Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

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jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Sat Mar 26, 2022 5:24 am

Thanks for the update, nifty624. I share the same sentiments. DH is about a year behind you. This was the most helpful thread for me.

Are there any other stage IV out there on W&W? DH seems to still be going strong. It’s not quite 2 years, but getting close. His last treatment was 7/29/2000, and they weren’t even sure at that point if the primary tumor had any cancer. It seemed totally destroyed, and felt the radiation would certainly eliminate it.

He officially opted for W&W in October 2020, so we will consider that as the 2 year mark although he was really NED for about 3 months before that.

His 2 year disability status qualified him for Medicare on 3/1/2022. Yay!

He just had his first colonoscopy 3/25/2022 since he was diagnosed with one on 8/23/2019, and it was good. He’ll have a follow up MRI in the upcoming days since it’s been awhile.

He continues taking the same supplements (in smaller amounts) he took pre-NED. IP6/inositol, Turkey tail (psk), MCP, occasional cimetidine (Tagamet), and berberine, quercetin, turmeric (curcumin). We don’t know how much this has helped, but feel it made at least some difference in getting us to this point.

His W&W schedule hasn’t been consistent. He was originally every 3 months, then got switched to 6 months, but only once. Then he switched doctors which made his recent check up happen 2 months earlier (so this week was after 4 months). His new doctor wants it to be back to every 3 months.

I agree with others who have recommended to be monitored closely in the beginning. We shouldn’t be too confident so soon since a substantial percentage of recurrences happen within the first 2 years.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

User avatar
beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby beach sunrise » Sat Mar 26, 2022 12:04 pm

Yes, close monitoring is what I advocate for. Cancer is what it is and I really believe close monitoring helps to not miss the surgery boat if needed/available.
Your supplements are good ones.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Fri Apr 01, 2022 6:44 am

The biopsy results from our 3/25 colonoscopy weren’t what we hoped for. DH was released with good news. The bump was determined to be a cyst.

It was ulcerated, and we felt he caused the mild bleeding while administering an enema the previous Monday before a scheduled W&W follow-up.

The lab found high grade dysplasia.

We are surprised because the colonoscopy team sent us home with great news that there was no tumor.

We currently have an MRI scheduled for 4/18. We are waiting for the surgeon to follow up, and are ready to prepare for surgery. Does anyone know how they could find high grade dysplasia with a cyst, and no apparent tumor?

Does anyone have a similar experience? Any recommendations?
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Fri Apr 01, 2022 7:34 pm

Quick follow up since the surgeon called us today. She told us there is no urgency, a relief.

The next step will be the MRI and an ultrasound with a biopsy that will go deeper into the location where the high grade dysplasia was discovered on the surface. That will give us a better indication about whether cancer is present.

If cancer is present, surgery will be necessary. If no cancer is discovered, he will have the option to continue with W&W or to schedule the surgery anyway.

We have decided in either case to go with the surgery. It will result in a permanent colostomy. Over the past 3 years there has been a lot of anxiety and learning. Originally he was strongly opposed to a permanent bag. Now he’s comfortable with making that adjustment.

Knowing what we know now, and having time to adapt to the idea of a permanent bag, it is a no-brainer. We both feel very fortunate that he still has that option, and can potentially enjoy many cancer-free years.

Our plan is to abandon W&W, and the reason is that high grade dysplasia was discovered (accidentally). We believe cancer is imminent if it has not already begun.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

Claudine
Posts: 757
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby Claudine » Sat Apr 02, 2022 10:31 am

This seems like a wise decision. If my husband were to need a permanent colostomy right now I know he wouldn’t take it well at all; i’m glad to read that yours is now comfortable with the idea. I’ve got this article saved up, to show my husband, in case it’s his turn someday...
https://cancerwellness.com/cover-story/ ... on-cancer/
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 chemorad (Xeloda) 06/22; SBRT 11/22

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby roadrunner » Sat Apr 02, 2022 11:12 am

That’s a great piece. There are also a number of YouTubers with stomas who produce tons of helpful, positive, and honest content on this.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (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 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Sat Apr 02, 2022 12:30 pm

That was a very nice article, Claudine. Thank you for sharing. Dogs are therapeutic, no question about it. We had a best friend a long time ago. When he left us, it killed our spirit.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby prs » Sun Apr 03, 2022 7:45 am

jsbsf wrote:Quick follow up since the surgeon called us today. She told us there is no urgency, a relief.

The next step will be the MRI and an ultrasound with a biopsy that will go deeper into the location where the high grade dysplasia was discovered on the surface. That will give us a better indication about whether cancer is present.

If cancer is present, surgery will be necessary. If no cancer is discovered, he will have the option to continue with W&W or to schedule the surgery anyway.

We have decided in either case to go with the surgery. It will result in a permanent colostomy. Over the past 3 years there has been a lot of anxiety and learning. Originally he was strongly opposed to a permanent bag. Now he’s comfortable with making that adjustment.

Knowing what we know now, and having time to adapt to the idea of a permanent bag, it is a no-brainer. We both feel very fortunate that he still has that option, and can potentially enjoy many cancer-free years.

Our plan is to abandon W&W, and the reason is that high grade dysplasia was discovered (accidentally). We believe cancer is imminent if it has not already begun.

@jsbsf I'm so glad you have made a decision you are comfortable with. I'm certainly a proponent of W&W, but I always try hard to make sure my posts are neutral and do not try to influence posters one way or another.

