Update (9 months post surgery) (6 months post chemo)

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Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Mon Jun 22, 2020 11:09 pm

Hi All!

I wanted to touch base and give an update on how everything has been and where I'm currently at in my life. I haven't posted in a long while as the message board became a habitual check it everyday thing and although this message board was the best thing ever for me during my hardest times, it was tough to always check this place as it acted as a reminder of my journey, both previous and continuing as I try and keep moving forward.

Part of me doesn't want to post here as to not make anyone else feel bad or jinx myself.

LONGER STORY :

Well here I am, 6 months ago I was undergoing chemo and awaiting the arrival of my first kid due late January. I got my first CAT scan January 6th and it came back clean. It was a huge occasion even though realistically I know that the cancer having been in my lymph nodes may take years to spread.

Time goes by-- each tiny victory feels amazing. Finishing chemo and rebuilding my weight and strength -- getting a clear CAT scan and CEA tests every few months within norms-- and just last week, my first Colonscopy. I had MAJOR anxiety leading up to it as the numbers show that if there's a reoccurrence there, especially early on, that I'd be done.

January 26th comes and I feel great post-chemo (no lingering side effects of the CAPOX). My son is born. He's only 5.5 lbs but healthy. Fatherhood the first few weeks was obviously insane as I had no idea what I was doing, and all on a completely sleep-deprived brain. I feel good and most of my energy and thoughts go to making this tiny human survive and by end of March, smile at me. COVID is firmly here in NY so we pretty much never left the house from end January (because of the baby) through May (b/c of COVID).

Last week the colonscopy finishes and long story short on that -- everything is normal and healthy looking, no polyps. What a relief because even a polyp would have shaken me.

My baby has been the biggest blessing. He is the happiest thing in the world, always smiling and really easy for a baby. My wife has been amazing too and I feel like the luckiest guy in the world.

Next week I have my port removal scheduled. Considering I was stage 3A -- is this a bit premature? I'm always gardening and doing home small construction projects etc and my entire family thinks I should get it removed, but I'm hesitant because the reality of cancer is I have a 30-35% chance of recurrence and I'm not nearly as optimistic on my long term health as the rest of my family is or pretends to be. Are there usually any complications getting it removed? The only reasons to keep it at the moment are the regular oncologist visits and the yearly CAT scans.



TLDR:

I've been good, clean scans and scope, feeling good, new baby, port removal question directly above this TLDR.

Wishing you all health and a smooth time out there. Thanks for listening! <3
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2 of 15 sampled Lymph nodes were cancer
Stage 3A T1cN1M0
CAPOX for 3 months finished Dec '19
Clear CAT Scan 1/6/20
Clear Colonscopy 6/18/20

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Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Mon Jun 22, 2020 11:14 pm

https://imgur.com/a/5Mtboc7

There's me and my son Aviv. Only 5 photos -- hope it's okay to post them!
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2 of 15 sampled Lymph nodes were cancer
Stage 3A T1cN1M0
CAPOX for 3 months finished Dec '19
Clear CAT Scan 1/6/20
Clear Colonscopy 6/18/20

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CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby CRguy » Mon Jun 22, 2020 11:35 pm

Zackattack wrote:Hi All!
I wanted to touch base and give an update on how everything has been and where I'm currently at in my life. I haven't posted in a long while as the message board became a habitual check it everyday thing and although this message board was the best thing ever for me during my hardest times, it was tough to always check this place as it acted as a reminder of my journey, both previous and continuing as I try and keep moving forward.

Part of me doesn't want to post here as to not make anyone else feel bad or jinx myself.
The reason you felt good coming here is exactly WHY others will when they come and see your posts !!
We are all about sharing AND CARING !!!

Zackattack wrote:Next week I have my port removal scheduled. Considering I was stage 3A -- is this a bit premature? I'm always gardening and doing home small construction projects etc and my entire family thinks I should get it removed, but I'm hesitant because the reality of cancer is I have a 30-35% chance of recurrence and I'm not nearly as optimistic on my long term health as the rest of my family is or pretends to be. Are there usually any complications getting it removed? The only reasons to keep it at the moment are the regular oncologist visits and the yearly CAT scans.


