Your doctor gave you a diagnosis that could change your life. This document can help you take the next steps.

Every person is different, of course, and every person's disease or condition will affect them differently. But research shows that after getting a diagnosis, many people have some of the same reactions and needs.

Five Basic Steps

This document describes five basic steps to help you cope with your diagnosis, make decisions, and get on with your life.

Step 1: Take the time you need. Do not rush important decisions about your health. In most cases, you will have time to carefully examine your options and decide what is best for you.

Step 2: Get the support you need. Look for support from family and friends, people who are going through the same thing you are, and those who have "been there." They can help you cope with your situation and make informed decisions.

Step 3: Talk with your doctor. Good communication with your doctor can help you feel more satisfied with the care you receive. Research shows it can even have a positive effect on things such as symptoms and pain. Getting a "second opinion" may help you feel more confident about your care.

Step 4: Seek out information. When learning about your health problem and its treatment, look for information that is based on a careful review of the latest scientific findings published in medical journals.

Step 5: Decide on a treatment plan. Work with your doctor to decide on a treatment plan that best meets your needs.

As you take each step, remember this: Research shows that patients who are more involved in their health care tend to get better results and be more satisfied.

Although most of the published research referred to in this publication focuses on cancer, it likely is relevant to people with other diseases and conditions as well.

A Diagnosis Can Change Your Life in an Instant

Like so many other people in your situation, you might be feeling one or more of the following emotions after getting your diagnosis:

• Afraid.
• Alone.
• Angry.
• Anxious.
• Ashamed.
• Confused.
• Depressed.
• Helpless.
• In denial.
• Numb.
• Overwhelmed.
• Panicky.
• Powerless.
• Relieved (that you finally know what's wrong).
• Sad.
• Shocked.
• Stressed.

It is perfectly normal to have these feelings. It is also normal, and very common, to have trouble taking in and understanding information after you receive the news—especially if the diagnosis was a surprise. And it can be even harder to make decisions about treating or managing your disease or condition.

Take Time To Make Your Decisions

No matter how the news of your diagnosis has affected you, do not rush into a decision. In most cases, you do not need to take action right away. Ask your doctor how much time you can safely take.

Taking the time you need to make decisions can help you:

• Feel less anxious and stressed.
• Avoid depression.
• Cope with your condition.
• Feel more in control of your situation.
• Play a key role in decisions about your treatment.

You Do Not Have To Go Through It Alone

Sometimes the emotional side of illness can be just as hard to deal with as the physical side. You may have fears or concerns. You may feel overwhelmed. No matter what your situation, having other people to turn to will help you know you are not alone.

Here are the kinds of support you might want to seek:

Family and friends

Talking to family and friends you feel close to can help you cope with your illness or condition. Just knowing that someone is there can be a comfort.

Sometimes it is hard to ask for help. And sometimes your family and friends want to help, but they do not want to intrude, or they do not know how to ask or what to offer. Think about specific ways people can help you. One idea is to ask someone to come with you to a doctor's appointment to help ask questions, take notes, and talk with you afterward.

If you do not have family or friends who can provide support, other people or groups can.

Support or self-help groups

Support groups are made up of people with the same disease or condition who get together to share information and concerns and to help one another.

Support groups may or may not be led by experts. Self-help groups are similar to support groups but usually are led by the participants. The names "support group" and "self-help group" sometimes are used to refer to either kind.

Research on support groups shows that participants feel less anxious, experience less depression, have a better quality of life, and have more success coping with their disease or condition. Similar findings have been reported for self-help groups.

Online support or self-help groups

The Internet has support or self-help groups for people whose concerns and situations may be similar to yours. You can also find "message boards," where you can post questions and get answers. These online communities can help you connect with people who can give you support and provide information.

But be careful. Not every idea or treatment you come across in these groups will be scientifically proven to be safe and effective. If you read about something interesting and new, check it out with your doctor.

Counselor or therapist

A good counselor or therapist can help you cope with sadness, depression, and feelings of being overwhelmed. If you think this kind of help might be right for you, ask your doctor or other health care professional to recommend someone in your area.

People like you

You might want to meet and talk with someone in your own situation. Someone who has "been there" can talk about the real-life outcomes of their treatment choices as well as how they have learned to live with their disease or condition. Some advocacy or support groups can help you make this kind of contact.

Your Doctor Is Your Partner in Health Care

You probably have many questions about your disease or condition. The first person to ask is your doctor.

It is fine to seek more information from other sources; in fact, it is important to do so. But consider your doctor your partner in health care—someone who can discuss your situation with you, explain your options, and help you make decisions that are right for you.

It is not always easy to feel comfortable around doctors. But research has shown that good communication with your doctor can actually be good for your health. It can help you to:

• Feel more satisfied with the care you receive.
• Have better outcomes (end results), such as reduced pain and better recovery from symptoms.

Being an active member of your health care team also helps to reduce your chances of medical mistakes, and it helps you get high-quality care.

Of course, good communication is a two-way street. Here are some ways to help make the most of the time you spend with your doctor:

Prepare for Your Visit

• Think about what you want to get out of your appointment. Write down all your questions and concerns.
• Prepare and bring to your doctor visit a list of all the medicines you take.
• Consider bringing along a trusted relative or friend. This person can help ask questions, take notes, and help you remember and understand everything once you leave the doctor's office.

Give Information to Your Doctor

• Do not wait to be asked.
• Tell your doctor everything he or she needs to know about your health—even the things that might make you feel embarrassed or uncomfortable.
• Tell your doctor how you are feeling—both physically and emotionally.
• Tell your doctor if you are feeling depressed or overwhelmed.

