Can't believe how scary this whole thing is

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jts
Posts: 80
Joined: Sat Aug 24, 2019 3:07 pm

Re: Can't believe how scary this whole thing is

Postby jts » Thu Aug 01, 2024 6:54 am

I don't know if it helps, but here is the mindset I've adopted since about my first follow-up scan.

Your primary tumor is gone. If the cancer spread, then it already spread, and it will show itself eventually. There is really nothing you can do now except be vigilant, keep yourself healthy, and live your life between scans with a little more urgency than the average person. Every time you get a clean scan, it is like your time of being healthy (not on chemo, not talking to doctors) is extended by 6 months. This is a huge gift. Use the time so you don't have any regrets.

Second, even if you do have a recurrence, it is, prognosis-wise, not the same as being diagnosed at stage 4. If/when a met shows itself, you will catch it early and the surgeons will be ready for you. When my lung met was found, it was almost a relief. It had been hiding there since some years before my diagnosis. Once it showed itself, they could get to work cutting it out.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

User avatar
beach sunrise
Posts: 1127
Joined: Thu Mar 05, 2020 7:14 pm

Re: Can't believe how scary this whole thing is

Postby beach sunrise » Sat Aug 03, 2024 11:01 pm

Chemo is done, right?
My surgeons words of wisdom to me when diagnosed was "Strong body, strong mind." And that is what I played in my head then and now.
Let us know how you are doing after chemo regime.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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