Exec Summary :
I kept my port for nearly 3 years because it gave me no problems and I had it put in due to a recurrence at about 3 years post TME.
No issues at removal with a vascular surgeon.
Other people's opinions do not matter : your life, your body, your choice !

FULL STORY : sorry BUTT you'd have to read my other 10,160 + posts here to get it all, though cruising the topic listed in my signature will give you more info ... with way less "browsing"

Cheers and best wishes to you and your new family
That is one happy and cute little munchkin

CRguy on the journey
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

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beach sunrise
Posts: 118
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby beach sunrise » Tue Jun 23, 2020 12:54 am

I love updates like this!!! I wish you the very best. Your baby is so stinkin cute!!!!
As far as the port goes, I was really advised to keep it 3-5 yrs with maintenance flushes every 6 mths.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: Update (9 months post surgery) (6 months post chemo)

Postby boxhill » Tue Jun 23, 2020 8:31 am

Love the photos!

I'm happy you are doing so well.

I can understand a desire to get the port out, since keeping it requires a visit to have it flushed every 6 weeks and thus a constant reminder of cancer. Your family's opinion is based on wishful thinking, I'd say. Certainly the odds are probably in your favor, but you have a more realistic view.

Am I reading correctly that your followup is only going to be a yearly scan? Is that the norm in your situation? I would have thought they would be more frequent at first....
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (9 months post surgery) (6 months post chemo)

Postby Claudine » Tue Jun 23, 2020 10:55 am

CONGRATULATIONS on this beautiful new little human being! What a fantastic way for you to focus your energy and mind away from this wretched disease!
Re. port removal - my husband had his taken out after the first round of adjuvant chemo; it was a piece of cake (outpatient procedure, took 5 minutes). But since cancer came back, he had to have one reinserted a few months later... But he's stage 4, so removing it was probably premature (I guess his onc is a very optimistic person!). It was actually a blessing in disguise, as he could feel the first port (not painful but annoying); the new placement is much better, he can totally ignore it. He'd rather not ever need it again, but as I said, he's stage 4...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Tue Jun 23, 2020 4:08 pm

Thanks for all the very kind words and your inputs. My port is fairly comfortable so I'm still on the fence, it does cost me $125 per visit every month so that adds up. Yes boxhill, I believe they are doing yearly CAT scans. Maybe it's my age (37?)...not sure why it's not 6 months or more frequent.

One further question:

So I've never had a PET scan and it sounds like an important diagnostic tool -- should I have requested one or should I ask to get one every xx interval? Is it possible to just ask for one for my body or is it specifically targeted to one organ? Like obviously most likely place of spread would be liver or lungs. My Oncologist wouldn't even run my baseline pre-chemo CA 19-9 because she said "that's a number for pancreatic..." even though I sent her studies showing that it helps detect metastasis so I'm not sure she'd even do so.

Do I pursue another Dr or should I attempt to demand to start testing my CA 19-9. MY CEA is always between 1 and 1.5 so far so it may not be the best indicator for me (or hopefully it is :D )

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CRguy
Posts: 10179
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby CRguy » Tue Jun 23, 2020 6:16 pm

PET scans usually accompany a low resolution CT for image registration purposes, and are ordered mostly as confirmation when something is found by other means. PET is a measure of metabolic activity = cancer is presumed to be more active tissue. Some docs like them, others not as much.

The imaging in any event should be CAP (chest-abdomen-pelvis) which would look for local recurrence, liver and abdominal mets and LUNGS ! ) Low rectal cancers have a known propensity to met to the lungs where higher large intestinal CRC tends to "prefer" abdominal/ hepatic mets ???
( Has to do with vascular circulation patterns and lymphatic drainage patterns )
Just a very general generalization though because cancer never plays by the rules !

