Dealing with NED in this stage 4 appendix cancer journey

Hello - I’m new to this site and hoping to get information and awareness from others who are on the same journey. I’ve been NED since HIPEC in May 2022 having previously had debulking surgery followed by Folfiri and immunotherapy. I understand there’s a strong prospect I will have a recurrence so I am being monitored by CT-PET scans. I was wondering who has had a recurrence, how soon and what treatments you’ve had. Thank you.

[SusanPMPS Partner PMPS Volunteer]

Hi there - it sounds like you have been through quite a lot recently. Each person is different, so it's difficult to answer fully. Sometimes a recurrence will involve more surgery, chemotherapy or 'watch and wait' - it all depends on your particular grade of PMP, where it is, previous surgeries etc. Sometimes a recurrence can happen fairly soon after surgery, sometimes it can take years to appear, everyone is different. Hope this helps.

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I hear you! I've been NED since CRS/HIPEC on 9 May 2022 and have been very well during that time other than recovering from 9 months of aggressive treatment. I try not to sweat over it and try to focus on making the most of each day, yet it is a question often on my mind. Like all things cancer it varies so much for each person even if we have trodden what appears to be an identical path. I have PET-CT scans and blood tests quarterly. My bloods remain very good but the last 2 successive scans have shown a small spot in the same place in my abdomen. My next tests have been brought forward by a month to January 2024. Holding thumbs.