Ask your doctor, social worker, or pharmacist about programs for which you may be eligible.

Help with medical costs

How can I pay for medicines I need? What about free or low-cost in-home medical care or equipment?

For people who do not have health insurance or who need financial assistance to cover health care costs, resources are available, including government-sponsored programs and services supported by volunteer organizations. For more information, contact the organizations listed here.

Financial assistance

National Cancer Institute

Tel: (800) 4-CANCER

American Cancer Society (ACS)

Tel: (800) ACS-2345
www.cancer.org/

Contact your local unit for information about financial resources in your community. Local ACS units should be listed in the white pages of the phone book under "American Cancer Society."

Cancer Care, Inc., National Office

Tel: (800) 813-HOPE
Fax: (212) 719-0263www.cancercare.org/

  • AVONcares Program
  • Novartis Program for Men with Cancer
  • Hirshberg Fund
  • Regional/local assistance

Provides financial assistance and relevant education and support to low-income, under- and uninsured, underserved men and women throughout the country in need of diagnostic and/or related services (transportation, childcare, and social support) for a variety of cancers.

The Leukemia and Lymphoma Society (LLS)

Tel: (800) 955-4572
www.leukemia-lymphoma.org/ e-mail: infocenter@leukemia-lymphoma.org

Provides information and financial aid to patients who have leukemia, non-Hodgkin's lymphoma, Hodgkin's disease, or multiple myeloma. Callers may request a booklet describing LLS' Patient Aid Program or the telephone number for their local LLS office.

Hill-Burton

Tel: (800) 638-0742
www.hrsa.gov/osp/dfcr/obtain/obtain.htm

Hospitals that receive Hill-Burton funds are required by law to provide some services to people who cannot afford to pay for their hospitalization.

Tax deductions

Internal Revenue Service (IRS)

Tel: (800) 829-1040
www.irs.gov/

Medical costs not covered by insurance policies can sometimes be deducted from annual income before taxes. Examples of tax-deductible expenses can include mileage for trips to medical appointments and out-of-pocket costs for treatment, prescription drugs, or equipment. The local IRS office, tax consultants, or certified public accountants can determine what medical costs are tax-deductible. These telephone numbers can be found in the local phone book.

Transportation assistance

  • Your local unit of the American Cancer Society
  • Your state or local Department of Social Services
  • Your hospital social worker

Nonprofit organizations and some government agencies may arrange free or reduced-cost air transportation for cancer patients traveling to distant cancer treatment centers. Financial need is not always a requirement. To find out about these programs, talk with a hospital social worker.

American Cancer Society (ACS)

Tel: (800) ACS-2345
www.cancer.org/ Call to find your local unit.

The Leukemia and Lymphoma Society (LLS)

Tel: (800) 955-4572
www.leukemia-lymphoma.org/ e-mail: infocenter@leukemia-lymphoma.org Call to find your local chapter.

Eldercare Locator

A service of the National Association of Area Agencies on Aging
Tel: (800) 677-1116

This agency can help coordinate travel for older persons.

Free flight resources

Help paying for medicines

Cancer Information Service (CIS)

Tel: (800) 4-CANCER
TTY: (800) 332-8615

Call the CIS to request information about drug companies that assist cancer patients with low incomes.

Pharmaceutical Research and Manufacturers of America (PhRMA)

Tel: (800) 762-4636
www.phrma.org/

To make it easier for physicians to identify the growing number of programs available for needy patients, PhRMA created a Directory of Prescription Drug Patient Assistance Programs. It lists programs that provide drugs to physicians whose patients could not otherwise afford them.

Indigent Patient Programs

NeedyMeds
www.needymeds.com

Most of the large drug companies have what is called an "Indigent Patient Program." These programs help provide medications to people who cannot afford them. NeedyMeds, an Internet Web site, lists medicine assistance programs available from drug companies.

NOTE: Usually, patients cannot apply directly for these programs. You can ask your doctor, nurse, or social worker to contact them.

State Prescription Drug Assistance Programs

Tel: (800) MEDICARE (Medicare Hotline)
www.medicare.gov

Some states have a pharmaceutical assistance program that will help pay for needed medicines.

For a listing of Prescription Drug Assistance Programs in your state, call or visit the Medicare Web site. You can also ask your doctor or social worker about programs for which you may be eligible.

Credit counseling

National Foundation for Credit Counseling (NFCC)

Tel: (800) 388-2227
www.nfcc.org

NFCC is a national nonprofit network designed to provide assistance to people dealing with stressful financial situations.

You can find nonprofit consumer credit counseling services in your area. If you cannot find one in the phone book, the National Foundation for Consumer Credit, Inc., can direct you to a certified consumer credit counselor in your area.

