2 years since diagnosis

Please feel free to read, share your thoughts, your stories and connect with others!
Markdale
Posts: 41
Joined: Wed Dec 02, 2020 4:45 pm

2 years since diagnosis

Postby Markdale » Mon Sep 05, 2022 11:20 pm

Hi everyone, I’m now 2 years since diagnosis. When I first found out I didn’t think I would last this long. It’s been more than a year since chemo finished and I’m still in relative good health. Recently a nodule has grown a mm and my cea was 8.6 but I’m hoping it was a result of inflammation post sabr I have a ct/pet scan in 2 weeks to see what’s up.
I think I have logged in to this site nearly everyday, hopefully I can slowly taper off but it’s been a big help. A big problem I have is it feels like cancer is all I’m about now it’s always on my mind hopefully if I remain in good health I hope it slowly drifts to the back of my mind.
I don’t post much here as others have much more knowledge than I do I can just post my experiences.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

Claudine
Posts: 728
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 2 years since diagnosis

Postby Claudine » Tue Sep 06, 2022 2:00 pm

I don’t post much here as others have much more knowledge than I do I can just post my experiences


Which is the case for most on this forum; keep sharing them, it is so beneficial and a crucial complement to the published literature! I hope your scan comes back clear XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

roadrunner
Posts: 286
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Tue Sep 06, 2022 4:34 pm

Markdale:

An interesting topic. I’m a little over 3 years out from diagnosis and am in an uncertain but hopeful state on the issue you mention. I am by no means certain, or even optimistic, that I’m out of the woods, but am for now NED and feel as good as I ever have. I wouldn’t say that cancer ever leaves my consciousness completely for long, but I think that’s ok. It has sharpened my enjoyment of, and urgency for, life. I have said in the past that if it doesn’t get me, it will have been a great gift (despite a few scars and dings to QOL along the way). That said, I’m grateful when I do forget it for a while, also. I’m never going back to that person I was before, but I try to do everything I can to enjoy the person I am now (some days I succeed better than others). I am beyond grateful that I’m here and healthy enough to make that effort. I do think everyone is different, and so I hope you find your peace with this, whether it’s acceptance or forgetfulness. Not sure if that was helpful, but I hope so.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear

User avatar
beach sunrise
Posts: 694
Joined: Thu Mar 05, 2020 7:14 pm

Re: 2 years since diagnosis

Postby beach sunrise » Tue Sep 06, 2022 5:27 pm

I hope for you to have a clear scan. Keep us posted.
I have to say even though cancer hangs over us we all should live life the best we can and not let cancer in on everything we do.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

DarknessEmbraced
Posts: 3716
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 2 years since diagnosis

Postby DarknessEmbraced » Sat Sep 10, 2022 7:36 am

I hope it was just inflammation. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Markdale
Posts: 41
Joined: Wed Dec 02, 2020 4:45 pm

Re: 2 years since diagnosis

Postby Markdale » Thu Sep 15, 2022 9:46 pm

I had the ct/pet scan yesterday. The oncologist said there appears to be a recurrence at the site of the wedge resection along the staple line and cea has doubled to 20 in 3 months, there was still some inflammation. All disease is still confined to the right lung, rest of the body is still clear. The oncologist will organise a mdm and I will have an appointment with the radiation oncologist to see if sabr is still an option. She spoke about chemo did not recommend folfoxiri but folfox. My thinking is if folfoxiri didn’t kill the Mets something weaker definitely won’t and it will put me on a chemo for life path, but maybe some systemic treatment will be of benefit. I will have another scan in 2 months to see what’s happening and go from there.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules

roadrunner
Posts: 286
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Fri Sep 16, 2022 3:35 pm

Mark: Sorry you got this news. It sounds like you have very limited disease even if it is a recurrence, though, which is good. I couldn’t quite tell from your post, but wouldn’t there still be surgical options as well as SBRT and other ablations (e.g. cryoablation or radio frequency ablation)?
If nothing else has surfaced, I would think you’d want to look at those options for local control, with the onc’s current recommendation more focused on systemic therapy. If all of that’s right, I would ask about surgical/ablative options and why the onc thinks the recurrence merits systemic therapy when the original finding didn’t? Perhaps I’m missing something, but doesn’t this development just imply that the resection margin wasn’t big enough (I’ll admit that recurrence after wedge resection is not something I have read about, so perhaps I’m missing something)?
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear

Markdale
Posts: 41
Joined: Wed Dec 02, 2020 4:45 pm

Re: 2 years since diagnosis

Postby Markdale » Sat Sep 17, 2022 4:24 am

Thanks roadrunner, I told the onc that I want to go local control. I think whenever something new comes up they almost always send it to a multidisciplinary meeting where the other specialties get to voice their opinion. I think everything that has been in the right lung has been there since my initial diagnosis 2 years ago. I have never had such a high cea before even when I had the primary tumor still in, I’m worried there might be something else going on
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: low anterior resection tumour t3n2m1 4/24 lymph nodes. No ileostomy.
11/20: pet scan showed low to moderate uptake of glucose.
11/20: folfoxiri - 10/6/21. 12 rounds in total
12/20: ct lung biopsy of lung nodule to confirm metastasis. Biopsy unsuccessful
1/1/21 thoracotomy (unsuccessful)
2/2022 sabr to 2 lung nodules


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



Who is online

Users browsing this forum: No registered users and 9 guests