Blog

July 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Patients who live with a chronic disease such as Neuroendocrine Cancer frequently remark that managing our disease is just as much work as a full time job. We agree whole heartedly! It is work; It takes a lot of effort and concentration which is often in short supply. 

Having a good rapport and healthy conversations with your  physicians is a basic goal for living well with a rare disease. Our doctors know this and value good communication, also. Talking about cancer and hearing about YOUR cancer can be difficult. We need to be fully engaged with our medical teams as we navigate this shared responsibility.

Developing a good rapport starts with a few basic steps on the patient’s part.

1) CREATE A COMFORTABLE ENVIRONMENT FOR CONVERSATION BY ARRIVING ON TIME FOR YOUR APPOINTMENTS WITH THE PROPER PAPERWORK COMPLETED IN ADVANCE.

One recommendation to minimize miscommunication is to have a designated notebook and calendar that accompanies you to every single appointment. If you store your medical information and  scheduling on a device, be confident and competent in your ability to recall the data you need in moments, not minutes.

2) WRITE DOWN ANY QUESTIONS IN ADVANCE, AT HOME, AND PRIORITIZE THE FIVE MOST IMPORTANT.
These are the concerns you bring to your doctor’s attention first, for your peace of mind. If you and your physician are unable to discuss these top five items, ask how you can get answers prior to your next appointment. Can you schedule an office visit whose sole intent is to continue this conversation? Are these topics that can be discussed and answered by his physician’s assistant or nurse practitioner? Is the Patient Portal an adequate means of continuing the conversation?

3) BE HONEST WITH YOURSELF AND YOUR PHYSICIAN, ALWAYS. 
It is our responsibility to present an accurate picture of our current status in daily life. Bring a written record of missed medications, daily anomalies, shortness of breath, etc. Do not be embarrassed to discuss the physical malfunctions of your digestive system. You need to fess up to your doctor if you do not take your medications as directed or cheat on your daily food recommendations. Your doctor can not do his/her best job for you unless he is aware of all the facts.

4) PLAN TO TAKE NOTES OR ASK PERMISSION TO RECORD YOUR CONVERSATIONS WITH YOUR CELL PHONE.
Let’s face it, some of us have trouble remembering what we ate for breakfast! Add a little “white coat” anxiety to the situation and recalling what was said at a doctor’s appointment, after the fact, can be a real challenge. Also, sometimes it hard to listen and absorb information while taking notes. Recording the visit (with permission) or bringing a friend/advocate to take notes for you can be helpful, too.

TEN FAST TRACK TIPS FOR ROUTINE APPOINTMENTS
1) Arrive on time, unrushed, and prepared.
2) Dress comfortably for your labs or procedures.
3) Arrive fed (or not, depending upon lab instructions).
4) Plan for and anticipate delays.
5) Prioritize your 5 most important concerns and bring Rx renewal needs with you.
6) Symptom changes to discuss with your physician: joint, bladder, or bowel pains; shortness of breath, sleeping difficulty, headaches or vision changes, changes in your medications, mental health, and physical inabilities.
7) Stay focused and be truthful with yourself and your doctor.
8) Try to voice your concerns and feelings in a positive way.
9) Repeat instructions back to your doctor and take notes as needed.
10) Ask for clarification, additional literature or an additional appointment for a more in-depth discussion and understanding of any new issues.

Lastly, listen to your physician with the intent to understand and to stay focused on your health concerns. Your 15 minutes is precious to you and to your doctor. And if  you need any support before or after  your doctor visits we  are HERE for you.