I had never heard of dysplasia when you first posted and had to google it. I understand it is not cancer but can sometimes be a prelude to cancer. I fully understand this has caused a huge increase in stress level, and the urge to get rid of that stress once and for all must be very powerful. Hopefully you'll get some good news from the MRI and maybe the surgery could be less invasive than a permanent colostomy?
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

jsbsf
Posts: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Sun Apr 03, 2022 9:44 am

Thanks Peter. I had heard of dysplasia before, but not with regard to the colon. I remember my sister telling me her ovaries had dysplasia years ago, and I sort of dismissed it as no big deal. I think I was hearing dysplasia and thinking “displacement” as if they had moved a bit.

But over the last week I’ve read quite a bit about it. DH had his CT scan 3 months ago. They always report “diffuse wall thickening”, something else I recently investigated. “Diffuse” seems to be the key word, and so nobody was ever alarmed.

His previous physical exam was about a month earlier, and nothing seemed out of the ordinary.

After this more recent checkup, the (new) surgeon found a “mass” she couldn’t explain and assumed it was a tumor. It was ulcerated. She scheduled a pretty immediate colonoscopy for the end of that week.

The colonoscopy findings were a small polyp in a different location, and determined the suspicions “mass” was merely a cyst.

They took a tissue sample there anyway. Had they not, we would never have been made aware of the high grade dysplasia.

So there is some confusion. I’m thinking there might be some small thing more serious going on that inflamed the area somehow, creating the cyst. I’ve also read about something called nonpolypoid tumors that can be flat or even depressed, and hard to diagnose on a colonoscopy.

We know for sure that the lump was a cyst, and not a tumor. But we also know they discovered high grade dysplasia on the surface of the cyst.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

MadMed
Posts: 202
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby MadMed » Wed Apr 06, 2022 2:44 pm

ok, so i'm officially on W&W. Scans and sigmoidoscopies every 4 months. Surgeon told me today that highest odds of recurrence are in the first year, so i'll be expecting it. For now, it's good to avoid surgery and be ok. I can't imagine being lucky enough to get away with it, but at least my team of doctors supports it and has a program to manage it. I'll be ready if it goes sideways.
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: 105
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby jsbsf » Wed Apr 06, 2022 3:32 pm

Congratulations MadMed! That’s excellent news!
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby prs » Thu Apr 21, 2022 5:06 am

MadMed wrote:ok, so i'm officially on W&W. Scans and sigmoidoscopies every 4 months. Surgeon told me today that highest odds of recurrence are in the first year, so i'll be expecting it. For now, it's good to avoid surgery and be ok. I can't imagine being lucky enough to get away with it, but at least my team of doctors supports it and has a program to manage it. I'll be ready if it goes sideways.

Many congratulations @MadMed!!! I'm so sorry it took me so long to find your great news. Sometimes things get in the way of everyday life,,,eek!
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

Jolene
Posts: 178
Joined: Wed Jan 23, 2019 10:17 am

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby Jolene » Sun Aug 07, 2022 10:38 am

@Madmed ! Welcome to the WW club !

Reporting my 3.5 years of WW journey as of July !! Looking forward to the 4 year mark now... even had the next scope and scan booked in December !

I had a bit of a scare on the PET as something lit up in the nose area. Had to follow up with an ENT with several tests and it turns out to be an unexplained harmless inflammation. I have to say my heart sank when they said "something lit up" ........ Definitely not words that a WW survivor wanna hear !!! Had to count my blessings all over again when all the tests cleared.
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
Oct'19 - Flex sig, biopsy, PET/MRI
20-21 - Every 6 months - Full scope, Flex sig, biopsy, PET / MRI / CT
Jan 22 - NED - Flex sig, PET/CT
Jan 23 - NED - Flex sig, MRI

MadMed
Posts: 202
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby MadMed » Sun Aug 07, 2022 11:36 am

Congratulations on the 3 years Jolene. Just had my first colonoscopy post treatment. All is ok so far. Clean CT, MRI and colo.
Yikes on your scare, nose?? That’s a weird one. Glad it’s nothing. I had a scare like that on my CT, slightly enlarged mediastinal lymph node. Weird to go from RC straight to a chest lymph node without stopping somewhere. My oncologist told me last week that they are getting a lot of freaked out breast cancer survivors due to the same mediastinal swelling, it’s apparently due to the Covid shot!!! And will manifest on the side of which arm you get the vaccine. We’ll confirm on the next CT :D

I’m rooting for you, let’s hear it for 4 years NED! My surgeon told me each cycle of surveillance odds of recurrence drop.
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

Jolene
Posts: 178
Joined: Wed Jan 23, 2019 10:17 am

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby Jolene » Mon Jan 16, 2023 11:39 am

Hi all - just checking in and hope you are all well !

I thought to let everyone know that I just got the clear again for a 4-year mark of WW !!!!!!!

Looking forward to the 5th year !! :D

Chances of a recurrence drops again by another year !

However, it seems like every time a full scope or flex sig is done, the doc finds new polyps which he clips it out of course but I'm wondering why the hell do I have so many of them !
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
Oct'19 - Flex sig, biopsy, PET/MRI
20-21 - Every 6 months - Full scope, Flex sig, biopsy, PET / MRI / CT
Jan 22 - NED - Flex sig, PET/CT
Jan 23 - NED - Flex sig, MRI


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