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Cancer Support: Being an Active Patient

Cancer Support: Being an Active Patient

Topic Overview

Dealing with cancer is hard enough without feeling like you have to make decisions, ask your doctor questions, and be part of your treatment team.

It may seem easier to just let your doctors handle everything.

But it's a fact that when you are an "active patient"—when you and your doctors make decisions together—you're more likely to be happier with your care and have better medical results. 1

How do you become an active patient?

Get the facts. Ask questions. Learn all you can. If you don't understand something, ask your doctor to explain it again.

Bring a support person. Bring a trusted friend or relative to every appointment. This support person can ask questions you forgot to ask or help you remember later what your doctor said.

Take the lead. Go to all your appointments. Speak up for yourself. Make sure the medicine you get at the drugstore is the right one.

Ask lots of questions. At every stage of your testing, diagnosis, and treatment, ask your doctor if there is anything you may not be prepared for or aren't expecting. For example, you could ask, "What are the things about this (test, surgery, treatment) that patients wish they'd known about ahead of time?"

Use your whole team. Ask your doctor who else is on your treatment team and how they can be resources for you. For example, a nurse practitioner may be more available than your doctor when questions come up. Or your team may include a dietitian, a massage therapist, or a social worker.

Be part of each decision. Make your own feelings and values part of your decision. Talk to loved ones who will be affected by it. Make a list of pros and cons for each option. Share all this with your doctor.

Make an action plan. After you and your doctor have made a decision, find out what you can do to make sure that you will have the best possible outcome. Write down the steps that you need to take next. Think positively about your decision.

What questions should you ask?

Even the smartest people in the world have trouble thinking clearly at the doctor's office, especially when the subject is as serious as cancer. That's why taking a trusted relative or friend with you is such a good idea. And it may help if you write down the questions you want to ask and bring the list with you.

Questions for the doctor
Questions to ask about ...
Your diagnosis Tests Medicine
  • What are my treatment choices?
  • How well does each treatment work?
  • What are the risks and side effects of each treatment?
  • What happens if I don't have treatment?
  • What lifestyle changes do I need to make?
  • How can I explain this diagnosis to others?
  • Should I have genetic testing?
  • What should I expect after treatment?
  • Will I need to have tests to monitor the treatment?
  • Where can I get a second opinion?
  • Why is this test important?
  • What will it be like?
  • Will it hurt? If so, will you give me medicine so that I don't feel pain?
  • How accurate will the results be?
  • What are the risks and benefits of the test?
  • Can I have a copy of my test results?
  • How soon can I get the test results?
  • How much will it cost?
  • How does this medicine work?
  • Are there side effects?
  • Is it okay to take this medicine along with my other medicines?
  • How long will I have to take it?
  • How much will it cost?

 

More questions for the doctor
Questions to ask about ...
Chemotherapy Radiation Surgery
  • How will the chemotherapy drugs be given to me?
  • What will it feel like?
  • Will my hair fall out? When?
  • How often will I have chemo?
  • How long will chemo treatments take?
  • What is a chemo port? Will I need one?
  • If I need a chemo port installed, can I have anesthesia ?
  • Can I have anesthesia while the port is being removed?
  • How much will it cost?
  • What will radiation feel like?
  • Will it affect my ability to have children?
  • Will my hair fall out?
  • What will happen to my skin?
  • Will this affect breast reconstruction?
  • How long will radiation treatments take?
  • How often will I have treatments?
  • How much will it cost?
  • How many times have you done this operation?
  • Exactly what will happen in surgery?
  • Will I wake up with tubes coming out of my body?
  • Will I be in pain afterward?
  • What will the scars look like?
  • What kind of treatment will I need after surgery?
  • How much will it cost?

How do you find reliable information?

Most people search the Internet for information about their cancer. That can be confusing, and some information isn't true or isn't reliable. But there are ways to find good information.

Look for websites you can trust. For example, the information you collect should be based on sound medical research, not the results of a single study or facts published by a company that will profit by your using its product. Ask your doctor to explain any information you have questions about.

Ask your doctors. They may have information you can borrow. Or they will know of websites that are reliable.

Contact national organizations. A number of national organizations are in the business of helping patients. The major organizations include:

  • American Cancer Society (ACS). The ACS has reliable information about various cancers, available in English, Spanish, and Chinese. On the Internet, go to www.cancer.org. Or call 1-800-227-2345.
  • National Cancer Institute (NCI). This is a government agency that provides up-to-date information about cancer and its prevention, detection, and treatment. You can also contact trained staff with questions. Spanish-speaking staff members are available. Contact the NCI on the Internet at www.cancer.gov, or call 1-800-422-6237.
  • National Comprehensive Cancer Network (NCCN). This network includes many of the world's leading cancer centers and can help you make informed choices about cancer care. The NCCN, with the American Cancer Society, publishes NCCN Guidelines for Patients, which are easy-to-read resources about many cancers. Contact the NCCN on the Internet at www.nccn.com, or call (215) 690-0330.
  • Patient Advocate Foundation. This is a nonprofit organization that helps people get the care they need. It also helps patients keep their jobs and maintain financial stability. The Foundation supports legislation that benefits cancer patients. It offers information in Spanish as well as English. You can contact the Patient Advocate Foundation on the Internet at www.patientadvocate.org, or call 1-800-532-5274.

Go to your local public library. Public libraries often have medical sections that contain books with general information about cancer. If you're not sure how to find what you need, ask a librarian to help you.

See if your local hospital has a medical library that is open to the public. Many are. They may even have some books and online resources that are written specifically for patients rather than doctors. You can ask a librarian to help you find books or articles.

What can you do about waiting for test results?

Waiting to hear about a result that may change your life can be one of the worst things about cancer treatment.

While it may seem like your doctor isn't giving you good service, try to remember that most doctors, clinics, labs, and hospitals are very busy. That said, there's no reason why you have to sit by the phone and wait.

You can be an active patient without worrying that you're being rude. Here are some tips:

  • If you're not told when to expect the results, ask. Remind the doctor, nurse, or other health professional how hard the waiting is going to be.
  • Ask if it's possible to get the results sooner, especially before the weekend.
  • Ask for the best phone number to call for results.
  • If you don't get a call back when you think you should, call again. And keep calling.
  • Will people think you're a pest if you call every day—or twice a day? Who cares? It's your life and your money.

References

Citations

  1. Agency for Healthcare Research and Quality (2011). Be More Involved in Your Health Care: Tips for Patients (AHRQ Publication No. 10[11]-0094-A). Rockville, MD: Agency for Healthcare Research and Quality. Also available online: http://www.ahrq.gov/consumer/beinvolved.htm.

Credits

By Healthwise Staff
Primary Medical Reviewer E. Gregory Thompson, MD - Internal Medicine
Specialist Medical Reviewer Catherine D. Serio, PhD - Behavioral Health
Current as of June 18, 2012
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