Alright, let’s kick this off by acknowledging how ridiculously fortunate I am to call Raleigh home. We’ve got some of the best oncologists and surgeons in the country right here. Plus, my insurance allowed me access to treatments from both UNC Health and Duke. Not everyone gets to choose between these two outstanding teams, but if you do, I hope my experience might help you out.
When I first got the Big C diagnosis, my orthopedic doc sent me straight to Rex Oncology. Everything happened at warp speed, so I didn’t even have a moment to ponder the possibility of getting a second opinion. It wasn’t until my first surgeon at Rex referred me to Dr. S at UNC Chapel Hill that I realized I had options. Here’s what made me stick with the Rex team initially:
Initial Contact: The team at Rex—Care Navigators, Schedulers, Oncology Nurses—were total sweethearts. They explained everything with saint-like patience and gave me all the hugs (shoutout to Jan, Katie & Holly) when the tears inevitably came. They hustled to get my appointments set up and were on call 24/7, basically my emotional support squad.
Care Team Collaboration: When my case turned out to be too tricky for the Rex surgeon, I was referred to Dr. S at UNC Chapel Hill. Even though I hadn’t met Dr. S yet, she and her team had already met with my original surgeon, oncologist, and radiation oncologist. Knowing these brainiacs were collaborating across hospital lines to give me top-notch care was super comforting. Dr. S even gave me the choice of doing my radiation and chemo at Rex or UNC. Rex being a mere 3-minute drive from my house vs. a 45-minute trek to Chapel Hill? No contest.
Gut Instinct: I’m all about vibes, and my oncologist, Dr. B, passed the vibe check with flying colors. He was warm but serious, and a quick internet stalk confirmed he was legit. Same went for Dr. F, my radiation oncologist.
Did I do exhaustive research on my doctors? Nah. But my gut said they were solid, and with the urgency to start treatment, I rolled with it and stuck with Rex for radiation and chemo.
After my month-long stay at the Rex-Carlton, my family and I started to have more questions about the treatment plan. We decided to get a second opinion. Before I was diagnosed with DPD deficiency, the plan was to complete 8 rounds of chemo with 5-fluorouracil (5-FU). But since my body couldn’t metabolize 5-FU properly, we needed a new plan.
DPD deficiency is rare, so there wasn’t a clear-cut treatment protocol. We had to avoid under-treating and leaving cancer cells behind, but we also couldn’t go with the standard dose. The plan was to start with 50% of the infusion dose and play “guess and check.” Not exactly confidence-boosting, but my docs were doing the best they could with the info they had. Knowing I was only the second DPD deficient patient my oncologist had treated, I went for a second opinion.
Even though Dr. B was supportive of getting a second opinion, it still felt awkward. A family friend recommended a world-renowned oncologist at Duke, and I scored an appointment within a week and a half. My sister, Stephany, came with me, armed with a laundry list of questions. The Duke doc had reviewed my records and took the time to ask how I was feeling in every sense of the word. We had a great chat, and he recommended the exact same treatment plan as Dr. B. That gave me a lot of reassurance.
I’m super grateful for the care I received. If I could go back, I’d make the same decision regarding my care team but with a few tweaks:
- Research oncologists in my area/insurance network.
- Understand common treatment plans better.
- Look into treatment plans outside the US. There’s more research on DPD deficiency in the UK.
- Trust my gut—if you don’t vibe with your doctors, find someone else. I was lucky to gel with my whole team, except for one PA.
So, there you have it. Get that second opinion, trust your vibes, and may your journey be as smooth as possible. And remember, if your gut tells you something’s off, listen. You’re putting your life in these doctors’ hands.