It is not unusual to find you have questions or concerns popping up in your head after you leave appointments with your health care providers. You may have received new information during an appointment, and you are still trying to wrap your mind around what you were told. The questions are just starting to formulate. Or, you may have had some questions or concerns to discuss but the appointment took on a life of its own and there was not time to bring up what you wanted to talk about. Sometimes you may feel your Care Team members don’t have time to discuss your questions or concerns. It is essential that you get your questions addressed and feel confident that your Care Team is responsive. Below are some tips to help improve your communication with your Care Team.
- Call and talk with one of our Lifeline Specialists Our specialists are trained to help you come up with a plan for talking with your Care-Team. A specialist can help you process what you are dealing with and strategize on how to begin the conversation.
- Keep a notebook/folder Get a spiral notebook and put it inside of a 3-ring binder or folder with pockets. This will help you keep all the information related to your cancer treatment in one place. Use the notebook to jot down questions you want to be sure to ask, any new information you receive, follow-up calls or appointments you need to make, new members of your team, etc. The pockets in the folder are great places to put the handouts, brochures, or other paperwork you receive at your appointments.
- Consider doing some research This is a personal decision and not for everyone. Some of us are completely satisfied with the information we receive from our health care team at appointments and do not feel the need for additional information. Others like having as much information as possible and feel empowered knowing all they can about their cancer and treatment. For example, learning the ‘medical jargon’, current treatment and potential side-effects of treatments can help in understanding more clearly what your health care team is sharing with you and may help you know what questions to ask and how to ask them. If you do decide to do some research, you can access information from sites such as The National Cancer Institute or The American Cancer Society. As you browse these sites, be clear about what you want to know and what you do NOT want to know. Most likely you are looking for information that will help you work with your Care Team in planning your treatment. So, ask yourself, ‘will it be helpful to me to know right now what the current thinking is on prognosis?’
- Make a list of questions Get out that notebook and start jotting down the questions you want to ask at your next appointment. Keep your notebook handy, you never know when a question is going to surface in your mind.
- Plan for appointments Take your notebook, list of questions, & ask your most important questions first. Write down the answers you receive. If possible, TAKE SOMEONE WITH YOU to your appointments. This can include tele-health as well. It is always a good idea to have an extra set of ears and someone to remind you of questions you may have forgotten to ask. Do not hesitate to say “I DO NOT UNDERSTAND” if something your doctor says is not clear to you. Ask if you can record the visit so you can review the information you received. Remember, we generally only hear a fraction of what is said to us when we are under stress.
Follow-up Review the information you received and if you find you have additional questions, call or email. Many health systems now have a patient portal where you can email to help avoid playing phone-tag, waiting for a call-back or your next appointment. You should feel empowered to be your own advocate.
If you would like assistance preparing for conversations with your Care Team, call the Lifeline at (800) 255-5505 or (206) 297-2500 (M-F-9am-5pm PST.)
Cancer Lifeline Programs, Classes, Support Groups, and other services can be accessed by going to the Cancer Lifeline website cancerlifeline.org or calling the Lifeline (800) 255-5505 or (206) 297-2500 Monday through Friday, 9am-5pm.