Meeting Dr Hwang: Preparing for the next diagnostic steps

The time had come to get more information about what was going on in my body, and I felt a mix of anxiety and hope as we arrived at the hospital. This appointment could provide the clarity I desperately needed. We arrived around 8:30 AM for a 9 AM appointment, so we grabbed some food and drinks from the café before heading upstairs.

Dr Hwang went through all the tests I had and what they meant. Hearing that the tumour was likely one of two types—neuroendocrine tumour or adenocarcinoma—sent a wave of dread through me. The chance of it being nothing was extremely low, and I felt the weight of that reality settle heavily on my shoulders. The neuroendocrine tumour would need a PET DOTATATE scan to confirm, while the adenocarcinoma would require a biopsy. Each path held its own set of uncertainties and challenges, and I couldn’t help but feel overwhelmed by the decisions ahead.

After spending quite a bit of time discussing the options and the processes we would undertake, we scheduled the following week for a biopsy. Dr Hwang reassured us that whatever it turned out to be, it was treatable. Treatment could vary from monitoring the situation to surgery, but he did mention that the tumour was very close to the bile duct, making any surgery quite complicated.

The Wesley Hospital in Brisbane, where I saw the specialist, had an I-MED radiology on-site. After our appointment, we visited them to book in for a PET DOTATATE scan. Initially, there were no appointments available until the following Tuesday. Ros, always my advocate, sweet-talked them, her kindness and determination shining through as she explained our circumstances. Thanks to her persistence, we managed to secure an appointment for later that same day.

Off home we went, to spend a few hours away from the hospital before we needed to return. We were back around 2:45 PM for the 3 PM appointment.

The PET scan was a new experience for me, one I knew nothing about at the time. As I was ushered into the room for the scan, I felt a mix of curiosity and apprehension. I had never undergone a PET scan before, and I had no idea what to expect. When the IV was inserted and I was injected with radioactive material, I couldn't help but feel a sense of vulnerability. I knew this was necessary for getting answers, but the experience was surreal. The radioactive material would circulate through my system for about 45 minutes to an hour before the actual scan took place. I even managed to have a little nap in the room while waiting.

The scan was very straightforward. I had to lie down on a bed while a machine did its thing around me. The process lasted about 30 minutes, with my body going in and out of the scanner. Afterward, I needed to wait around for 15 minutes for them to verify the images were fine before being allowed to leave. I was radioactive for about an hour following the scan, so I had to be careful of who I was around.

After a very long day at the hospital, we arrived home around 6:30 PM, exhausted but relieved to be back in our own space. We ordered takeaway for dinner, neither of us feeling up to cooking. What a day it had been - one filled with uncertainty, yet also a glimmer of hope for the answers to come.