When you’re first diagnosed, you may not even know what questions to ask. And the answer to one question often leads to many more questions about things you may not have considered before.
It’s hard to take in a lot of new information when you feel anxious. It’s normal to need information to be clarified and repeated often during this time. Don’t hesitate to say, “You may have answered this before, but I need you to tell me again about _______.”
You may find that while the doctor is addressing one important concern, you forget to ask about another. Here are a few suggestions to help you avoid confusion and get the most out of your consultation:
+ Bring a list of your questions.
Write down your questions as they occur to you. You might forget them over time, especially if there are several weeks between your doctor’s appointments. Before your appointment, organize the questions into categories so that you can ask about one subject at a time. You may find that the answer to one question answers the other questions in that category.
+ Jot down new information.
Write down just the essentials in an abbreviated way. Don’t try to write everything down, because then you’ll be too busy to fully hear or relate to the answers. You may need to write down the name of a consulting doctor (such as a surgeon or radiologist), the names of medications, the number of treatments recommended, how to reach the nutritionist, and so on. Some people bring a tape recorder to visits where they’ll be discussing treatment decisions or getting a lot of new information. You can ask if it’s okay to record the session.
+ Repeat what you heard to be sure that you understand.
You can eliminate so much confusion (and worry) if you clarify what you’ve heard. You may need some things repeated or redefined so that they’re clear to you. Then repeat them again in your own words.
+ Report all your symptoms (even if you think some of them aren’t directly related to your treatments).
Let the doctor determine which symptoms are relevant. It’s important to tell your doctor about your skin condition, headaches, dental problems, fatigue, pain, cough, constipation, problems sleeping, or depression. Many people don’t want to “bother” the doctor with what seems to be an irrelevant problem, but since your whole body is experiencing treatment, everything is relevant. Some symptoms may be caused by your medications or surgery. Others may indicate an infection that needs to be resolved before treatment can start. Some problems may require a referral to a specialist or to your primary care doctor. Don’t try to sort it out yourself; let your oncologist know what’s happening.
+ Bring someone with you to help you remember, ask questions, or take notes.
There are many reasons why you could benefit from having someone you trust with you for visits to discuss your treatment plan. You may be anxious, you may not feel well, or you may be fatigued or overwhelmed. Make sure you choose someone who’s not so overwhelmed with her own anxiety about your diagnosis or treatment that she would distract you or the doctor from focusing on your needs during the visit. That person (spouse, friend, or family member) could act as note taker so that you can concentrate on listening and asking your questions. If you’re not effective in explaining the severity or difficulty of a problem, the other person can speak up. After your visit, that person can help you review the visit accurately, since she was there.
+ Create a system for organizing all the information.
People are handing you lots of paper. You should trash some of it, but you’ll need to keep some of it. At the end of the day, you’ll find that you have lab reports, scan results, phone numbers, lists of questions, insurance forms, drug information, “self-care” handouts, a receipt from the parking garage, and so on. Setting up a filing system for important papers will lower your stress level.
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Excerpt from: THE CHEMOTHERAPY SURVIVAL GUIDE, THIRD EDITION: Everything You Need to Know to Get Through Treatment (New Harbinger Publications)
Judith McKay, RN, OCN, received her degrees from California State University, Hayward, and has been an oncology nurse for more than twenty years. She works at the Alta Bates Comprehensive Cancer Center in Berkeley, CA. McKay is coauthor of When Anger Hurts: Quieting the Storm Within and contributed to the best-seller Self-Esteem.
Tamera Schacher, RN, OCN, MSN, is an oncology-certified nurse and a board-certified family nurse practitioner. For the past five years, she has worked at the Alta Bates Summit Comprehensive Cancer Center.