CA 19-9 will often be used where CEA is not a marker (= me ) and would be just one of a number of alternates to consider.
Again some docs agree some don't. A second opinion is always an option.
Your life = your choice IMO

Cheers and best wishes
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

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (9 months post surgery) (6 months post chemo)

Postby Claudine » Tue Jun 23, 2020 8:43 pm

To add to CR Guy - PET will catch activity above a certain size (7-8mm I believe) = DH had multiple tiny lung nodules up to 5mm and they did not « light up » on PET, they were found on regular CT scan (checking PET from a few months before, they were there but had no visible uptake, unlike the large adrenal met).
Main thing is that PET scans are very expensive, so I’m not sure about insurances covering « routine » PETs. More likely, a CT scan will show something weird, and a PET will then be ordered to confirm tumor activity. At least that’s been our experience (here in the US).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

DarknessEmbraced
Posts: 3465
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Update (9 months post surgery) (6 months post chemo)

Postby DarknessEmbraced » Sun Jun 28, 2020 11:03 am

Congratulations! That's wonderful! :) I'm glad that you and your son are doing well! :)
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! :)

debb
Posts: 186
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Update (9 months post surgery) (6 months post chemo)

Postby debb » Sun Jun 28, 2020 1:44 pm

Congratulations on all your good results and especially on the birth of you beautiful son!!!
If you feel your port is burdensome on any level, whether it's the expense or the reminder, then just get it removed. God forbid you need it again, it can just be inserted again, no big deal. Live your life with joy!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

CF_69
Posts: 105
Joined: Sat Dec 22, 2018 9:44 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby CF_69 » Sun Jun 28, 2020 4:58 pm

Congratulations on your success and on the birth of your son.

Mine was only 3 months old when I was diagnosed. He’ll be 2 next month.

Children truly are a blessing.

I’m about 3 months late on my 1 year colonoscopy due to Covid I assume.

It’s a marathon, not a sprint. Best wishes going forward.
47 at diagnosis
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

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Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Mon Jun 29, 2020 1:57 pm

CF_69 wrote:Congratulations on your success and on the birth of your son.

Mine was only 3 months old when I was diagnosed. He’ll be 2 next month.

Children truly are a blessing.

I’m about 3 months late on my 1 year colonoscopy due to Covid I assume.

It’s a marathon, not a sprint. Best wishes going forward.


Yes, i'm in for the marathon. Hopefully it'll be just a nice simple long jog from here :-) Good luck on your story and let's keep doing the parent thing!

I decided to keep my port at least until next CAT scan in January. It sucks but it's in a good place and barely bothers me in the day to day so I don't want to risk another re-placement in the future that isn't good.


Does anyone know how to ask your Dr. to run CA 19-9 test? She refused twice in the past and I know she didn't even call me back this time. July 1st I'm getting labs drawn but I feel strongly that I want that done
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2 of 15 sampled Lymph nodes were cancer
Stage 3A T1cN1M0
CAPOX for 3 months finished Dec '19
Clear CAT Scan 1/6/20
Clear Colonscopy 6/18/20

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beach sunrise
Posts: 118
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby beach sunrise » Mon Jun 29, 2020 2:08 pm

I got the push back on several extra markers so instead of begging I went out on my own and got the extra markers thru Life Extension. They use lab corp. Right now they are having a bloodwork sale.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR ostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj mFOLFOX6, cea 7
8 rds 6-10 CEA 11.4, 4 more no oxa
6-17: CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2: CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
MHL1+
PMS2+
MSH2+
MSH6+
Chemo sensitivity test NCI "Test failed, neo-adj chemorad did its job. Not enough ca. cells to test."

User avatar
Zackattack
Posts: 49
Joined: Mon Jul 15, 2019 4:28 pm

Re: Update (9 months post surgery) (6 months post chemo)

Postby Zackattack » Mon Jun 29, 2020 2:17 pm

beach sunrise wrote:I got the push back on several extra markers so instead of begging I went out on my own and got the extra markers thru Life Extension. They use lab corp. Right now they are having a bloodwork sale.


Oh, that's great! Thanks, i'll look into it now! Which other markers did you get done (and why if you have the time)

Edit: I see your signature that you tested CA 19-9 CA125 AFP. Is it worth me getting the CA125 also in your opinion?


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