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

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Jolene
Posts: 180
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
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Mon Jan 16, 2023 12:55 pm

It may depend on where your polyps are. If they are rectal, and in the CRT “zone of death,” you should consider whether any accelerated process in that area might be due to the radiation therapy.
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
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Suelee20
Posts: 11
Joined: Sat Dec 31, 2022 1:44 pm

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

Postby Suelee20 » Tue Jan 17, 2023 2:53 pm

Roadrunner,

What is CRT zone of death? I’m trying to get a handle on the viability of surgery or some procedure of my husband’s tumor in the rectum. Granted, his cancer is not under control which is also one of the reasons why Dr doesn’t recommend surgery due to being off chemo for so long.

Thanks
Sue
Wife of DH (52); DX 9/27/18; CEA 22.9
10/31/18 LAR; Rectosig;6.2x4.5x1.1cm; Inv adenocarc; LowGr; pT4bN2b;tumor inv through muscularis propria into pericolorectal soft tissue;tumor inv peritoneal memb, ext to the serosal surf,inv the pelv sidewall;LN - 8/27;neg margins;WT-KRAS,NRAS,BRAF; MSS
Surg2/21(liv)
Ablat3/19(liv)
AdjChemoRT+Cap8/19(pelv)
Cykniferad1/20(liv)
SBRT12/21(lungs)
Stent6/22(rect)
CAPOX+Bev(4x);Folfiri+Bev(5x);Cap+Cetux(5x);Capiri+Cetux(14x);Oxali+Cetux(7x)
1/23Capiri+cetux totrytoslowprog

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Tue Jan 17, 2023 4:31 pm

I was just using a colorful term for the area in the rectum that’s in the radiation field when rectal cancer is treated. Even with current technology, healthy rectal tissue is irradiated, which causes permanent damage. In some cases, this can lead to an accelerated polyp process in that area.
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
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jan 27, 2023 1:12 pm

roadrunner wrote:I was just using a colorful term for the area in the rectum that’s in the radiation field when rectal cancer is treated. Even with current technology, healthy rectal tissue is irradiated, which causes permanent damage. In some cases, this can lead to an accelerated polyp process in that area.


Gosh ! I never thought about this. A lot of the polys are in the rectal area as I do the sigmoid flex every 4 months , 6 months in the last couple of years.

This could potentially mean I should be doing a scope every other year forever to keep removing polyps. :|

I will ask the doctor about this possibility the next time ! He couldn't answer me when I asked why does he keep finding new polyps to remove !
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
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Fri Jan 27, 2023 2:42 pm

I have the same concern. My colorectal surgeon is a leading edge, world-class guy, and he feels this is likely at least part of the picture. I had a TAE done last time, he did another previously by lift-and-snare. My situation is quite complicated given the risk-based approach I took, so YMMV, but yeah, it’s something to watch.
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
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Wed Jul 19, 2023 12:11 pm

just stopping by to say hi to all.
Been cleared by oncologist, no more follow ups, Surgeon said that he is gonna do scopes for 10 years before he let me go.
So life is good, no complains on my end.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Aug 10, 2023 11:19 am

Hi all - just checking in. I'm pleased to say that I'm 4.5 years in the clear of WW ! Looking forward to hit the 5 year mark in Dec 2023 ! Fingers crossed !

Can't believe how time flew by... I still remember the days when I sat in front of the forum crying and asking questions for help and support.

I looked back and appreciate every single day that has been given to me and tried to live it at its best. This has got to be the biggest miracle of my life even if I hadn't quite hit the 5 year mark yet.
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
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Jan 09, 2024 1:27 pm

Welcome, 2024. I have not been on here for quite some time and I don't get notifications to remid me (until today, when O Stoma Mia's post generated one!).

