“doctor, can we talk?”

Talking to your doctor can be difficult if you’re a teen with cancer. No matter what your diagnosis, simply hearing “you have cancer” can leave you feeling frightened or overwhelmed. Fortunately, there are several things you can do to make communicating with your doctor easier and better.

We want to help you be Patient Active in your recovery. We have put together some helpful tips for communicating with your doctor, nurse, or health care team.

remember that you are the customer

It is important to remember that you are the health care customer. Just as you would not choose a new stereo without asking questions, you should know that it is OK to ask your health care team questions about your illness and/or treatments. A good way to begin making difficult decisions about your health is to educate yourself and encourage your family to do the same. Here are some tips that can help you talk to your doctor.

• Write out a list of questions beforehand. When you are discussing something as important as your health, it is easy to become nervous or upset. A list will help you remember important questions. Doctors are very busy and often have limited time. So, make your questions specific and brief and ask the most important ones first.
  
• Write down the answers you get. Writing down answers will help you remember your doctor’s responses and instructions. It will also help you think about what you learned after you leave their office. Sometimes it is helpful to take notes or bring along someone else (aunt, cousin, friend, brother or sister) to take notes so you and your parents can just listen.
  
• If possible, bring a tape recorder. It is OK to ask your doctor if you can tape-record your visit. Taping is helpful because you may find yourself wanting to hear encouragement about the diagnosis, just listen to the explanation again, or share it with friends and family.

make sure you understand what you are saying and hearing

Use “I” statements.
When you are talking to your doctor, use “I” statements. For example, phrases like “I don’t understand” or “I’m confused” are much more effective than “You’re not making any sense.”

Be direct and honest.
If you don’t know what a word means, ask. Remember to make your questions specific and brief. If there is something you can’t understand or resolve in a brief visit, then ask your doctor if there is another time that you can meet to discuss it further.

Some things your health care team says may be confusing. If so, repeat it back to your doctor so you can confirm the meaning and be sure that you understand what he/she is saying. For example, you might say, “You mean I should….” If you think you will understand better with pictures, ask to see X-rays, slides, or have the doctor draw a diagram.

questions that can help in cancer treatment and follow-up

Here are some questions that you and your family may want to ask your health care team. They will help you begin to learn about how treatment will affect you.

• What is the best treatment for my diagnosis?
• Are there other options available?
• What are the side effects of treatment?
• What can I do to prevent or lessen these side effects?
• What is the goal I should be working for? Cure? Remission?
• How long and how often will I have this treatment?
• How and when will we be able to determine if the treatment is working?
• Should I get a second opinion?

sources of information

The Internet now provides people with cancer with large amounts of information. When you combine that information with other information available in doctors offices, hospitals and cancer organizations, it can be overwhelming.

All of these sources can make it difficult to determine what information may be most helpful for your specific diagnosis or which information is trustworthy. We have worked to provide a way to break through that clutter and help you find information that may be most helpful to you and your parents.

• There is an enormous amount of information about cancer on the Internet. The Group Loop web site provides links to high-quality sources of information for all cancer diagnoses and treatments.
  
• Most doctors offices’ and Childrens Hospital’s have pamphlets and brochures on cancer and cancer treatment. If not, other places you may look are centers for medical consumers or pharmacies. Your local library will have medical journals and reference books. You can go to www.childrensoncologygroup.org for other materials on cancer related subjects for children and teens.
  
• An organization called Cancer Care has a free publication, A Helping Hand: The Resource Guide for People with Cancer. It features over 100 pages of regional and national nonprofit organizations that are available to help you and your family in finding support and information. Call Cancer Care at 1-800-813-HOPE, view the guide online at www.cancercare.org or request a copy of the guide via e-mail at info@cancercare.org.
  
• In addition to your doctor, use your entire health care team –nurses, social workers, and medical personnel – as resources.

the important thing to remember:

talking will help you get better care and improve the quality of your life.