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

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mozart13
Posts: 157
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Mon Jan 10, 2022 6:14 pm

thx guys, prs 6 years, that's great.

Jolene congrats on 3 years, was told first 2 years are most critical, you did your chemo after chemo/rad, that makes big difference.

I still remember my chemo post chemo/rad, 6th round, was so brutal, prs and some other member helped me to get through, will never forget that.

MedMad , just stay focused what is in front of you, radiation peak is some where between 16-20 weeks, but works for years after. It's good thing your surgeon is W&W expert. Anxiety, was there, that's normal ,I kept busy doing research, didn't know till last minute what will happen, was dealing with 3 hospitals, 2 were pushing for surgery, was hoping from beginning for WW, but ready to deal with whatever comes through the door. After chemo/rad went back to work to preoccupy my mind.
It is hard to stay focused, some times waiting is toughest one to deal with.
I had scope, MRI and CT right after radiation and 3 months after start of radiation , decision was made than.
Good luck !
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!

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Tue Jan 11, 2022 11:04 am

Thanks for the advice Mozart123. Words to live by and I have so far. One day at a time, hard for someone like me that likes to plan but i've successfully lived by that mantra so far.
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

MadMed
Posts: 123
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 Jan 12, 2022 4:21 pm

@PRS, Jolene and Mozart123, i promised to report back from Pre-OP. I had a very long and good meeting with the surgeon, we reviewed the MRI which stated "dramatic improvement from treatment" it mentioned one tiny area of hyperintensity that could be intraluminal fluid or remaining cancer. The surgeon then performed a sigmoidoscopy and felt around that area. he felt that It was fluid and didn't feel hard. Very positive news and the conclusion to the day was surgery postponed, we wait 6 weeks to seek how this area evolves and potentially, if all looks clear, get into W&W. I did mention (Thank you Joelene) that it had only been 9 weeks since Radiation, so we'll give it more time. His assessment was near complete response. We'll reassess in 6 weeks.

Thank you for your thoughtful advice, sharing of your experience and support.
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

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 » Wed Jan 12, 2022 4:43 pm

MadMed wrote:@PRS, Jolene and Mozart123, i promised to report back from Pre-OP. I had a very long and good meeting with the surgeon, we reviewed the MRI which stated "dramatic improvement from treatment" it mentioned one tiny area of hyperintensity that could be intraluminal fluid or remaining cancer. The surgeon then performed a sigmoidoscopy and felt around that area. he felt that It was fluid and didn't feel hard. Very positive news and the conclusion to the day was surgery postponed, we wait 6 weeks to seek how this area evolves and potentially, if all looks clear, get into W&W. I did mention (Thank you Joelene) that it had only been 9 weeks since Radiation, so we'll give it more time. His assessment was near complete response. We'll reassess in 6 weeks.

Thank you for your thoughtful advice, sharing of your experience and support.

Great news!!!
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

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Wed Jan 12, 2022 5:53 pm

MadMed wrote:@PRS, Jolene and Mozart123, i promised to report back from Pre-OP. I had a very long and good meeting with the surgeon, we reviewed the MRI which stated "dramatic improvement from treatment" it mentioned one tiny area of hyperintensity that could be intraluminal fluid or remaining cancer. The surgeon then performed a sigmoidoscopy and felt around that area. he felt that It was fluid and didn't feel hard. Very positive news and the conclusion to the day was surgery postponed, we wait 6 weeks to seek how this area evolves and potentially, if all looks clear, get into W&W. I did mention (Thank you Joelene) that it had only been 9 weeks since Radiation, so we'll give it more time. His assessment was near complete response. We'll reassess in 6 weeks.

Thank you for your thoughtful advice, sharing of your experience and support.


Couldn’t be better news, madmed.

SO happy for you!
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.

MadMed
Posts: 123
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 Jan 12, 2022 7:01 pm

Thank you both!
prayingforccr, I’ve been thinking about you. I hope you are in good spirits, the treatment you have planned is very promising.
I’ll be rooting for you and hoping for the best result. My wife just asked me at dinner if I had heard how you are doing.
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: 175
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Jan 13, 2022 12:24 pm

MadMed wrote:@PRS, Jolene and Mozart123, i promised to report back from Pre-OP. I had a very long and good meeting with the surgeon, we reviewed the MRI which stated "dramatic improvement from treatment" it mentioned one tiny area of hyperintensity that could be intraluminal fluid or remaining cancer. The surgeon then performed a sigmoidoscopy and felt around that area. he felt that It was fluid and didn't feel hard. Very positive news and the conclusion to the day was surgery postponed, we wait 6 weeks to seek how this area evolves and potentially, if all looks clear, get into W&W. I did mention (Thank you Joelene) that it had only been 9 weeks since Radiation, so we'll give it more time. His assessment was near complete response. We'll reassess in 6 weeks.

Thank you for your thoughtful advice, sharing of your experience and support.


Awesome news Madmed ! So very happy for you !! I remember how nervous I was running up to week 8 to see if I was a WW candidate ! Phew !

The radiation will continue to work its magic going forward.
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 - Wait and watch in place (12 weeks)
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR success. Surgery on hold. 6 cycles of Xelox.
Aug 19 - 6 cycles of Xelox completed
Oct 19 - Flex sig, biopsy, PET/MRI
2020 - 2021 - Every 6 months - Full scope, Flex sig, biopsy, PET / MRI / CT
Jan 22 - 3rd year NED on WW

Jolene
Posts: 175
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Jan 13, 2022 12:43 pm

prs wrote:Congrats on three years Jolene!!!

