Concerned about possible recurrence

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jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Concerned about possible recurrence

Postby jsbsf » Thu Mar 24, 2022 4:25 pm

Things have gone well under W&W. But Monday’s physical exam was troubling. We have a new surgeon, and she located a tumor 5-8 cm from the av, it’s a little higher up than the original, potentially overlapping where it was. We don’t know for sure how much of that area was covered with radiation therapy back in 2020.

Until now that area was referred to as wall thickening, and yielded no concern from any of the specialists. The last CT and physical check up were 4 months ago, and unremarkable.

The report this time was that the area was raised, friable, ulcerated with bright red blood. However there have been no symptoms. One pre-requirement was a fleet enema, and he felt like he could have possibly scraped the area of “wall thickening” trying to give himself the enema. For the past week I’ve been trying to convince myself that that was the case. But today, I’m feeling way less optimistic.

She ordered a colonoscopy for tomorrow, where a sample would be sent to a lab for results. They’re working quickly, and I’m thankful for that.

If it comes back positive for a recurrence, his only option is a permanent colostomy- which I’m guessing is the best possible outcome. He’s okay with that, which is a relief.

I know I’m worrying too much in advance, but does anyone have any similar experience? If he has to go back on chemo, will the FOLFOX still work this time? His CEA is 2.6, and he feels great.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

MadMed
Posts: 124
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Concerned about possible recurrence

Postby MadMed » Thu Mar 24, 2022 7:07 pm

Ugh, that’s deflating, I’m sorry. I hope the biopsy comes back negative and DH can continue on W&W.
Wish you a good outcome. Having a bag is not the end of the world, but not having surgery would be great!
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

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Thu Mar 24, 2022 9:10 pm

Thank you. He’s not worried about having a bag. It’s strange in a good way how he evolved about having a bag. For us it’s the idea of repeating everything again with the same lack of assurance. Chemo, surgery, chemo again and hope it works. The bag would take some getting used to, but not a deal breaker for us.

The doctor says it would require a 5 day hospital stay. So it’s pretty rough.

Thanks again. I’ll follow up as soon as I learn more.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Fri Mar 25, 2022 8:56 pm

I wanted to follow up on the first bit of news.

Today’s colonoscopy results were good. They found one polyp, and examined the “ulcerated mass”. They determined it was merely an abrasion. The mass was not a mass at all. Beneath the wall thickening, a cyst had formed.

They will send the specimens to a lab for testing, but the medical staff seemed convinced that there was no cancer.

We expect to follow up with an MRI. So, please be careful with those Fleet Enema bottles!
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

Nor Cal
Posts: 55
Joined: Sun Dec 06, 2020 8:18 pm

Re: Concerned about possible recurrence

Postby Nor Cal » Fri Mar 25, 2022 10:26 pm

Great news on the update
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - Present: 30 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

MadMed
Posts: 124
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Concerned about possible recurrence

Postby MadMed » Sat Mar 26, 2022 12:11 am

Outstanding news, thank you for sharing!
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

DarknessEmbraced
Posts: 3686
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Concerned about possible recurrence

Postby DarknessEmbraced » Sat Mar 26, 2022 7:40 am

That's wonderful news! :D
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! :)

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Mon Apr 18, 2022 4:09 pm

DH is having an MRI today. Unfortunately, we aren’t out of the woods. Even though the suspicious mass was determined to be a cyst during the colonoscopy, the biopsy lab results showed evidence of high grade dysplasia.

So, although high grade dysplasia is preferable to adenocarcinoma, something is not quite right. The MRI was already planned, but now they have to dig a little deeper.

Wednesday he has a GI appointment for an ultrasound where they will take 2 samples. One with FNA, and another where they will go in a bit deeper than the superficial strips they originally tested.

I’m wondering if there’s any possibility that what appears to be high grade dysplasia could be damage from the EBRT treatment to that area in July 2020, but feel like that’s wishful thinking.

