Individuals going through cancer and cancer related treatment know how anxiety provoking doctor visits can feel. Often times the visits can seem overwhelming and confusing. After all, you are most likely getting exposed to a whole new language. Words and phrases like "metastases", "immunotherapy", "lymph node dissection", "hormonal therapy" were not in most peoples daily vocabulary prior to their diagnosis.
All of the new terminology, plus the common "white coat syndrome" experience, can prevent people from taking full advantage of the valuable, and often limited amount of time they have with their medical provider.Your visits should be opportunities for communication and collaboration between you and your healthcare provider. Being an informed consumer of your healthcare is a key component of the informed consent process as you decide upon a treatment plan. To help you take an active role during your next Hematology, Oncology, or Urology visit, feel free to give these suggestions and recommendations a try.
Prepare a list of questions in advanced:
I recommend getting a notebook where you and your family members can generate a list of questions to bring up with the Doctor. As you go through the visit, check off which questions have been addressed and make sure there is time at the end of your visit to go over the remaining ones.
- Take notes:
Using the same notebook, you or whoever is accompanying you should write down any key information (e.g., dates, medications, names, etc.) from the visit.
- Bring someone along, or put them on speakerphone:
While it's usually a good idea to have a second set of ears by your side, sometimes caregivers have other obligations that prevent them from making it to the clinic. One option is to call a friend or family member and put them on speakerphone during the visit. While I have never heard of this being a problem with a doctor, it's a good idea to check in with him or her first before you dial.
- Ask about Decision Aids:
When faced with different treatment options (e.g., surgery, radiation, chemotherapy), ask if there are any resources or Decision Aids to help you make an informed decision. Examples include resources specific to your treatment facility such as classes or support groups, as well as online programs and information that are available to all patients facing similar treatment decisions.
- Review and Summarize:
Before your appointment ends, try your best to repeat back what you just learned from the visit. For example, "So to confirm, my scans showed a positive response after surgery and now you would like me to get my blood drawn at 11:00AM, and if my white blood cell count is okay, I'll start a new chemotherapy agent called Taxol, which will take 4-hours...is that correct?"
My hope is that by taking these 5 steps you will feel more prepared and less anxious during your future medical visits. If you are someone who struggles with anxiety in these contexts, I encourage you to engage in some self-monitoring of your internal experience. Beware of the tendency to cognitively and emotionally check-out or shut-down. While it may feel easier to not ask questions, nod in agreement, and say you understand something complicated that you don't, you will likely leave the visit feeling more confused than before. Please do not feel embarrassed to ask for clarification. As someone who has worked closely alongside Oncologists and Hematologists, I'll let you in on a little secret: physicians and healthcare providers are students for life. We don't have all of the answers so we wouldn't expect you to!