Is W&W an option for a partial response

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cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Is W&W an option for a partial response

Postby cucaracha » Sat Oct 17, 2020 4:49 pm

Hello all,

I'd like to know if there has been other members who have chosen a wait & watch approach based on a partial response? I know some people don't even want to take a chance. I would like to have all options on the table before making a life changing decsion.
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge.
6/21/20, I finished my neoadjuvant therapy.
08/04/20, MRI showed "Interval decrease in size of rectal mass. Persistent but less extensive irregularity seen at the right posterior aspect of rectal muscularis propria, may represent posttreatment changes. No suspicious mass is seen."
08/19/20, sigmoidoscopy, the surgeon couldn't visually see anything. He recommended a Lower Endoscopic Ultrasound EUS.
09/23/20, EUS with fine needle aspiration.
9/24/20, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
Rectal wall thickening, endoscopic ultrasound-guided FNA biopsy:
Scant benign muscularis propria and reactive rectal glandular cells.
Comment: Definitive evidence for glandular dysplasia or carcinoma is not identified in this FNA sample. Clinical and radiologic correlation is recommended.

I am scheduled for a LAR w/ TME.

Thx, Eric
Last edited by cucaracha on Sat Oct 17, 2020 10:55 pm, edited 1 time in total.
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: Is W&W

Postby NHMike » Sat Oct 17, 2020 9:03 pm

There was a lot of discussion of W&W here back in 2018 as many were doing clinical trials with it but my recollection is that they were all Stage 2. I did not follow it that closely because I had my LAR in 2017. I imagine that it's more of a routine thing for Stage 2 patients today.

I was Stage 3B and had a large tumor that shrank over 90% but it was still 6-8 CCs after Neoadjuvant and this was before W&W was widely known so I went to have surgery. I had a quick read of a few papers and a lot has been learned since 2018 and the complexity of when it should be an option along with the kinds of surveillance makes for complicated treatment. As far as I can tell, the major risk in this approach is metastasis. If there is local recurrence, then you can always have surgery. But if it spreads, then treatment becomes a lot more complicated.

https://www.wjgnet.com/1007-9327/full/v26/i29/4218.htm

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422545/

It looks like the Ultrasound detected the adenocarcinoma but the biopsy didn't collect any. One of the papers indicated that it could be suitable for cCR or near cCR but I didn't look to see what "near" meant. If I personally had adenocarcinoma, I would want to get it out of there as it will only grow. Unless there was some other approach, like additional radiation, that could get rid of it completely.

I assume that you know about the potential QoL with the LAR - I can describe them but suffice it to say that you don't want LARS. Not everyone gets LARS but the adjustments are significant if you do.

Did you talk this over with your oncologist and surgeon? I'm curious as to what they said if they offered this as an option.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Lee
Posts: 6164
Joined: Sun Apr 16, 2006 4:09 pm

Re: Is W&W

Postby Lee » Sat Oct 17, 2020 9:50 pm

While it is a bit long, it is several years of input from different people on this forum. Maybe something to look at when you have the time.

viewtopic.php?f=1&t=53498

Hope it helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Re: Is W&W an option for a partial response

Postby cucaracha » Sat Oct 17, 2020 11:10 pm

Thank you. I'll take a read.

-Eric
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled

roadrunner
Posts: 62
Joined: Sun Jan 12, 2020 8:46 pm

Re: Is W&W an option for a partial response

Postby roadrunner » Sat Oct 17, 2020 11:42 pm

I’m interested in this topic. I have been told I have a cCR after TNT, but what remains is not the flat white scar that most typifies a cPR but a flat reddish area with no palpable tumor. Prior to four additional cycles of FOLFOX, MRI suggested a “near cCR,” but was inconclusive. Biopsy was negative. Seems like it’s right on the line, makes decisioning tough. My surgeon has recommended a TAE to test the scarred area.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Re: Is W&W an option for a partial response

Postby cucaracha » Sun Oct 18, 2020 12:37 pm

@NHMike

Thank you for sharing your history. It puts it in a better perspective for me.