He’s no longer eligible for radiation, and if cancer is found he will almost certainly expect an APR (permanent colostomy).
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Concerned about possible recurrence

Postby beach sunrise » Mon Apr 18, 2022 8:10 pm

Goodness, I don't understand all of it but want to say I hope it is something fixable with minimal effects to him.
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"

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Mon Apr 18, 2022 11:46 pm

Have you asked what they would recommend if they don’t find adenocarcinoma with the MRI or other tests (sounded like a deeper biopsy?) given that they know there is high-grade dysplasia present? Or perhaps they don’t “know” that—you said “evidence of.” That would be a pathology question I suppose, but I’d want to know precisely what that means.

I must note that this team seems to be bouncing around a good deal. That could be just a communication problem, or the difficulty of the case, but if it’s just what they are doing, I’d be a bit concerned about that under the circumstances.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Tue Apr 19, 2022 5:55 am

I may have worded it wrong, but this is a quote from the surgeon:

Had recent flex sig
Impression:
To cecum. There is a 2 cm clean based ulcer in the rectum, just 2 cm above the anorectal verge. Unable to retroflex due to tightness of the rectum. There is a 2 mm nodule just above the ulcer which was removed. The ulcer was biopsied but very friable with oozing which limited the amount of tissue sampling.

Path showed:
FINAL PATHOLOGIC DIAGNOSIS
A) RECTUM, BIOPSY
- PROMINENT LYMPHOID AGGREGATE
- NO EVIDENCE OF MALIGNANCY

B) RECTUM, BIOPSY
- SUPERFICIAL STRIPS OF RECTAL EPITHELIUM WITH HIGH-GRADE DYSPLASIA
- NECROSIS AND ULCER DEBRIS



Given the ulceration and necrosis I am still concerned of recurrence.
I have reviewed with him the findings and recommendation for ERUS and FNA biopsy. He agrees to proceed, will have GI arrange.
He is also awaiting MRI 4/18/22


He has been on W&W, and had little confidence in his previous colorectal surgeon. For the new year, he asked for a different surgeon and the new one seems much more aggressive. One big problem with the previous one is he seemed unethical because in the November or December meeting he pretty much stated that there could be cancer which they wouldn’t be able to verify without a biopsy, however since he was unwilling to undergo surgery there was no point in scheduling a biopsy.

This is false since DH understands W&W only as a *potential* alternative to surgery. If surgery is necessary he has been on board. However, from previous visits (including that one) the wall thickening showed no obvious reasons to be concerned.

The 3/21 meeting with the new surgeon discovered a mass that turned out to be a cyst. She seemed almost certain that this was an urgent matter that needed immediate attention. And the biopsy report from the 3/25 colonoscopy found a small polyp that was not malignant, next to the cyst. But the cyst biopsy showed HGD. So there is a lot of confusion.

They messed up his MRI schedule and rescheduled it for this afternoon. But that along with Wednesdays ultrasound should tell us more.

The new surgeon didn’t seem alarmed by the HGD. She seems more focused on the bleeding. But DH has been taking supplements that might work as blood thinners (which he has since stopped until after the Ultrasound). Additionally, he is sure he scraped that mass trying to give himself an enema the day the surgeon evaluated him on 3/21. So he feels like the ulceration and necrosis could have been self inflicted, and the HGD should be more concerning. I’m wondering if HGD is easy enough to assess or if it’s possible that what they see could be some inconsistency caused by EBRT almost 2 years ago, and looks like HGD. Possibly something new that’s being discovered early?

BTW he increased his cimetidine to 2x200mg twice a day for 5 days before and 2 days after the ultrasound.

So the results of the colonoscopy (3/25) seemed good at first with only a cyst. The lab reports (4/1) mentioned HGD. Everyone is a little confused.

The surgeon said that for now the goal is to find out more. She definitely recommends surgery if cancer is found on either of 2 samples. One is a fine needle biopsy, and the other is a cut to collect a deeper sample below the surface where they originally scraped.