Get Information from Your Doctor

• Ask questions about anything that concerns you. Keep asking until you understand the answers. If you do not, your doctor may think you understand everything that is said.
• Ask your doctor to draw pictures if that will help you understand something.
• Take notes.
• Tape record your doctor visit, if that will be helpful to you. But first ask your doctor if this is okay.
• Ask your doctor to recommend resources such as Web sites, booklets, or tapes with more information about your disease or condition.

Do Not Hesitate To Seek a Second Opinion

A second opinion is when another doctor examines your medical records and gives his or her views about your condition and how it should be treated.

You might want a second opinion to:

• Be clear about what you have.
• Know all of your treatment choices.
• Have another doctor look at your choices with you.

It is not pushy or rude to want a second opinion. Most doctors will understand that you need more information before making important decisions about your health.

Check to see whether your health plan covers a second opinion. In some cases, health plans require second opinions.

Here are some ways to find a doctor for a second opinion:

• Ask your doctor. Request someone who does not work in the same office, because doctors who work together tend to share similar views.
• Contact your health plan or your local hospital, medical society, or medical school.
• Use the DoctorFinder online service of the American Medical Association. Go to: http://dbapps.ama-assn.org/aps/amahg.htm.

Get Information About Next Steps

• Get the results of any tests or procedures. Discuss the meaning of these results with your doctor.
• Make sure you understand what will happen if you need surgery.
• Talk with your doctor about which hospital is best for your health care needs.

Finally, if you are not satisfied with your doctor, you can do two things:

1. Talk with your doctor and try to work things out.
2. Switch doctors, if you are able to.

It is very important to feel confident about your care.

These 10 basic questions can help you understand your disease or condition, how it might be treated, and what you need to know and do before making treatment decisions.

1. What is the technical name of my disease or condition, and what does it mean in plain English?

_______________________________________________________________

2. What is my prognosis (outlook for the future)?

_______________________________________________________________

3. How soon do I need to make a decision about treatment?

_______________________________________________________________

4. Will I need any additional tests, and if so what kind and when?

_______________________________________________________________

5. What are my treatment options?

_______________________________________________________________

6. What are the pros and cons of my treatment options?

_______________________________________________________________

7. Is there a clinical trial (research study) that is right for me?

_______________________________________________________________

8. Now that I have this diagnosis, what changes will I need to make in my daily life?

_______________________________________________________________

9. What organizations do you recommend for support and information?

_______________________________________________________________

10. What resources (booklets, Web sites, audiotapes, videos, DVDs, etc.) do you recommend for further information?

_______________________________________________________________

Now that you know your treatment options, you can learn which ones are backed up by the best scientific evidence. "Evidence-based" information—that is, information that is based on a careful review of the latest scientific findings in medical journals—can help you make decisions about the best possible treatments for you.

Evidence-based Information Comes From Research on People Like You

Evidence-based information about treatments generally comes from two major types of scientific studies:

• Clinical trials are research studies on human volunteers to test new drugs or other treatments. Participants are randomly assigned to different treatment groups. Some get the research treatment, and others get a standard treatment or may be given a placebo (a medicine that has no effect), or no treatment. The results are compared to learn whether the new treatment is safe and effective.
• Outcomes research looks at the impact of treatments and other health care on health outcomes (end results) for patients and populations. End results include effects that people care about, such as changes in their quality of life.

Take Advantage of the Evidence-based Information That Is Available

Health information is everywhere—in books, newspapers, and magazines, and on the Internet, television, and radio. However, not all information is good information. Your best bets for sources of evidence-based information include the Federal Government, national nonprofit organizations, medical specialty groups, medical schools, and university medical centers.

Steer Clear of Deceptive Ads and Information

While searching for information either on or off the Internet, beware of "miracle" treatments and cures. They can cost you money and your health, especially if you delay or refuse proper treatment. Here are some tip-offs that a product truly is too good to be true:

• Phrases such as "scientific breakthrough," "miraculous cure," "exclusive product," "secret formula," or "ancient ingredient."
• Claims that the product treats a wide range of ailments.
• Use of impressive-sounding medical terms. These often cover up a lack of good science behind the product.
• Case histories from consumers claiming "amazing" results.
• Claims that the product is available from only one source, and for a limited time only.
• Claims of a "money-back guarantee."
• Claims that others are trying to keep the product off the market.
• Ads that fail to list the company's name, address, or other contact information.

At this point, you have learned about your disease or condition and how it can be treated or managed. Your information may have come from the following sources:

• Your doctor.
• Second opinions from one or more other doctors.
• Other people who are or were in the same situation as you.
• Information sources such as Web sites, health or medical libraries, and nonprofit groups.

Work With Your Doctor To Make Decisions

When you are ready to make treatment decisions, you and your doctor can discuss:

• Which treatments have been found to work well, or not work well, for your particular condition.
• The pros and cons of each treatment option.

Make sure that your doctor knows your preferences and feelings about the different treatments—for example, whether you prefer medicine over surgery.

Once you and your doctor decide on one or more treatments that are right for you, you can work together to develop a treatment plan. This plan will include everything that will be done to treat or manage your disease or condition—including what you need to do to make the plan work. Remember, being an active member of your health care team helps to reduce your chances of medical mistakes, and it helps you get high-quality care.

Take Another Deep Breath

You have taken important steps to cope with your diagnosis, make decisions, and get on with your life. Remember two things:

• Call on others for support as you need it.
• Make use of evidence-based information for any future health decisions.