I look fine, but there’s more than meets the eye
I look fine, I feel fine. That's how I would describe things at the moment. But beneath the surface, there’s something inside of me that doesn’t belong. The last 6 weeks have been a rollercoaster - from diagnosis to consultations, each step feels surreal. Three weeks ago, I was diagnosed with pancreatic cancer (a pancreatic neuroendocrine tumour). Thankfully, it’s a very slow-growing tumour and hasn’t yet spread, but hearing those words still hits hard.
I had a consult with the surgeon , Dr David Cavallucci, today to talk through options. Luckily, it’s not something I need to decide on immediately, but the complexity of the situation is clear. I explained my history - low iron, but nothing else of note - and how my iron levels had returned to normal shortly after they detected the tumour.
Our biggest question for Dr Cavallucci was simple: when can we get it out? His response was more complex: when is the right time to get it out, should we get it out, or do we need to? He explained where the tumour sits in relation to the pancreas and its associated plumbing - something I hadn’t thought much about before. The tumour’s location - tucked behind the pancreas’ delicate plumbing - adds a layer of complexity to any decision. Surgery is risky, especially given my age, but waiting brings its own uncertainties.
Facing a Neuroendocrine Tumour: Weighing Risks, Options, and Timing
When I first learned about my neuroendocrine tumour, the biggest question on my mind was: “What should I do about it? Act now or wait?” It’s not an easy decision to make, and every option comes with its own set of challenges and risks. Here’s what I’ve learned as I navigated this complex situation.
The Diagnosis and Its Challenges
The tumour is about 15-16mm in size and was confirmed as a neuroendocrine tumour through a biopsy. It’s low-grade, meaning less than 1% of its cells are active, so the chances of it growing rapidly or spreading are low right now. Most of these types of tumours stay small - under 2 cm - which keeps the risk of causing issues like blockage or spreading to other areas pretty low. But there’s a catch: it’s sitting in a tricky spot, right behind the pancreas’ plumbing, which makes it difficult to access if surgery is needed.
Balancing My Options: Active Surveillance or Surgery?
One option is active surveillance, where we’d keep a close eye on the tumour with scans every 6 to 12 months. This approach means I wouldn’t need surgery right away, avoiding the risks and recovery time that comes with it. But it also means living with the uncertainty of knowing the tumour is still there, and that’s tough. If the tumour grows beyond 2 cm or starts causing symptoms like jaundice, surgery will be needed.
The surgical path has two potential options: a less invasive “scoop out” procedure or a more involved Whipple’s procedure. The scoop-out option sounds great because it’s less invasive, but given the location, it might not be possible. And if it doesn’t work, I’d end up needing a Whipple’s procedure - a major surgery that comes with a long recovery and significant risks like leakage of digestive juices. But this would also provide a definitive solution.
Timing the Surgery: How Soon Should I Act?
Another critical part of this decision is timing. It’s about weighing the risks of doing surgery now against the possibility that the tumour could become harder to manage later. Right now, the tumour’s low grade means it isn’t likely to spread rapidly, but if it grows larger, the chance of needing a more complex surgery increases.
If I go the surgery route, I want to be in the best shape possible, which means losing a bit of weight to make the operation easier. I also have to consider the practical aspects - like whether to get it done before the holidays or wait until the New Year for a smoother recovery. With a year of sick leave available, I know I can take the time I need, but it's still a lot to think about.
Consulting with Specialists and Next Steps
Before making a decision, I'll need to consult with my specialists and get their opinions. We’re looking at detailed scans like MRIs and PET scans to get a clearer view of how the tumour is behaving and its proximity to vital structures. There’s even a chance I’ll need additional endoscopic procedures to ensure nothing else is being overlooked.
Ultimately, the decision is one we’ll make together - me, my doctors, and my family. Being in my 40s means there’s time to carefully consider the options, but I can’t put this off forever. Even if I choose to watch and wait for now, surgery will be on the table down the line and I may not be as healthy then.
Conclusion: A Decision Without a Clear Right Answer
Facing a neuroendocrine tumour has shown me that there’s no easy answer, just a process of weighing risks and finding a path that feels right for me. It’s about balancing the immediate risks of surgery with the long-term risks of waiting, all while trying to keep my life as normal as possible. No matter what I decide, I just want to feel confident that I’m doing what’s best for my future - one step at a time.