Preparing for My Doctor Appointments: It’s All About Advocacy

Here’s is my list of the seven things that make my doctor visits efficient, educational and time well-spent:

A: I am aware of my blood test results and what they might mean.
D: I read about new diagnostic tests that might make me eligible for new genomic tests and/or treatments and make this part of the discussion.
V: I share my vision for my wellness with my doctor.
O: I open myself up to hear about new ideas or suggestions from my doctor.
C: I create a list of questions and concerns.
A: I ask questions about next steps.
T: I tell the doctor what I want.
E: I stay educated and updated on my specific cancer.

Diagnosed in April 2018, my visits to my medical oncologist are monthly. My doctor who is “beyond excellent” is my second oncologist and I have been seeing her since November 2018. My first oncologist was not the best doctor for me, so I made the change and I am so happy I did. Make certain you like and trust your doctor. Make certain he or she is a good listener to your needs and ideas.

What do I do before every visit?

Most oncologists have you do blood work the day of your appointment prior to meeting with the doctor. For me, this never worked. I get my blood work done a week prior to my visit. Via an online patient portal, I can access my test results before my next appointment. These results are recorded on a simple spreadsheet that I created and when the results come in, I add a column and compare results.

The monthly blood tests include:

• CBC (Complete Blood Count)
• Comprehensive Metabolic Panel
• Tumor Marker CA27.20
• Tumor Marker CA15-3

How do I prepare to meet with my doctor?

After reviewing my blood tests results, I update and print my spreadsheets with test results. The results that are abnormal are highlighted. For me the results I am most interested in are:

• Alkaline Phosphates (indicator for bone and liver)
• Liver enzymes (ALT and ALP)
• White Blood cells
• Tumor markers

Oncologist appointments

Our visits open with a “How are you doing?” Most times, my husband joins me for these appointments. He just listens but bringing him with me is another set of ears to hear what I might miss. Then our discussion begins with the blood work results. My doctor does not solely focus on the numbers and I don't either but the numbers can make you knowledgeable about what the next steps might be. Over the years I have read a great deal about these tests. If they go up and I know what they mean. It is important for me to be educated and have a clear vision for myself and what I think is next for me.

Being an advocate

I recommend making your life about staying informed and make the subject YOU and your body. Find out what will benefit your health. Bring your thoughts and ideas to your physician. Be organized and if you are not up to it, find someone who can assist you to make a list of items to discuss and who will be your advocate.

When I was first diagnosed, I really hated going to my doctor. Today, I go with hope in my pocket and am very prepared to have a great discussion about what is best for me.

Stay Amazed.

Editor’s Note: We are extremely saddened to say that on November 5, 2019, Linda passed away. Linda’s advocacy efforts and writing continue to reach many. She will be deeply missed.