A big mystery solved?!?!

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claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

A big mystery solved?!?!

Postby claudine » Mon Jan 24, 2022 2:53 pm

For those of you who've been following our journey...
My husband's stage 4 CRC was diagnosed almost 4 years ago, via the biopsy of a lytic vertebrae met. The primary tumor was never found. - only some irritated bowel tissue from Crohn's disease flares he had as a teenager.
But.
BUTT!
Last Friday DH had a colonoscopy, the first one since the diagnosis and attempt to locate the primary; this was prompted by SUV uptake in his rectum during his December PET scan. And there, mid rectum, in all its glory, is a flat tumor, 4cm in diameter...

My take on this is that this is the primary that's been eluding us all these years. From what I can read, CRC doesn't metastasize back into the rectum (or very rarely and close to the anus, but that's not the case here). It was probably a very small, flat tumor that went undetected (but sent cancer cells that developed into mets), and since DH had about 2 years of chemo right off the bat, it stayed hidden. When he stopped chemo (January 2020) it started growing, but being flat, it was asymptomatic (no rectal bleeding) and went undetected on 3-month control CT scans, until this most recent PET.

He hasn't met with his oncologist yet (meeting scheduled for February 3, by which time biopsy results should be in). My understanding is that because it's mid-rectum, it will be possible to remove it surgically and avoid a permanent ileostomy (although a temporary one may be required while things heal). In a way, it's almost a relief - this would explain his high CEA values, and now we know where it all started. Unless I'm completely mistaken?

Thoughts???
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: A big mystery solved?!?!

Postby MadMed » Mon Jan 24, 2022 4:16 pm

Congratulations on finally finding it, hopefully this means your DH will now have a path to NED. I am not sure what is possible for mid-rectum, but i know from another patient of my surgeon's that a high rectum means a smaller surgery and a preserved rectum. I think in his case, he will still have an ileostomy to allow for the colon-rectum junction to heal. The takedown in his case is easier and the QOL will be good since he will still have a rectum.
Best wishes for a good outcome.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Mon Jan 24, 2022 5:03 pm

Thanks MadMed, yes, that's my understanding too (temporary stoma), although I'm sure we'll have lots more details once we've met with oncologist then surgeon.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: A big mystery solved?!?!

Postby beach sunrise » Mon Jan 24, 2022 6:23 pm

Wow, I'm shocked and happy at the same time for your husband. 4 Years in hiding!!!!
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

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: A big mystery solved?!?!

Postby Rock_Robster » Mon Jan 24, 2022 6:54 pm

Congratulations Claudine on solving the mystery! Obviously finding tumours is never great, but in this case it truly does mean one more step toward sustained health.

Good that it doesn’t sound like it’s very low. Did they mention the height from the anal verge? This seems to be a major factor both in the type of surgery (ULAR vs APR), the need for an ostomy (either temporary or permanent), and the bowel function after reversal. Mine was around 10-12cm high; I had a ULAR with temporary ileostomy for 6 months, then reversal. I’ll be honest - the adjustment was a challenge, but now 2 years later I have very close to normal bowel function (with a few adjustments).

One other thing to consider is that neoadjuvant chemoradiation is also usually used prior to rectal surgery, however given the uniqueness of the case and time that has passed since initial diagnosis, I don’t know if this would still be the case.

Best of luck for the consults.
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Tue Jan 25, 2022 11:22 am

Thank RR, it's great to get info from those who've actually been through it!
No details on exact location, the colonoscopy sheet just shows a bunch of pictures and says "4cm mass mid rectum". I suppose the oncologist may request an MRI to get additional details on the tumor.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: A big mystery solved?!?!

Postby stu » Tue Jan 25, 2022 1:46 pm

That’s quite incredible I’m so many ways ! It’s shown it’s face now !
My mum’s was nearly missed and it was actually the junior Dr who noticed it just as they were withdrawing the scope and they went back to the area . It had banded around the colon and it was folded over . No symptoms .
Anyway it’s always good to get the primary out so that is so helpful to find it after all this time .
take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Tue Jan 25, 2022 1:51 pm

I think that because DH had Crohn's it was assumed that the cancer originated from the area in his jejunum that was damaged (and resected early on), and since there was no rectal uptake then, they totally missed it... Sneaky bastard!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Fri Jan 28, 2022 11:56 am

Did they mention the height from the anal verge?


Got the full report posted today. It's actually rather low: 5cm from AV... The doc listed it as "mid rectum"... We'll see what the surgeon has to say.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: A big mystery solved?!?!

Postby Sunnycd » Fri Jan 28, 2022 8:56 pm

Claudine, I think this is the first time I can say I’m happy that a tumor was found! :D
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: A big mystery solved?!?!

Postby Rock_Robster » Sat Jan 29, 2022 4:41 am

Claudine wrote:
Did they mention the height from the anal verge?


Got the full report posted today. It's actually rather low: 5cm from AV... The doc listed it as "mid rectum"... We'll see what the surgeon has to say.

Thanks for the update Claudine. From my brief reading around, 5cm seems to be a common cut-off between “mid” and “low” rectum. Indeed will be good to hear the thoughts of the surgeon. Probably goes without saying that a very experienced rectal surgeon (not just colorectal) will be important here.

One more comment - maybe a bit cryptic - just because he can avoid an ostomy, doesn’t automatically mean he should. Make sure to have an honest conversation with the surgeon (or perhaps several) about likely bowel function with a smaller neorectum, and keep an open mind to all options. You may also want to do some reading up on LARS (Low Anterior Resection Syndrome) - MikeNH in this group has some very helpful posts.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Sat Jan 29, 2022 9:28 am

Thanks RR. If I remember correctly, Rikimaroo went back to colostomy after his reversal because it was too challenging and turned out to be easier with a permanent bag. The doctor who did the colonoscopy called last night to say that biopsy confirms that it’s cancer - not that we doubted one second!
Meeting with onc on Thursday and it will go from there, will keep you guys posted. Thanks for the support!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A big mystery solved?!?!

Postby claudine » Sat Jan 29, 2022 9:29 am

Sunnycd wrote:Claudine, I think this is the first time I can say I’m happy that a tumor was found! :D


Agreed, although I wish it would have been sooner, before it had a chance to grow that much. But so it goes.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resect. 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 chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: A big mystery solved?!?!

Postby DarknessEmbraced » Sat Jan 29, 2022 9:49 am

I'm glad the tumor was found.
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! :)

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: A big mystery solved?!?!

Postby JJH » Sat Jan 29, 2022 7:40 pm

Claudine wrote:...Meeting with onc on Thursday and it will go from there, will keep you guys posted. Thanks for the support!

Do you know the agenda for Thursday's meeting with the oncologist? What about a meeting with a surgeon to discuss type of surgery?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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