Unsure how to proceed

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 5
Joined: Tue Feb 11, 2020 8:39 pm

Unsure how to proceed

Postby mhalpin1234 » Fri Mar 20, 2020 3:06 pm

Hello! I'm at a difficult decision point with my stage 4 cancer. Looking for insight, if anyone cares to share an opinion.

The short version of my cancer story is that I am four years out from my stage 4 diagnosis. Primary tumor in sigmoid colon in 2014, removed successfully. In 2016, liver mets. I did over a year of FOLFOX and Avastin, then had successful liver resection in late 2017, removing 5 tumors over both lobes of liver. NED and treatment free for 2018-2019; CEA was <1.0 and all scans clear. 2020 routine CT found solitary lung met. It was removed via VATS in Februrary. CT, PET, and MRI scans since January all show no other cancer anywhere. BUT...CEA went up instead of down after lung surgery. For ME, CEA below 1.0 means no cancer. Anything above that means there's cancer somewhere. That's just my personal history with CEA.

October 2019- CEA 1.0 (up from being below 1.0 all year)
January 2020- CEA 1.8
Had surgery in February
March 2020- CEA 2.5
two weeks later-CEA 3.1

So CEA is slowly ticking upwards. This is what happened for the entire year of 2015 before I got the stage 4 diagnosis in 2016 with 6 liver mets. CEA just slowly crept up to 12 while scans continued to be clear, for an entire year.

Oncologist wants me to do 3 months of FOLFOX now. He agrees that CEA is ticking upwards because cancer is somewhere, we just don't know where. Did an MRI of liver this week, just to look. Scan was all clear, but perhaps that just means cancer is still too small to see on scan. Technically, my CEA is still in normal range. But we know that for me, based on my history, it's trending up and cancer is brewing somewhere.

Onc wants to give treatment, doesn't want to 'wait and see' where the cancer will show up. He says I've been extremely lucky to have two recurrences that were operable. Claims it's very rare for that to happen in a stage 4 patient, and that my chances of that happening again are tiny. He thinks the next recurrence will be major and inoperable, so it's best to tamp it down now with 3 months of FOLFOX.

I see his point, but I'm not comfortable doing treatment with no radiological evidence of cancer to measure the effects of chemo. And I don't want to sacrifice a good quality of life now (which I have...I'm well and healthy) for 3 months, knowing that later in the year, once the cancer grows again and we find it on a scan, I will just have to do more treatment again, thus sacrificing more quality of life. I want to wait and let the cancer grow (crazy, I know) so we know what we're dealing with. Add the known immunosuppression that chemo brings to this coronavirus pandemic, and I'm just not on board with chemo.

I don't know what to do here. Would it be foolish to wait and see on this? I'd like this pandemic to get through its first wave before I have more chemo. I'd like to enjoy this spring time with my family here at home, preparing for my daughter's wedding, without chemo. I know I don't get out of this cancer thing alive; while I'm still here, I want to enjoy the time I have and feel well. But I also don't want to miss opportunities for treatment, IF they are reasonable. And I don't know if 3 months of chemo at this time is going to do much more than simply kick the can down the road, so that we're dealing with the same problem in 6 months.

Any thoughts? Much appreciated.

Michelle in Tn

Posts: 338
Joined: Wed Jan 14, 2015 6:09 am

Re: Unsure how to proceed

Postby plastikos » Sat Mar 21, 2020 2:27 am

Personally I would follow your onc. Have you looked into immunotherapy? It may be an option, albeit out of protocol, as well.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: No registered users and 31 guests