Using the Internet for Medical Advice
The Cancer Survivors' Bill of Rights
Getting Information from the National Cancer Institute
Organizations Where You Can "Make a Difference"
Cancer Organizations
Organizations by Cancer Type
Employment and Legal Rights for Cancer Survivors

Thinking About Your Choices: A Guide

After you've done some work in cancer-related activities, think about the choices you made. Then, answer the questions below. You may want to print this out for a reference.

1. What did you do to make a difference in cancer?
EXAMPLE:

I called my local cancer center volunteer office; found out about a training to help other survivors; went to the training and was a buddy to two men diagnosed with prostate cancer.

2. Did you find this was the right time for you to get involved? (circle one)

• Yes
• No

If NO, think about waiting a little while and trying again. If YES, answer the next questions:

3. What did I like best?

4. What did I like least?

5. Do I like doing this work? (circle one)

• Yes
• No

If NO...
If you don't like this activity or organization, think about changing what you are doing. For example:

• If you are working on your own, think about working with an organization.
• If you are working with an organization, think about working on your own.
• Switch to another area of interest.
• Switch to another organization.

It may take some time to find the activity you like best. Sooner or later, you will find an activity that is the right match for you.

If YES...
If you like what you are doing, you can:

• Keep doing it.
• Decide whether you want to do more. Read this document again and find other activities that interest you.

Remember to slow down. You need to take care of yourself before you can make a difference in the lives of others.

Using the Internet for Medical Advice

The Internet is a tool many people use to find medical information and advice. This includes Web sites as well as online discussion groups such as listservs and chat rooms.

The Internet can be a valuable source of information about cancer. But sometimes Internet information can be false, unreliable, or misleading. Don't believe everything you see on the Internet. Talk with your doctor about the medical advice you find and make sure the information makes sense for you.

Here are eight questions to keep in mind when using the Internet for medical advice.

1. Who runs this site?
   All Web sites should include the name of the organization that sponsors (pays for) it, as well as the person who runs the Web site.
2. What is the purpose of the site?
   The purpose (or goal) of the site should be clearly stated. You can often find this by clicking on a link that says, "About This Site," or similar words.
3. Who pays for the site?
   It costs money to run a Web site. Find out if the site includes advertisements such as "banner ads." Think about the company that pays for the site; they may only want you to know about their services or products.
4. Where does the information come from?
   Many Web sites include information from other sources. The Web site should make clear where information comes from. All medical articles should have a list of references where you can go to learn more. Opinions and advice should be clearly labeled and set apart from information based on research results.
5. How is the information selected?
   Is there an editorial board? Do people with good medical qualifications review the material before it is posted?
6. How current is the information?
   Web sites should be reviewed and updated on a regular basis. It is important that medical information be current and that its most recent update or review date appears on the site. Even if the information has not changed, you need to know that the site "owners" have reviewed it recently to make sure the information is still correct.
7. How can users contact the Web site "owners"?
   There should always be a way for you to contact the site owners with problems, feedback, and questions.
8. How does the chat room or discussion area work?
   If the site has a chat room or other online discussion areas, it should tell you how the service works. Is it led by someone? By whom, and why? It is always a good idea to spend time reading the discussion before joining in, so that you feel comfortable with the environment before you get involved.

The Cancer Survivors' Bill of Rights

The National Coalition for Cancer Survivorship presents this version of the Survivors' Bill of Rights to call public attention to survivor needs, to enhance the quality of cancer care, to empower cancer survivors, and at the same time bring greater satisfaction to them and their physicians, employers, families and friends.

Survivors have the right to continuous lifelong medical care, as needed. The physicians and other professionals involved should make every effort to be:

• Sensitive to cancer survivors' lifestyle choices and their need for selfesteem, dignity and privacy of the information trusted to them;
• Careful, no matter how long these patients have survived, to take symptoms seriously, and not to dismiss aches and pains, for fear of recurrence is a normal part of survivorship;
• Vigilant to watch for any long-term and late effects of cancer and its treatment in followup clinics and offices;
• Informative and open, providing survivors with as much or as little candid medical information as they wish, and encouraging informed participation, but not expecting survivors to manage that care on their own;
• Knowledgeable about counseling and rehabilitation resources and willing to refer survivors and their families as appropriate for emotional support and therapy aiming to improve the texture as well as the quantity of time that is theirs to live.