Hospital Payment Plans
  • Patient Advocate
  • Financial Aid Counselor
  • Social Worker
  • Patient Representative (in the Business Office)

Ask one of these hospital employees about setting up monthly payment plans for hospital bills.

Resources for specific groups

The following resources address concerns of specific groups and include information about aging, resources for minority groups, and women's health.

Aging

AARP

Tel: (800) 424-3410
www.aarp.org

This organization provides many services, including counseling groups, assistance to the homebound, and benefits and entitlement information.

Administration on Aging (AoA)

(US Department of Health and Human Services)
Tel: (202) 619-7501 TTY: (800) 877-8339www.aoa.gov e-mail: aoainfo@aoa.gov

AoA is the Federal focal point and advocate agency for older persons. Through information and referral and outreach efforts at the community level, AoA seeks to educate older people and their caregivers about the benefits and services available to help them.

National Association of Area Agencies on Aging

Tel: (202) 296-8130

Eldercare Locator
Tel: (800) 677-1116

The National Association of Area Agencies on Aging (NAAAA) provides Eldercare Locator, a nationwide directory assistance service designed to help older persons and caregivers find local support resources, including transportation, meals, home care, housing alternatives, legal issues, and social activities.

National Institute on Aging (NIA) (National Institutes of Health)

Tel: (800) 222-2225
www.nih.gov/nia

The National Institute on Aging is involved in research, education, training, information, and referral. This organization provides a broad range of written materials on issues concerning older adults.

Health information for minorities

Cancer Care, Inc., National Office

Tel: (800) 813-HOPE
www.cancercare.org e-mail: info@cancercare.org

Cancer Care is a national nonprofit agency that offers free support to people with cancer.

Intercultural Cancer Council

Tel: (713) 798-4617
iccnetwork.org e-mail: info@iccnetwork.org

The Council promotes policies, programs, partnerships, and research to address the unequal rates of cancer among minority groups. The Web site provides resources and information on this issue.

National Asian Women's Health Organization (NAWHO)

Tel: (415) 989-9747
www.nawho.org e-mail: nawho@nawho.org

NAWHO is working to improve the health status of Asian women and families through research, education, leadership, and public policy programs. They have resources for Asian women in English, Cantonese, Laotian, Vietnamese, and Korean. Publications on subjects such as reproductive rights, breast and cervical cancer, and tobacco control are available.

Office of Minority Health Resource Center (OMHRC)

Tel: (800) 444-6472
TDD: (301) 230-7199www.omhrc.gov

The Center is one of the nation's largest sources of minority health information. It offers fact sheets, publications, and a newsletter on issues related to minority health.

Women's Health

Office on Women's Health

Tel: (800) 994-9662
TTY: (888) 220-5446www.4women.org

This center offers information on various women's health issues, including body image, nutrition, mammography, pregnancy and older women's issues.

Other resources by topic

Here are some groups that can help you with other questions you might have, including information about such specific topics as alternative medicine, diet, genetic counseling, and rehabilitation.

Complementary and alternative medicine

National Center for Complementary and Alternative Medicine (NCCAM)

Tel: (888) 644-6226
TTY: (866) 464-3615www.nccam.nih.gov e-mail: info@nccam.nih.gov

The Center provides reliable information about the safety and effectiveness of complementary and alternative medicine (CAM) practices.

Consumer health

Healthfinder

www.healthfinder.gov

The U.S. Department of Health and Human Services' Healthfinder gives reliable consumer health information. It links to online publications, clearinghouses, databases, Web sites, and support and self-help groups, as well as government agencies and not-for-profit organizations that produce reliable information for the public.

Genetic counseling

Cancer Genetics Web Site

www.cancer.gov/cancer_information/prevention

Cancer Genetics Services Directory

www.cancer.gov/search/genetics_services
Tel: (800) 4-CANCER

These resources can provide information on cancer genetics or help you locate a cancer genetics counselor.

Dana-Farber's Cancer Risk and Prevention Clinic

Rehabilitation

National Rehabilitation Information Center (NARIC)

Tel: (800) 346-2742
TTY: (301) 495-5626www.naric.com

The Center provides information and referrals to the public and those involved in the care of people with physical or mental disabilities.

Cancer organizations

The following groups can offer additional information, such as where to find a support group, more detailed information about specific types of cancer, and various services for cancer survivors and their families.

American Cancer Society (ACS)

Tel: (800) ACS-2345
www.cancer.org

American Foundation for Urologic Disease (AFUD)

Tel: (800) 242-2383
www.afud.org e-mail: admin@afud.org

The AFUD supports research; provides education to patients, the general public, and health professionals; and offers patient support services for those who have or may be at risk for a urologic disease or disorder. They provide information on urologic disease and dysfunctions, including prostate cancer treatment options, bladder health, and sexual function. They also offer prostate cancer support groups (Prostate Cancer Network). Some Spanish-language publications are available.

