If you are reading this, chances are you or someone you love is facing appendix cancer. And if you are anything like I was in the beginning, you are trying to understand what is real, what is possible, and what decisions actually mean for your life.
I want to talk honestly about surgery in advanced high-grade appendix cancer, because there is a lot of information out there right now that can sound more hopeful than it really is. Patients deserve the full picture.
When David was diagnosed, we were told something that has stayed with me ever since. We were one of the rarest of the rare. Dr. Sardi, who performed David’s right hemicolectomy, told us he sees maybe one or two goblet cell cases a year. Even the most experienced surgeons in the country do not see many of us. That matters more than people realize, because it means there are no large, definitive studies guiding every decision. Outcomes vary widely. A lot of what we hear is built on small patient cohorts and individual clinical experience.
So when we talk about surgery, we need to talk about it clearly.
Surgery can extend life, sometimes for years, good and active years, time that genuinely matters. But for most patients with advanced High-Grade appendix cancer, surgery does not always stop recurrence. That is the part that often gets lost. It is not a cure for most stage IV patients with aggressive High-Grade disease. It is a tool. For some, that tool gives them time they would not have had otherwise. For others, the benefit is shorter, or the road afterward is harder than they expected. Those are different outcomes of the same disease, and none of them is the wrong answer.
Memorial Sloan Kettering: “High-Grade Appendix Cancer disease is complex. Most patients with stage 4 disease do eventually recur, but a proportion can have extremely long remissions to where it doesn’t impact their lifespan. I’ve had some patients with higher grade disease surprise me with doing much better than anticipated after a surgery – a randomized study would be needed. In our ICARUS study which did include PD patients about 60% recurred by 1 year, but 25%+ were still without recurrence at 2-3 years so there is a proportion that might benefit.”
“I’ve had some tough reports of patients I’ve seen going to Surgery and then having a fast recurrence with all the side effects of surgery too.”
Mercy Hospital: “When ‘Too Advanced’ Isn’t the End: New Findings on Appendix Cancer Treatment. Don’t let “too advanced” be the final word on your health journey!“
A groundbreaking study featured by the Abdominal Cancer Alliance reveals that many patients with advanced appendix cancer – once told their condition was untreatable – found new hope and successful outcomes through specialized second opinions.
Research shows that expert surgical intervention, like CRS-HIPEC, can significantly extend life, even when initial diagnoses seem dire.Remember that seeking a specialist’s perspective isn’t just an option; it’s a vital step to access the most innovative treatments available.
Your path to healing might be just one more conversation away!”
You may hear very different opinions depending on where you seek care. This has been a topic of controversy in the past year – especially as it relates to CRS and HIPEC. Some surgeons will push further. Some centers will be more cautious. That is not because one is right and one is wrong. It is because this disease behaves differently in every person and the most important question is whether all visible cancer can actually be removed. The question is not just whether you can have surgery. The question is what surgery is likely to do for you, what your life looks like on the other side, what you are hoping for and what you are willing to go through to get there. Those are hard conversations. They are also the ones that matter most.
When looking at studies about the results of treatments and surgery, always make sure you understand the type of Cancer that was treated AND out of those patients, how many of them got a complete cytoreduction. Without that information studies do not tell you what you need to know.
Hope is still here. It just may not look like what we imagined. Sometimes it is more time. Sometimes it is better time. Sometimes it is simply making the most informed decision you can with what you know.
For us, David was fortunate. His tumor was large enough that it pushed through to the colon and was caught during a routine colonoscopy. If that had not happened, we may not have found it when we did. We live with that awareness every day and with the knowledge that this cancer can come back. That is part of our reality now. I know many of you are living inside the same uncertainty.
So if you take anything from this: ask the hard questions. Understand what surgery can and cannot do. Think about your life, not just your timeline. And make the decision that feels right for you.
My next post “Appendix Cancer and Surgical Decisions: How AI May Help Guide the Hardest Choice” will be the first in a series called “A Clearer Path: AI in Appendix Cancer.” I think you will find it worth reading.
You are not navigating this alone.
Amanda
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