No matter in which setting their care is offered--be it fee-for-service or some sort of managed care system--survivors have the right to quality care emphasizing:

• Informed choice--choice of the setting in which care is delivered, choice of primary physicians and specialists delivering that care, as well as choice of appropriate, effective and safe treatments (including ongoing clinical trials);
• Efficient yet humane management of such unfortunate by-products of disease as fatigue and pain--pain control management for example, which approaches survivors more as partners in identifying the proper amount of medication needed at any given time than as potential drug addicts;
• Appropriate use of hospital and other facilities, wherein cost effectiveness and patient-centered care are balanced so that no survivor is dismissed--after a mastectomy, for example--unable to care for her or himself or secure the care needed to avoid dangerous and painful situations;
• Constant respect for survivors' wishes as to when and how to discontinue treatment should that time arise, including the scrupulous honoring of "living wills" and similar documents.

In their personal lives, survivors, like other Americans, have the right to the pursuit of happiness. This means they have the right:

• To talk with their families and friends about their cancer experience if they wish, but to refuse to discuss it if that is their choice, and not to be expected to be more upbeat or less blue than anyone else;
• To be free of the stigma of cancer as a "dread disease" in all social relations, wherever they may take place--from home to work or market place;
• To be free of blame for having the disease and of guilt for having survived it;
• To participate in support groups and other survivor support and/or advocacy activities as they wish, for in such settings they usually feel less isolated, more informed, and more able to express their feelings, be they feelings of hope or of despair, without fear of being regarded as "bad" or "ungrateful" or simply "uncooperative" patients.

In the workplace, survivors have the right to equal job opportunities. This means they have the right:

• To aspire to jobs worthy of their skills, and for which they are trained and experienced, and thus to not have to accept jobs they would not have considered before their cancer experience;
• To be hired, promoted, and accepted on return to work, according to their individual abilities and qualifications, and not according to "cancer" or "disability" stereotypes with "reasonable accommodation" under Federal and state law such as changes in duties or hours, which allows them to work while receiving medical treatment without falling into a survivors "Catch 22"--too ill to work, but too healthy to qualify as "disabled" and so entitled to protection under the Americans with Disabilities Act;
• To privacy about their medical histories.

Since health insurance is an urgent survivorship concern, every effort should be made to assure all survivors decent affordable coverage, whether public or private or provided under managed care or fee-for-service systems. This means:

• For employers, that survivors have the right to be included in group health coverage regardless of health history;
• For physicians, counselors, and other professionals concerned, that they keep themselves and their survivor-clients informed and up-to-date on the dangers of health insurance discrimination;
• For social policy makers, both in government and in the private sector, that they seek both to broaden insurance programs to include diagnostic procedures and treatments which help prevent recurrence and ease survivor anxiety and pain, as well as to lower the unfair barriers often imposed by the accidents of race, minority culture, age or plain lack of means to pay for adequate health insurance coverage.

In sum, cancer survivors have the overriding right to access quality health care. Implicit in that right is universal access to adequate health insurance coverage. For "quality" becomes an empty word without the means to achieve such coverage. A cancer may not even be discovered. And if it is, care may be sub-optimal, no one will be accountable for it and the whole society will be the losers.

Getting Information from the National Cancer Institute

The Cancer Information Service (CIS), a program of the National Cancer Institute (NCI), is a resource for information and education about cancer. Through the CIS toll-free telephone number, callers can speak with knowledgeable staff who can explain medical information in terms they can easily understand. CIS staff can provide:

• Answers to questions about cancer.
• Written materials from the NCI.
• Referrals to clinical trials and cancer-related services.
• Assistance in quitting smoking (from information specialists trained in smoking cessation counseling).

Call 1-800-4-CANCER (1-800-422-6237), 9:00 a.m. to 4:30 p.m., local time, Monday through Friday. Deaf or hearing-impaired callers with TTY equipment should call 1-800-332-8615.

Call 1-800-4-CANCER and select Option 4 to hear recorded information.

Visit the CIS Web site at http://cis.nci.nih.gov and click on the LiveHelp link between 9:00 a.m. and 5:00 p.m., Eastern time, Monday through Friday.

NCI provides access to a large number of publications. To order these materials, go to the NCI home page, Cancer.gov, and click on "Publications Locator." Follow the instructions on your screen.

Organizations Where You Can "Make a Difference"

The following organizations provide information, support and other resources to cancer survivors and those who have helped someone through cancer. Many of these groups may also have volunteer opportunities in your community, or at the state or national level.

NOTE: This list was current as of spring 2002. For an up-to-date list of groups, see the NCI Fact Sheet: National Organizations That Offer Services to People with Cancer and Their Families, or call 1-800-4-CANCER.

Cancer Organizations

Organizations by Cancer Type

Employment and Legal Rights for Cancer Survivors

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

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.

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