NEW-Need some positivity here.

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DonutHead
Posts: 65
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Apr 10, 2020 9:21 am

Hello! I recently scanned NED as well so 2.5 after surgery and just over 3 with a clean bill of health. My doctor wants me to scan one last time on the 6 month interval, but I am concerned over receiving too much radiation and will in all likelihood refrain from another CT scan until the 12 month mark? Instead, I will undergo another colonoscopy at the 12 month mark although my doctor said it was not necessary and take an x-ray of my diaphragm instead. Any thoughts?

You know, the thoughts of regression always creep in, especially when things appear at their best and I allow myself to forget the past ordeal. PSTD is the best way to describe the feeling. I had a panic attack or two. Find myself depressed. Before I had no cares in the world. So, yes....talking to someone about your thoughts, feelings, concerns is therapeutic. I would probably look for a therapist that has seen patients with our own experiences since they are more likely to understand our position rather than just give us the clinical answers and approach.

So happy to hear you are doing well and getting along. Unfortunately, freaking cancer did more to is than just make us physically sick, but we are alive and in a better place than before so keep living and stay strong!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
03/2020: CT - NED (1.1 CEA)
Still Here!

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue May 05, 2020 8:15 pm

Hi there-
I say get the colonoscopy. Colon cancer patients are too scared to go a year or more! He will understand that.
I’m so glad you have been clear this long. That’s wonderful. So happy that there are indeed happy stories.

Yes it’s definitely PTSD but on high. I just watched the beginning of Dead Pool and saw the scene where he is dxed with cancer. I had an absolute colossal meltdown in front of my whole family. Thoughts of the Dx come in my head, the desperation, the I’m so sorry, why am I still here thoughts all run through my head. Blood work on May 29th and I’ll freak out again. Being “NY on Pause” sure sucks. I havent been anywhere but the supermarket since March 13 and have been teaching remotely which is so darn hard. I had to cancel my trip to Hawaii too. I’m losing it a bit. My senior will not have a prom and her graduation is on hold until the schools figure it out. I feel like Covid took that away from me. It all sucks. I just hope you are all well. Stay safe and wash your hands!!! It would surely suck to survive cancer and die of Covid.

Hang in there,
Lydia
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue May 05, 2020 8:18 pm

Hi Claudia-
You are correct. We have to sort of put it on a shelf. But other things trigger a panic attack. No one gets it like we do. Every tinge of pain makes me worry. Therapy is next if we can just get out of the house!!!!
Take care!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

jep
Posts: 256
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: NEW-Need some positivity here.

Postby jep » Tue May 05, 2020 9:58 pm

Hey Teacher2017!! I’m so glad you are doing well....I’ve been following your journey since you joined CC....great to hear from you....
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu May 28, 2020 8:26 pm

jep wrote:Hey Teacher2017!! I’m so glad you are doing well....I’ve been following your journey since you joined CC....great to hear from you....
jep


Hey there! Glad to hear from you too! We’ve about had it with the self isolation thing here in NY. Tired of the masks and the gloves honestly. How are you all holding up?
Lydia
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu May 28, 2020 8:29 pm

Ok bloodwork on Saturday. Here we go again. Can’t wait to walk in there, get the blood draw and check the portal every 15 min until I see the cea level. No sleeping. And I think my liver aches or is it in my head? Hoping you are all safe and Covid And cancer free....
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

User avatar
CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: NEW-Need some positivity here.

Postby CRguy » Sat May 30, 2020 1:39 am

" Stay positive ... TEST negative ! "

Goes for both Covid and CEA Lydia !!!
Best wishes for good results

Stayin' safe AND strong on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Atoq
Posts: 387
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Sat May 30, 2020 2:30 am

Good luck for the test!

Best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

teacher2017
Posts: 268
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Jun 05, 2020 9:10 pm

All good!!! Cea is 1.2 and all blood work looks good- liver numbers good too. So I go to bring my daughter to college in August and scan in Sept. Distance learning teaching was very rough!! Glad that’s over with too. Got the antibody test just to check and it came out negative. Was actually a bit disappointed I didn’t already have it...God knows I had everything else...JK I know it doesn’t guarantee you eobt get it. Come on with the vaccine already!

Stay positive friends,
Lydia
Last edited by teacher2017 on Sat Jun 27, 2020 8:55 pm, edited 1 time in total.
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5 10/18
Cea -1.2 12/18
Clear scan-12/5/18
Cea - 1.1 3/19
Clear scan- 3/19
Cea - 1.2 6/19
Clear scan-6/2/19
Colonoscopy - 7/19 CLEAR
Cea -1.5 8/19
Clear scan -8/19
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/2020

User avatar
Atoq
Posts: 387
Joined: Wed Oct 25, 2017 9:31 am

Re: NEW-Need some positivity here.

Postby Atoq » Sat Jun 06, 2020 5:18 pm

So nice! I am really happy for the good news! :D

Best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

DonutHead
Posts: 65
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Mon Oct 12, 2020 7:07 am

Just checking in...hope everyone is doing well and living life to the fullest! COVID sucks and sure has complicated things, but all is manageable. Missed my 3 year scan in September, but will get them in November (inshallah) if all works according to plan. Thanks to everyone for helping me get this far!
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
03/2020: CT - NED (1.1 CEA)
Still Here!


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