Yeah, Group Hug!!! :D :D :D :D :D


Hugs back to all !!! :D :D :D
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 - Wait and watch in place (12 weeks)
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR success. Surgery on hold. 6 cycles of Xelox.
Aug 19 - 6 cycles of Xelox completed
Oct 19 - Flex sig, biopsy, PET/MRI
2020 - 2021 - Every 6 months - Full scope, Flex sig, biopsy, PET / MRI / CT
Jan 22 - 3rd year NED on WW

nifty624
Posts: 23
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Wed Mar 02, 2022 5:56 pm

Hi Everyone! I just wanted to check in and give my update. I know how important it was to me when I first was diagnosed to read all the updates.

I am approaching the 3 year mark post surgery (the 3 year anniversary of stopping the post operative chemo will be in June).

I have had either colonoscopy or flex sig every six months since getting the chest tube removed in August 2019. Except for one slightly questionable "thickening" in one scope, I've had NED ever since July 2019 (which on pathology came back OK but watch; followed up in 3 months and all was well. I scar very thickly which is apparently what was there).

My CEA remains normal/low and my scans all come back clear with no evidence of disease anywhere in my colorectal tract or other organs.

So far so good!

I want to thank you all again - especially prs for starting this topic - because I had no idea that W&W was even a possibility until I started reading everything I could on university and medical research sites just a few weeks before my surgery (LAR) was scheduled. My surgeon never assessed me for this (his medical opinion was that I should have the LAR as my cancer was stage 3), but he was open to doing a minimally invasive procedure, W&W with the adjuvant chemo after I told him I understood the risks and I really was mentally prepared to do it. I am thankful that he was willing to work with me on this, and even more thankful that I found this topic here and then knew what to pursue further to learn as much as I could. I was on my own with this and reading everyone's stories here gave me the courage to just talk to the surgeon and tell him how much I wanted to try this way. And bless him, he helped me do it, as did the oncologist.

Anyway, I just wanted to update here so another person coming across this topic like many of us did will read yet another story of a good outcome!

Cheers Everyone!
F57yo DX T2 carcinoma 11/6/18
CT scan 11/09/18 MRI 11/15/18 T3N1M0
nCRT Xeloda/Radiation X28 12/10/18 - 01/22/19
Hospitalized 01/02/19 w/acute ileitis (radiation enteritis)
01/02/19 CT scan: tumor "significantly reduced"
6 week MRI 03/06/19 nearly complete CR
Flex SIg scope/biopsy 03/08/19; no evidence of malignancy
Local Excision TAMIS 04/05/19
Pathology: NED
Chest port installed 04/29/19
(FOLFOX) begins 05/01/19.
10/02/19 MRI -> NED
11/15/19 flex sig -> NED

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 » Wed Mar 02, 2022 6:44 pm

nifty624 wrote:Hi Everyone! I just wanted to check in and give my update. I know how important it was to me when I first was diagnosed to read all the updates.

I am approaching the 3 year mark post surgery (the 3 year anniversary of stopping the post operative chemo will be in June).

I have had either colonoscopy or flex sig every six months since getting the chest tube removed in August 2019. Except for one slightly questionable "thickening" in one scope, I've had NED ever since July 2019 (which on pathology came back OK but watch; followed up in 3 months and all was well. I scar very thickly which is apparently what was there).

My CEA remains normal/low and my scans all come back clear with no evidence of disease anywhere in my colorectal tract or other organs.

So far so good!

I want to thank you all again - especially prs for starting this topic - because I had no idea that W&W was even a possibility until I started reading everything I could on university and medical research sites just a few weeks before my surgery (LAR) was scheduled. My surgeon never assessed me for this (his medical opinion was that I should have the LAR as my cancer was stage 3), but he was open to doing a minimally invasive procedure, W&W with the adjuvant chemo after I told him I understood the risks and I really was mentally prepared to do it. I am thankful that he was willing to work with me on this, and even more thankful that I found this topic here and then knew what to pursue further to learn as much as I could. I was on my own with this and reading everyone's stories here gave me the courage to just talk to the surgeon and tell him how much I wanted to try this way. And bless him, he helped me do it, as did the oncologist.

Anyway, I just wanted to update here so another person coming across this topic like many of us did will read yet another story of a good outcome!

Cheers Everyone!


Congratulations @nifty624 and thanks for taking the time to give us the good news!

Our numbers are growing! :D :D :D :D
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

MadMed
Posts: 123
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 Mar 02, 2022 7:11 pm

Thank you nifty624, fantastic news! This as you said helps those of us going through this.
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

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 » Wed Mar 02, 2022 11:29 pm

MadMed wrote:Thank you nifty624, fantastic news! This as you said helps those of us going through this.

Hi @MadMed I keep thinking about you and wondering how things had worked out.

It's sometimes difficult to ask the question in case it's not the right answer, but I noticed your signature says you were due to have your follow up flex sig on 2/23. We are all hoping for some more good news.
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

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Thu Mar 03, 2022 8:23 am

Thanks prs, we’re doing one more MRI and sigmoidoscopy in 5 weeks. If that’s clear, they’ll put me on W&W.
I’m hopeful :D
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

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 Mar 03, 2022 9:35 pm

MadMed wrote:Thanks prs, we’re doing one more MRI and sigmoidoscopy in 5 weeks. If that’s clear, they’ll put me on W&W.
I’m hopeful :D

It's my experience the vast majority of doctors are ultra conservative when it comes to making treatment decisions, I think they are trained that way. It's very likely if your doctor had seen even the slightest trace of cancer, he would have recommended surgery.

I think this result is good news, and the odds of a CCR are definitely moving in your favor.
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

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

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

Postby MadMed » Fri Mar 04, 2022 9:58 am

You're right prs, this particular surgeon was talking about pelvic exenteration because the tumor was abutting my prostate. He's always been upfront about worst case scenario. I was seriously taken aback when he said W&W. I prefer it that way, i can prepare for the worst and be ready for anything.
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


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