Can't believe how scary this whole thing is

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jts
Posts: 81
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.

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beach sunrise
Posts: 1140
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

10christa
Posts: 10
Joined: Fri Mar 29, 2024 7:23 pm

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

Postby 10christa » Thu Sep 19, 2024 10:06 am

Shieldmaiden wrote:Not really sure what I want with this post, just clearing my mind a little I guess. Got my 4th infusion of Oxaliplatin on Friday, still completely knocked out by nausea, and sooo, soo tired. Capecitabine 2000 mg x 2 for the next two weeks. Looking forward to be done with chemo, and at the same time so scared. Been experiencing a slight surge in CEA during chemo, onc thinks it's chemo induced. Hopefully she's right, but it scares me.. Bloodwork in five weeks, really not looking foreward to it :roll:


Hi,
In 2020 I was diagnosed and surgery. T3 n0m0 right side cancer, only surgery and I went for all followups and the fear and anxiety when something showed up anywhere was overwhelming. Then I get good news and I feel ok for a few months, then scans again and it was always somthing. Now four years later dealing with a rise in my cea which I never had before. It is very scary and reach out on places like this one to get support from other people who have been through it. Keep up with all your appointments. It will get better and you are a strong person and this will make you even stronger.
Right hemicolectomy-Hepatic flexure
Tumor size: 4.6 cm
Tumor perforation: Not identified
Adenocarcinoma
Moderately differentiated penetrates into pericolonic adipose
tissue
All margins uninvolved by invasive carcinoma, high grade
dysplasia/intramucosal carcinoma, low grade dysplasia
Distance of invasive carcinoma from closest margin-5.0 cm
Specify closest margin: distal
Lymphovascular invasion: Present
Perineural invasion: Identified
Tumor deposits (discontinuous extramural extension): Absent

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horizon
Posts: 1677
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Mon Sep 23, 2024 8:51 am

waw4 wrote:For encouragement, I will say was diagnosed stage 3b 14 years ago and have not had a recurrence so there is certainly hope for you too, even though the routine follow-up checks can be high-stress days.

A significant part of all this can be managing fear & apprehension, which I understand can be a frequent challenge against which you have to help defend your psyche. One way is not to accept your fears or the belief you will get bad news before you actually receive it—e.g. don’t capitulate to your fears if as of yet no actual evidence of them. Something like "don't count your scary chickens before they hatch"! -Bill


This is golden advice. It is unbelievably scary but I found that I was making things much worse by worrying about things that never happened. Hopefully you'll get better about that as more time passes. That was the case for me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?


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