What Did The Doctor Just Say?
By Les Friedman, Mikey’s dad
When the doctor speaks with you about your child’s diagnosis, you might hear what he’s saying, but hearing isn’t the same as understanding. This happens not only because it’s difficult to process information after receiving overwhelming news, but also because childhood cancer has its own complex vocabulary of medical terms and acronyms. Lots of new information coupled with a lot of emotion makes it difficult to process what you were just told. As a result, you may find yourself wondering, “What did the doctor just say?”
Words can have a different meaning to your doctor
Sometimes even words that you believe you know can often mean something entirely different to a doctor. For example, think about the word fever. Your child’s temperature is 99.5 degrees, which you believe is a fever. As a result, you call the doctor and tell him that your child has a fever of 99.5 degrees. But the doctor says, “That’s not a fever” because to him, a fever is over 100.4 degrees. But to you, a fever is anything over 98.6. You’re both using the same word, but the meaning is different for each of you.
If what you’re hearing doesn’t make sense, make sure to ask questions
If there is something that you don’t understand, don’t hesitate to speak up! Doctors want to avoid misunderstandings – so let them know when something isn’t clear. With this in mind, here are some ideas to help you become better at talking with your child’s doctor.
- If the doctor is not explaining things well, ask him to explain things in simpler terms or repeat what he just told you. Then restate what you think you heard and ask the doctor if you’re understanding correctly.
- In the event that you can’t visualize what the doctor is telling you, ask him to draw a picture.
- If you don’t understand a term ask the doctor to write it down for you.
- Ask for pamphlets or written material at the beginning of your appointment so that you can make notes on them during the visit. You can add your own explanations that make more sense to you.
- In the event that a doctor or healthcare professional uses an acronym (letters that stand for a phrase, like EEG, or CPR), ask, “What do those letters stand for, and what does that term mean?”
- Take notes or ask a family member or friend to take notes for you. Even if you understand in the moment, having your notes to refer back to, in terms you understand, may be very helpful later.
- Make a list of questions before your appointment. Don’t leave until your questions are answered in a way that is clear to you.
Online resources to help understand medical terms and diagnoses
Childhood cancer has its own complex vocabulary and it can often feel like your child’s doctor is speaking gibberish. For this reason, we’ve listed some useful resources that will help you better understand some of the medical terminology.
Children’s Oncology Group has an excellent glossary, Family Handbook which explains the terms that you are likely to come across throughout the various stages of cancer. MedlinePlus from the U.S. National Library of Medicine and the National Institute of Health offers an online interactive tutorial, Understanding Medical Words, which offers tips to help you figure out on your own what medical terms mean. And the National Cancer Institute Dictionary of Cancer Terms features 8,525 terms related to cancer and medicine.
Make sure you are looking at reliable sources
If you’ve done any online research, you’ve probably noticed that there’s no shortage of online health information. But how do you know which ones are worthwhile? MedlinePlus’s Guide to Healthy Web Surfing explains what you should look for when evaluating the quality of health information on Web sites.
Visit our blog post, “Just Google It – the Internet is it Friend or Foe” for other reliable research resources.
Through it all, keep in mind that you are your child’s best advocate. Learn as much as you can from reliable sources and ask questions when you have them, so you can move forward in your child’s treatment with confidence.