Whether it’s your first cancer appointment or one of a series, making sure you understand everything you’re being told — from diagnosis to treatment plan — is critical.
But that’s easier said than done. You may feel mentally or emotionally overwhelmed by the information you’re being given or not physically able to pay close attention. To make the process easier for you, we’ve gathered some tips and techniques for you to try.
Remember, the more informed you are, the less stressful it will be for you and the better it will be for everyone involved in your care. At Sarah Cannon, nurse navigators, who specialize in your type of cancer, will help you make sense of all of the information; but it is still helpful to take notes during each appointment.
Taking Notes During Cancer Appointments
Keep an ongoing list of questions. From the very first question — What does my diagnosis mean? — to others dealing with treatment options, side effects and clinical trials, your need for answers will continue throughout your cancer journey. Writing them down as they occur to you will help keep you informed and better prepared. (See: Questions to Ask Your Doctor About Cancer.) Then when you’re scheduling your appointment, request additional time to discuss these questions, either with your physician, the physician’s assistant or your nurse navigator.
Don’t rely on your memory. Even under the best of circumstances, memory can be a less than reliable resource. Add in the stress of illness and the unfamiliarity of the terms you’re hearing, and your ability to correctly recall information can be severely impaired. Instead, find a way that works best for you to keep track of what you’re being told: a tape recorder or note pad, or if you’re more tech-oriented, an iPad or other electronic tablet or mobile device. Whatever tool you use, don’t be afraid to ask your healthcare providers to repeat the information if you don’t understand what you’re hearing.
Bring a designated note-taker. When it comes to doctor visits, two sets of ears are better than one. Having a friend or family member at the appointment allows you to focus on what the doctor is telling you while they play the role of stenographer. Another benefit of including another person during your appointments is that he or she can also update other family members or friends.
Review any instructions or changes in medication before you leave. This ensures that you take home the most accurate information, and it also gives you the opportunity to ask any additional questions. For example, do you take the medication four times a day — breakfast, lunch, dinner and bedtime — or every six hours? Are there side effects to the treatment that would warrant a call to the office? This is also a good time to ask for copies of any lab results or other tests to add to your file.
Organize your notes and records and keep them accessible. Ideally, everyone involved in your care will be up-to-date on your treatments, medication and overall status. But that’s not always the case. Having your information in one location will make it easier to access in case of emergency or for visits to other healthcare providers. Using individual file folders or a three-ring binder with paperwork sorted by category (medication list, lab results, imaging studies) can allow for a quick review and copying by your physician. Add contact information for all the doctors involved in your care so the lines of communication are kept open. Sarah Cannon nurse navigators will provide patients with handbooks equipped with tools to help keep information about their cancer treatment, medications, and appointment schedules organized.
“Many patients feel anxious or overwhelmed during their visits with physicians, which can affect their ability to retain important information,” said Priscilla “Gigi” Smith, RN, Oncology Nurse Navigator-Lung at HCA North Texas/Sarah Cannon. “I recommend that my patients take along a support person who can take detailed notes for them so they can stay engaged with their physician during the visit.”
Sarah Cannon — Questions to Ask Your Doctor
American Cancer Society — Remembering What Your Doctor Says; Questions to Ask Your Doctor When You Have Cancer
Caring.com — Questions to Ask the Oncologist About a Cancer Diagnosis
FamilyDoctor.org — Tips for Talking to Your Doctor; Cancer Treatment
National Cancer Institute — Questions to Ask Your Doctor