How to Make the Most of Your Oncology/Hematology Visit

It’s almost time for my visit with my oncologist/hematologist, who specializes in chronic myeloid leukemia. I’ve had this rare form of blood cancer for nearly six years.

When my counts are stable or good, these visits occur every three months. Last year, when my BCR/ABL numbers were traveling in the wrong direction, my visits became monthly.

I don’t know about you, but sometimes I get frustrated when I get home following a visit and realize that I forgot to ask something or say something that I planned to during the appointment. Blame it on chemo brain. But when I think about it, there are ways that I could have prepared better and had a more productive visit. These steps are referring to a pre-pandemic appointment. Some are even more important now because of the extra precautions taking place at the hospital.

Make your medical appointment the top task!

Give yourself extra time to get to the appointment. If that means getting up really early, so be it. Avoid getting sidetracked along the way thinking about stopping for coffee, running an errand, or filling up a tank of gas.

Make your medical appointment the top task of the day. For me, I travel about 30 minutes to a cancer center at a medical school. The center is located in a large city and traffic jams are common. Also, sometimes, parking is a problem and you can spend a lot of time driving around in circles inside the five-floor attached parking garage. I know people who have given up and driven home in frustration. I haven’t got to that point, but I have had some scary, out of breath moments, rushing up to the reception desk at the last minute, frazzled. Then, the “frazzle,” leads to an unsatisfactory appointment because I’m too busy huffing and puffing and complaining about the parking situation when I should be getting important points across.

Blood work is on one floor of the building and the doctor’s office is on the next. How I wish I had a photo of the long, never-ending stretch of hallway to walk/(or ride). Naturally, where I need to go is located at the far end, both times. Again, timing...

Jot down questions for your doctor

Before the appointment, jot down questions you want to be answered and issues you want to be clarified. Write down any side effects that you are experiencing or pain you are having either in-between visits or currently.

During the appointment is the time to bring up those questions on your handy list. What are my blood counts? Is there anything showing up abnormal, high, or low? What does that mean? What do I do about it?

I have a doctor who asks if I have questions and sits and listens when I have issues about my health to bring up.

• “I’m still getting weird rashes that come and go. Want to see a photo on my phone? Is that a side effect or part of leukemia?”
• “I went to urgent care last month because I was bit by a bug and my leg swelled up and got infected. My skin had red streaks. Here is what I did for it.”
• “Every time I take my TKI, I get nauseous afterward. Nothing is working to help. Do you have suggestions?”
• “I can’t sleep because the bone pain in my legs is getting worse. What should I do?”

Everyone has different experiences with side effects and overall health. Nine times out of 10, I am fortunate because I don’t have to bring up incidents like above.

Find a doctor that listens to you

Instead, the doctor walks in and says, “I see you went to urgent care on such and such a date for a bug bite. What happened? How are you now?" or “Are you still bothered with the rash you saw the dermatologist about?”

If you have a doctor that tells you TKIs don’t have side effects, something is “all in your mind,” or wants to make a mad dash out of the room before you’ve barely sat down, it’s probably time to find a better doctor.

Schedule your next appointment before you leave. Ask when to expect pending test results and by what method. Be an advocate for yourself and don’t ever let a medical professional downplay your symptoms, condescend to you, or leave you feeling like it was a wasted trip, not worth the time, effort, or gas.

It may seem like common sense, but we all need a reminder now and then. Remember: you’re the most important member of your healthcare team.