American Institute for Cancer Research (AICR)

Tel: (800) 843-8114
www.aicr.org e-mail: aicrweb@aicr.org

The AICR provides information about cancer prevention, particularly through diet and nutrition. They offer a toll-free nutrition hotline, pen pal support network, and funding of research grants.

Cancer Care, Inc., National Office

Tel: (800) 813-HOPE
www.cancercare.org e-mail: info@cancercare.org

Cancer Care is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency's Web site.

Cancer Hope Network

Tel: (877) HOPENET
www.cancerhopenetwork.org e-mail: info@cancerhopenetwork.org

The Cancer Hope Network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience.

Cancer Information and Counseling Line (CICL)

Tel: (800) 525-3777
www.amc.org e-mail: cicl@amc.org

The CICL, part of the Psychosocial Program of the AMC Cancer Research Center, is a toll-free telephone service for cancer survivors, their family members and friends, and the general public. Professional counselors provide up-to-date medical information, emotional support through short-term counseling, and resource referrals to callers nationwide.

Gilda's Club, Inc.

Tel: (917) 305-1200 (call for your local chapter)
www.gildasclub.org

Gilda's Clubs provide social and emotional support to cancer patients, their families, and friends. Lectures, workshops, networking groups, special events, and a children's program are available.

Lance Armstrong Foundation

Tel: (512) 236-8820
www.laf.org

The Lance Armstrong Foundation (LAF) seeks to enhance the quality of life for those living with, through, and beyond cancer. The Foundation focuses its activities on the following areas: survivor services and support, groundbreaking survivorship programs, and medical and scientific research grants.

National Coalition for Cancer Survivorship (NCCS)

Tel: (877) NCCS YES
www.canceradvocacy.org e-mail: info@canceradvocacy.org

To order the Cancer Survival Toolbox:

Tel: (877) TOOLS-4-U
www.canceradvocacy.org/programs

NCCS is a network of groups and individuals offering support to cancer survivors and their loved ones. It provides information and resources on cancer support, advocacy, and quality-of-life issues.

National Lymphedema Network (NLN)

Tel: (800) 541-3259
www.lymphnet.org e-mail: nln@lymphnet.org

The NLN provides education and guidance to lymphedema patients, health care professionals, and the general public by providing information on the prevention and management of primary and secondary lymphedema. The Network provides a toll-free support hotline; a referral service to lymphedema treatment centers and health care professionals; a newsletter; and a computer database.

Patient Advocate Foundation (PAF)

Tel: (800) 532-5274
www.patientadvocate.org e-mail: help@patientadvocate.org

The PAF provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.

R. A. Bloch Cancer Foundation, Inc.

Tel: (816) WE-BUILD
www.blochcancer.org e-mail: hotline@hrblock.com

The R. A. Bloch Cancer Foundation matches newly diagnosed cancer patients with trained, home-based volunteers who have been treated for the same type of cancer. They also distribute informational materials, including a multidisciplinary list of institutions that offer second opinions.

United Ostomy Association

Tel: (800) 826-0826
www.uoa.org e-mail: uoa@deltanet.com

The United Ostomy Association helps ostomy patients through mutual aid and emotional support. It provides information to patients and the public and sends volunteers to visit with new ostomy patients.

The Leukemia and Lymphoma Society (LLS)

Tel: (800) 955-4572
www.leukemia-lymphoma.org e-mail: infocenter@leukemia-lymphoma.org

The goal of LLS is to find cures for leukemia, lymphoma, Hodgkin's disease, and multiple myeloma and to improve the quality of life of patients and their families. LLS supports medical research and provides health education materials and services for patients and families.

The Wellness Community (National)

Tel: (888) 793-WELL
www.wellness-community.org e-mail: help@wellness-community.org

The Wellness Community provides free psychological and emotional support to cancer patients and their families. They offer support groups facilitated by licensed therapists, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events.

Organization guidelines for follow-up care

The following organizations have guidelines for follow-up care for some cancers. You can use these guidelines when you talk with your doctor or other health care providers. These guidelines are not meant to contradict or take the place of your provider's knowledge or judgment.

American Society of Clinical Oncology (ASCO)

Tel: (888) 651-3038 or (703) 299-0150
www.asco.org (Guidelines for breast and colorectal cancer)

National Comprehensive Cancer Network

Tel: (888) 909-NCCN
www.NCCN.org (Guidelines for prostate, ovarian, neuroendocrine, hepatocellular, gall bladder, thyroid, bone, skin, colon and rectal cancers; breast cancer in situ; melanoma; cholangiocarcinoma; and adult AML)

Source: U. S. National Cancer Institute, Facing Forward Series: Life After Cancer

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