Aggressive appendix cancer and right hemicolectomy: Chemo worth it?

First make sure you get a CT DNA test because new research shows that if that result is negative no chemo is warranted. If given the choice in that situation I would still opt for chemo and I would go both Xeloda and 5FU route. You want to make sure you get rid of any residual cancer cells. Ask about CTDNA test made by exact sciences and by natera

@dnfjc I was diagnosed with stage 4 appendix cancer in 2021 so I’m not in the same situation as you are. I had initial debulking surgery followed by 6 months of Folfiri and Avastin.

I don’t get to communicate that often with other appendix cancer patients as there are not that many of us. That rarity has made treatment more difficult.

I’ve been NED since HIPEC in mid 2022.

From a low chance of making 2 years I have a 70% chance of making 5 years.

Yes, not many to compare with for appendix cancer. That’s why I’m trying this forum. How do you feel after treatments? What does NED HIPEC mean?
I was lucky my aggressive appendix cancer was all contained with mucosa except for perforation is the risk. Dr removed whole specimen and then a month later I got right come to my and 20 lymph nodes removed. Pathology showed everywhere clean.

ThAnkyou. I will ask about that. Have you gone thru these chemos? Worried about long term side effects.

Yes I have I had both.... It's only a year ago however they were so minor I have forgotten about him I think I had a little bit of neuropathy in my left foot which was easily resolved by wearing socks.

@dnfjc NED means no evidence of disease. There may (or may not) be minute cancer cells that cannot be picked up on tests unless they grow bigger into tumours.

I feel great after treatment and have been so fortunate not to have any lingering side effects other than needing to manage my hydration and fibre carefully. I had a colon resection to remove diseased tissue and I can get constipation. I was fortunate not to need a bag (temporary or permanent) after my resection.

Given how aggressive your appendix cancer was, I would be inclined to have chemo to mop up if I was you but to avoid oxaliplatin (Folfox) if you can due to neuropathy. I had Folfiri and have no neuropathy.

Please let us know how you go 🌺

Interested to know what type of appendix cancer you have and everyone is a little different. Also, is there an option for you to have HIPEC to help ensure any tiny specs of cancer are taken care of? I have stage 4 grade 2 mucinous adenocarcinoma, and it was found after a tumor had formed on my fallopian tube. I had hysterectomy, right hemicolectomy and HIPEC surgeries but before that I did 6 rounds of FOLFOX. From what I understood it was to buy some time and "do something" according to colon cancer protocols between surgeries of discovery and HIPEC/debulking. I don't believe there is a great deal of research showing significant impacts with chemo for our cancer. If I was told I should do more chemo I would seriously rethink it. Instead, I would opt for another HIPEC surgery so my focus on always to stay healthy enough to do that all over again. I also scan every 6 months still and watch my cancer markers. All is stable so far. I am 4 years NED.

I had grade 2 mucinous aggressive appendiceal cancer found with ultrasound when I had lower stomach pain. It was 3 times larger than it should be and tumor had grown to the last layer (serosa) but all intact. I had a perforation on one end with mucosa t4. It was removed. All margins clean. (up against colon). A month later I had right hemacolectomy. And 20 lymph nodes removed. All were free of cancer and pathology report was excellent. It’s just the perforation that raises risk and causes concern. I chose not to do chemo because it would have maybe helped 5% and maybe not. They are treating it like colorectal cancer because aggressive appendix cancer so rare. Not much statistics out there … 50% chance I’ll get cancer again within 5 yrs. Getting ctscan in February to put my mind at ease. Bloodwork was good.
4 years is great for you!! Thank you for writing. Best of luck for continuing NED.

When I went in to oncologist first time she told me to call in a week with decision chemo or no. It was the holidays so I waited until yesterday to go in. Dr told me the option wasn’t there any longer because if there are bad cells they will already be out. Too late for chemo. She also said if did chemo it was very iffy if it would help or not. Like 5%. So my hard decision was made for me and I am relieved. No chemo. Bloodwork good and ctscan in February. That will ease my mind. Dr felt it was the right way to go and because no cancer present after Colectomy and 20 lymph nodes all clear
and markers all clean. Thanks for asking. How long have you been NED?

@dnfjc I’m so glad you caught your appendix cancer relatively early at stage 2. That makes treatment so much easier. Wonderful that surgery seems to have resolved your current cancer. Now you just need to believe you’ll be one of those who doesn’t get it again 🌺😊