Finding & Using Cancer Information

A few suggestions

One of the most important truths about cancer is that each person's diagnosis or experience is different, so how you search for and use information depends upon how you feel. Some will dive in; others will test the water. 

• Basics
• Clinical trials
• Medical interpreter
• Advocacy
• Communicating with your health care team
• Medications, herbs and non-prescription drugs
• Managing medical information
• Friends and caregivers: Some ideas & suggestions about what you can do

Treating the "whole patient" is important. Cancer is a disease that affects the mind and the spirit, as well as the body. We hope that the information and questions suggested here will help you. We encourage you to ask questions of your doctor(s) and others on your health care team.

Credible information can reduce anxiety and confusion. It also can reduce the demand on physicians', nurses' and receptionists' time, thus increasing the quality of time between the patient and the health care provider.

Understanding the kind of cancer you have and the treatment that is recommended is important. You will need to work closely with your doctor and other members of the medical team. Your "team" may include doctors, nurses, nutritionists, psychologists, social workers, physical therapists, and others, and, of course, you. 

Your culture and your family may influence how you think of "cancer," its treatments and how you make medical decisions. Be aware of this. Discuss this with your doctor.

Once your doctor tells you your diagnosis and treatment plan, you may want to get  another doctor's advice before you begin treatment. This is known as getting a second opinion. You can do this by asking another oncologist to review all of the medical records and materials related to your case. A second opinion can confirm or suggest changes to your doctor's proposed treatment plan, provide reassurance that you have explored all of your options, and help answer any questions you may have. Getting a second opinion is done frequently, and most doctors welcome another doctor's views. Second opinions can be requested for diagnosis, review of pathology slides, mammograms and other x-rays, and treatment plans.

There are hundreds of resources to use when searching for information about cancer. While some are excellent, others are inaccurate and/or incomplete. Information can be confusing, and searching for information overwhelming. Some people want to know a lot about their illness and others want to know little. We suggest that you start with some selected resources to help you find high quality and credible information.

Clinical trials
Clinical trials are research studies that seek answers to scientific questions. They are used to find improved methods to prevent, screen, diagnose or treat a disease. Participation in a clinical trial is totally voluntary. If you are interested in participating in a clinical trial, ask your doctor if one is available to you and what is required. You may also find clinical trial information in the resource section.

Medical interpreter
If English is not your primary language and you want a medical interpreter, be sure to inform your doctor or other health care staff. They will help you get the assistance you need.

Advocacy
A diagnosis of cancer can be very scary and remembering everything can be a challenge. Consider taking someone with you to your appointments to help you remember what was said. Identify a family member or friend to be your advocate, someone who can interact with the health care system and reduce some of the stress for you. Or, you may want to take a tape recorder to help you remember. Not all doctors are comfortable with this, so ask permission before doing so. 

Communicating with your health care team
Your health care "team" may be located in several different places and departments. Depending on your treatment, you may be working with many different people -- medical oncologists, surgeons, radiologists, pathologists, nurses, social workers, nutritionists, clinic receptionists, and more. You will need good communication skills and patience.

To prepare for your doctor visits, write down your questions. Take them with you to your appointments.  Put them in order of importance and ask the most important ones first.  You might not get through the whole list, but you will get the most important ones answered. Be respectful of your doctor's time but still make sure your needs are met. Write down the answers you get, and make sure you understand what you are hearing.

Do not be afraid to ask your questions or ask where you can find more information about what you are discussing. Being well-informed is an important task.

If you are not comfortable talking with your doctor or do not get along well with your doctor, tell your doctor this. If necessary, you may want to change doctors. Medical care is a partnership between patient and physician. Trust and communication are important. 

Medications, herbs and non-prescription drugs
Make a list of all the medicines you are taking. This includes medicines your doctor(s) has prescribed as well as non-prescription drugs such as aspirin, ibuprofen, other pain medicines, cough medicines, cold relievers and herbal supplements you are taking, even if they are not related to your cancer diagnosis. Drug/chemical interactions may need to be addressed since some medicines do not work well with other medicines and some can be harmful when taken together. Your doctor needs to know what you are taking, so bring this list to your doctor so the two of you can discuss them. 

Managing medical information   
Information resources are abundant and managing all of the paperwork can be overwhelming. Many individuals use 3-ring binders or file folders. A short Patient Primer is available for newly diagnosed individuals to help organize basics such as your diagnosis, doctors' names and phone numbers, medications, side effects, and so on. If you would like to receive a copy, please let us know.

Friends and caregivers: Some ideas and suggestions about what you can do
Many people want to help their friend or relative who has cancer but do not know how to approach them or how to help. 

Some suggestions:

• When you do not know what to say to your friend who has cancer, acknowledge it to yourself and to her. Sometimes it is helpful to say, "I don't know what to say or do. I wish I knew how to help."
• Cancer creates individual journeys. Patients have limited energy. Do not take it personally. Give them time to cocoon with their family.
• Be cautious about imposing your own ideas.
• Recognize that the patient's energy dissipates easily.
• Beeper Buddies - these are friends on whom a patient can call if he/she needs assistance.  Consider assigning days to be "on call."
• Patients are overwhelmed by the number and kinds of decisions that need to be made.  Sometimes the well-meant question, "what can I do to help?" is just too much. If you want to help, ask the patient closed-ended questions such as, "I'd like to take care of your children this week. Monday or Thursday works best for me. Which of these days is good for you?" Or, "I'd like to bring over dinner tomorrow. Would you like spaghetti or tuna casserole?" Questions with limited answers are easier for patients/families to answer when they are drowning in decisions. 

For more suggestions and observations about living with cancer, read When Breast Cancer Hits Home: A collection of observations and suggestions for families who live with breast cancer.   (While this booklet focuses on breast cancer, many of the issues are the same for other cancers.)

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