If you have been diagnosed with High-Grade Appendix Cancer, especially early stage disease, meaning stage II or stage III where the cancer has been surgically removed and has not widely spread, you have probably been told that your treatment should follow colon cancer guidelines. That usually means surgery followed by chemotherapy if certain “high risk” features are present.

Appendix Cancer finally has it’s own category and with that has come New Appendix Guidelines. I wrote about this a week or two ago. You can read it here: Redefined Care: New Appendix Cancer Guidelines It is going to take a while for the medical community to get the notice, so please share this with your medical team. Research facilities tend to help write these new guidelines, but everyone else doesn’t know until they are told.

I have written about this exact subject before, but what prompted me to write about it again is that people are still being recommended chemotherapy they may not need. Chemotherapy is not a small decision. It comes with its own set of risks and long term complications that patients deserve to weigh carefully.

There is now published data from earlier this year that helps explain why some patients may not benefit from chemotherapy after surgery.

The Decision David and I Faced

Before this study was published earlier this year, David and I were given an early look at the data. That ended up shaping one of the hardest decisions we have ever had to make….

Three different appendix cancer specialists told us the same thing. Do six months of FOLFOX. They told us there was basically a “fifty fifty chance the cancer would come back with or without the chemo”, and that they “treat it like colon cancer because they do not have anything better to offer.“

Then we met with Dr. Shen at MD Anderson.

He said he did not recommend chemotherapy and then he showed us data to support his recommendation. No one else had any supporting data.

Walking away from chemo felt terrifying. It went against what multiple experts were telling us. It felt like we were taking a risk we might regret forever.

Now that this study has been formally published, it helps explain why his recommendation was different.

What This Study Actually Looked At

This is one of the largest studies ever done looking specifically at early stage appendiceal adenocarcinoma.

Researchers looked at over 3,600 patients and focused on 439 patients with stage II and stage III disease who had surgery.

These are patients just like many of you. You get through surgery, and then you are asked to decide whether to go through months of chemotherapy without really knowing if it will help.

Not All Appendix Cancers Are the Same

One of the most important findings in this study is that appendix cancer is not one disease.

Here is how the tumor types broke down:

– Goblet cell tumors about 40 percent – Mucinous tumors about 30 percent – Enteric tumors about 27 percent – Signet ring tumors about 3 percent

Recurrence rates were very different depending on the type:

Goblet cell tumors about 2 percent
Mucinous tumors about 14.5 percent
Signet ring tumors about 16.7 percent
Enteric tumors (Neuroendocrine tumors) about 20 percent

Your subtype matters more than most people realize.

What Stage Really Means

Stage still matters, but it is only part of the picture.

Stage II patients had about a 9 percent chance of recurrence
Stage III patients had about a 30 percent chance

So for many stage II patients, the risk of recurrence after surgery is actually relatively low.

Does Chemotherapy Help

This is the question most patients are trying to answer.

This study found no survival benefit from chemotherapy in early stage appendix cancer.

Not overall
Not in stage II patients
Not even in patients considered high risk using colon cancer criteria

This is exactly what Dr. Shen told us before this data was published. **I do want to add that if David had been stage 4, Dr. Shen would have recommended Chemo before CRS in order to reduce the tumor, but only 3 months (not 6).

Why You May Be Hearing Different Recommendations

One thing I wish we understood earlier is that not all appendix cancer specialists are approaching your case from the same perspective.

There are surgical specialists and there are medical oncologists, and they are focused on different parts of your care.

Surgical specialists, often the doctors who perform cytoreductive surgery, are focused on removing visible disease and managing recurrence in the abdomen. They tend to see large volumes of appendix cancer and understand how these tumors behave over time, especially when it comes to patterns of recurrence and when surgery is still an option.

Medical oncologists are the doctors who manage chemotherapy and other treatments. Their training and treatment frameworks are often based on colon cancer, because historically that is the closest comparison that existed. So when they see “high risk” features, their instinct is to recommend chemotherapy, even though appendix specific data has been limited.

That is how you can end up with very different recommendations.

In our case, multiple specialists recommended six months of FOLFOX based on colon cancer guidelines.

Dr. Shen, who works closely with appendix cancer data at MD Anderson, was the only one who walked us through why that approach may not actually benefit earlier stage appendix cancer patients.

Neither side is trying to do the wrong thing. They are just working from different data and different experiences.

But for patients, it can feel confusing and overwhelming when the experts do not agree.

What Happens If It Comes Back

Most recurrences, about 88 percent, stayed in the abdomen

More than half of those patients were candidates for cytoreductive surgery.

Even among patients whose cancer came back, about 77 percent were still alive at five years

So recurrence does not automatically mean the worst case scenario.

What This Means for You

You deserve more than a one size fits all recommendation.

You need to know your tumor type, not just your stage.

You need to understand your actual risk of recurrence based on appendix cancer data.

And you need to ask whether chemotherapy is being recommended because it is proven to help, or because there has not been a better option until now.

The Bottom Line

For us, choosing not to do chemotherapy was not an easy decision. It felt like stepping into the unknown.

But now we have published data that supports a different way of thinking about early stage appendix cancer.

This is not the final word, but it is one of the strongest signals we have that early stage appendix cancer should not automatically be treated like colon cancer.

And for many stage II and stage III patients, chemotherapy may not be necessary.

What to Ask Your Doctor

If you are being told to do chemotherapy after surgery, ask why.

Ask what data that recommendation is based on. Ask if it is specific to appendix cancer or borrowed from colon cancer.

You deserve answers that are grounded in your disease, not just what has always been done.

Want to Read the Study Yourself

If you want to look at the actual data behind this, you can read the published ASCO abstract here: Risk of relapse and lack of benefit from adjuvant chemotherapy following surgical resection of early-stage appendiceal adenocarcinoma.

As always, this is not medical advice, but for educational purposes. Share this with your medical team and always consult them on your healthcare decisions.