If no cancer is found then they will discuss the next steps. I’m preparing for a 2nd opinion from UCSF in either case.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

Claudine
Posts: 682
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Concerned about possible recurrence

Postby Claudine » Tue Apr 19, 2022 8:36 am

I hope the new tests provide clear answers. This waiting must be so difficult!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met 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
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Tue Apr 19, 2022 10:22 am

One thing that you might wish to discuss with the new surgeon: Biopsy of colorectal lesions is not a reliable way of ruling out adenocarcinoma. In fact, observation by an experienced surgeon is more sensitive. (I will attach an article below.)

The problem is that biopsy samples only small bits of tissue, but HGD and cancer are not generally present in all parts of a lesion. My case was an example: My primary reduced greatly from treatment until all that remained was a flat red scar. My surgeon (who’s hyper-experienced, a W&W pioneer, super understanding and works with me), biopsied the heck out of it but told me based on his observations that “there’s cancer in there.” Biopsies came back negative for adenocarcinoma but positive for HGD. I wasn’t too excited, because I trusted him. MRI was inconclusive.

We ultimately agreed on a TAE (I acknowledged that there is some additional risk going that way). When it was excised, there indeed was some small amount of cancer left. So my surgeon was exactly right. Based on that experience and my reading, I believe the decision should be made by an experienced surgeon (that you trust, or that you confirm with a second opinion) in light of all available evidence with the heaviest weight on the morphology of the lesion. This may also may explain why your prior surgeon did not want to rely on biopsy, though there also seem to have been other issues there.

Your current surgeon seems to be doing the right thing by gathering all evidence, as well. Ulceration, friability and induration (hardness/palpability) are all diagnostic factors. Prior radiation treatment may potentially complicate things, I think, but I’ve never read anything on that, and my surgeon has never mentioned it other than to say it can “accelerate the process of polyp formation, etc.” (which may explain the benign polyp they found—I’ve had 2). They also apparently couldn’t get a good look at it in your husband’s case, but in any event you will soon have another MRI result and additional tissue sampling. That might rule something *in*, at least.

Good on you for getting a second opinion.

Also, I read it quickly, but I think the study below supports 90% specificity for positive HGD findings in CRC, though I don’t know if that would hold true in irradiated tissue.

https://figshare.com/articles/journal_c ... NS/6534005

Hope this helps your analysis and your communications with your team. You may already have had this perspective, but I, at least, had way more faith in biopsy than was warranted going in. It’s at best a part of an overall diagnostic approach, not definitive to rule out cancer.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Tue Apr 19, 2022 12:01 pm

Thanks Claudine and roadrunner,

I’m afraid if they find only dysplasia he might decide against surgery.

I’ve also read a bit about how even low grade dysplasia can accompany cancer. HGD is not sometimes called cancer in situ or pre-cancer for no reason.

This has been a long journey, and in the beginning my expectation for a best possible outcome was a cure with a permanent colostomy. I know he was adamant against a colostomy for a long time, but has come around.

Thank you so much for your valuable information. It solidifies my conclusions.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Wed Apr 20, 2022 9:08 pm

DH had his MRI yesterday and his Endoscopic Ultrasound today.

The GI stated that he is pretty confident there is no cancer.

He apologized for the colonoscopy doctor whom he believes may not have been familiar with the previous radiation and/or how it might have altered the tissue, and that what he observes looks quite normal.

A side note: when DH received his radiation treatment in 2020, that doctor told him with confidence that he expected his chance of a local recurrence to be negligible. He said he’d give him 1% over the next ten years. This had a huge impact on his decision to W&W.

HGD wasn’t discussed today, it seems like it’s possible that it wasn’t HGD at all. What’s odd is how the surgeon nor the GI seemed concerned with HGD.

It’s such a rollercoaster ride, but today was a great day and we will take it.

We plan to continue our “maintenance” supplements.

I’ll follow up with the official biopsy results.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W


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