I only have one more round of FolFox to go. Yay me! But now I need to get with my oncologist about what happens next. First she told me that I would have an appointment with her and she would check CEA every 3 months and I would get a scan every 6 months. I told her I wasn’t comfortable with that because CEA isn’t a good indicator for me, and she agreed to order scans every 3 months instead.
Now I’m trying to figure out if CT scans every 3 months is enough or if I need to ask for alternating types of scans, and blood tests looking for different markers.
I think I’ve figured out what the issue is. I feel like my oncologist is treating me like I’m lumped in with all stage 3 patients. And I feel like although we think we caught the cancer and did the surgery and chemo before it spread, I am much closer to stage 4 than I am to a stage 3A. That is why I feel like I need to be monitored more closely.
I’m waiting on my genetic testing results. The initial screening indicates that my cancer is unlikely to be genetic in origin. Other than that, when I read my path report and look up the terms, everything says “worse prognosis”.
On the other hand, from my oncologist”s perspective the surgeon feels he got all of the cancer during the initial surgery and I’m completing 12 rounds of FolFox so I’m done. She was going to schedule taking my port out. I told her I’d prefer to keep it for 3 years, but I’d compromise and agree to 2 years instead. I know that a reoccurrence would be overwhelming. The thought of also having to get a new port put in would push me over the edge.
I’ve been doing research on alternating CT scans with PET scans. I asked my nurse about the advantages of doing that. She said that in her own cancer journey, her insurance company wouldn’t approve the PET scans because unlike someone with Mets, there isn’t something to monitor with the PET scan. That makes sense to me. I think I could agree to getting a CT scan every 3 months and then getting a PET scan if there is anything of concern on the CT scan.
I need to do more research on ctDNA (liquid biopsy) which looks like it is FDA approved for situations like mine.
It is weird. I held up, emotionally so well throughout this whole process, but the closer I get to finishing chemo, the more depressed I feel. People act like in 2 weeks, I will be done with cancer forever. It will just be a little rough patch in my past, but I feel like, at best, there is only a 50% chance of that actually happening.
It is as if I have a fork in the road. I have no idea which way my life is actually going to go. I’m just struggling with how to hope for the best while being prepared for the worst.
Can anyone relate to that?
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
3/2020 Began 12 rounds of FolFox