I have to review my signature but I've been on W&W since Feb 2019. Hard to believe it's 2024. I have been down to a flex sig 2x a year and MRI once a year for a few years now. I also have Chest CTs (which always generate something random that they then follow up on). I will have my "final" W&W checks (flex sig, MRI, CT) this Spring (fingers crossed). I am a bit nervous about having no surveillance so that will be a big discussion at my next doctors visits. My doctors make it out as if I am good to go with no worries, but I have a hard time believing that.

I have been very lucky with lack of recurrence (so far) and also - very good health insurance. This robust insurance will end this year (COBRA via parter's job loss) so I'll be interested to see what is covered for my Spring visit (depending on what insurance we have then). The insurance piece is a big one and I'm not sure if I'd have had the options I had (second opinions, etc.) without the robust insurance we had. More to be grateful for...

I will take time now to check out this thread. I wish everyone the best health possible in 2024.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Jan 09, 2024 1:41 pm

prs wrote:
lakeswim wrote:Oh my, I haven't been on here in at least a year but just received a rare email notification (not sure why I don't get them more often) that you posted and what a time to pop in and see this first thing. CONGRATULATIONS, PRS! This is truly AMAZING to read! Thank you so much for sharing it with us.

Do you have any LT side effects or do you feel as good as new? (I know I have some - only a few years out - so wondering about how you feel - besides ecstatic right now, obv.)

I need to update my signature and update the group (and will soon) but suffice to say for now that this is wonderful news and I'm thrilled for you, PRS!

- Lakeswim

p.s. I had chemo before radiation.

Thank you @lakeswim! Yes I do feel great, and even though it's six years out I still see signs of gradual improvement in my recovery from treatment. In particular my rectum is decreasing in sensitivity and the frequency of those sudden urges to use the bathroom have all but gone. I think I can safely say my toilet habits are just about back to normal. Unfortunately this has been offset by the old man's prostrate problem of needing to take leaks much more frequently! :D

The only long term effect I see is the continued low blood counts from the effect of radiation. These have been pretty constant the last five years and I do not expect them to ever change. All my numbers were well into the normal range before treatment began. I get a blood test every time I do a follow up visit with my local oncologist. Here are the last week's results versus the Kaiser "normal range".

WBC 3.2 vs normal of 4.0-11.0
RBC 4.05 vs normal of 4.7-6.1
HGB 12.9 vs normal of 14.0-18.0
HCT 39.6 vs normal of 42.0-52.0
Platelets 144 vs normal 130-400

These low numbers don't really have any effect at all on my ability to lead a normal life. The only real impact I've seen is I can't exercise with the same intensity level as I once did. My heart rate gets too high and my legs get tired much sooner, presumably because my blood can't carry the same amount of oxygen as it did before treatment. Of course I'm also getting old so that isn't helping either! :D

I skipped the five year follow up visits because of Covid, but now that I'm six years out from CCR both my surgeon and oncologist said I would be switched to annual follow up visits from now on.


Hi Peter. Thought I'd comment that my WBC (due to low lymphocytes) remains low - 5 years after treatment. The doctors don't seem worried at all despite also saying that these numbers should be normal after one year after treatment. I don't have a ton of energy (I used to be an athlete) but I also blame menopause and life for that! What is your surveillance schedule like at 6 years out? I'd like to know! Thank you!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Feb 05, 2024 1:49 pm

Hi all,

The day has finally arrived where I can finally say I'm officially 5 years in the clear from W&W ! Recurrence rate should be at an all time low. Dr has put me on a yearly check up just in case. Not sure what to say anymore. It's been hell of a journey and I cannot thank this board and this thread especially enough. Very lucky to have met a doctor who is wiling to go through the W&W with me all the way, the stars were aligned as my insurance coverage is wide, so he had all the tools in the kitchen to do whatever he needed to. The journey has really changed my perspective about life, job, love and family. My marriage has become stronger because of this.

I don't work the weekends or overtime anymore, putting myself first and foremost. I eat much healthier these days, lost weight and exercise whenever I can. Huge cut down on sugar and carbs where I can help it. I could improve on sleeping earlier as I still have the late night owl habit.

Hope everyone is well !
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
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !


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