I thought the ultrasound would designate the area for the FNA? How does that work when the ultrasound comes back positive for cancer and the FNA does not? This is probably why I had a hard time interpreting the pathology report. I just asked my PCP to go over it with me next week.

Yeah, I can see that if the cancer came back, I could potentially be in a dangerous predicament. My radiation oncologist has told me I have received the maximum amount of radiation for that location in my body.
Yes, I am certainly aware of the QoL with the LAR and the syndrome. That's why I am trying to avoid the radical treatment. I met with my surgeon this past Friday to go over the details once again for my surgery. Also, it was another opportunity for him to specify how much of my rectum he would take (2/3). He also said the surgery won't affect my prostate due to the location of the excision.

I haven't asked any of my doctors yet if I could do W&W. I have asked if there was anything else we could do, but they said no. Why wouldn't a TAE be an option now? I didn't see anywhere on my pathology or MRI the depth of the tumor at its current reduced state. My original MRI from 1/07/20 listed the tumor has 3mm beyond the rectal wall.

Thanks for the insight, Eric
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: Is W&W an option for a partial response

Postby NHMike » Sun Oct 18, 2020 1:01 pm

cucaracha wrote:@NHMike

Thank you for sharing your history. It puts it in a better perspective for me.

I thought the ultrasound would designate the area for the FNA? How does that work when the ultrasound comes back positive for cancer and the FNA does not? This is probably why I had a hard time interpreting the pathology report. I just asked my PCP to go over it with me next week.

Yeah, I can see that if the cancer came back, I could potentially be in a dangerous predicament. My radiation oncologist has told me I have received the maximum amount of radiation for that location in my body.
Yes, I am certainly aware of the QoL with the LAR and the syndrome. That's why I am trying to avoid the radical treatment. I met with my surgeon this past Friday to go over the details once again for my surgery. Also, it was another opportunity for him to specify how much of my rectum he would take (2/3). He also said the surgery won't affect my prostate due to the location of the excision.

I haven't asked any of my doctors yet if I could do W&W. I have asked if there was anything else we could do, but they said no. Why wouldn't a TAE be an option now? I didn't see anywhere on my pathology or MRI the depth of the tumor at its current reduced state. My original MRI from 1/07/20 listed the tumor has 3mm beyond the rectal wall.

Thanks for the insight, Eric


I think that an MRI would be able to provide far more detail than a handheld ultrasound but I imagine the cost and time are far greater. My surgeon used MRIs for diagnosis and planning. You'd have a pathologist read the MRI output and write up a path report. I don't know what the process is for an ultrasound but I'll probably get one at the my next surgeon meeting.

I didn't have prostate issues but a different male issue and I think that it was a result of the ureter stents. I've run into a number of other guys that had the same problem after surgery. It's possible that it could be fixed but I haven't looked into it. The idea of another round of doctors and procedures isn't palatable.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Phillypatient
Posts: 39
Joined: Sun Aug 05, 2018 11:28 am

Re: Is W&W an option for a partial response

Postby Phillypatient » Sun Oct 18, 2020 8:24 pm

At MSK, the doctor there suggested to do the chemotherapy before surgery because they have observed complete clinical response in patients that have residual tumors post radiation. You are going to have to do the chemo anyway. I’d much happier I did it pre surgery when I functioned normally. Doctor Aguilar is the head of colorectal surgery and head of the study. It’s worth a shot. They’ve also written some papers for the layman to read. I would do anything I could to avoid the surgery if possible.

Good luck and feel free to ask questions
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Re: Is W&W an option for a partial response

Postby cucaracha » Sun Oct 18, 2020 11:43 pm

@ Phillypatient

Actually, I already did 8 rounds of chemo before my radiation.
I will look into MSK.

Thx, A
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled

Phillypatient
Posts: 39
Joined: Sun Aug 05, 2018 11:28 am

Re: Is W&W an option for a partial response

Postby Phillypatient » Mon Oct 19, 2020 8:28 pm

My mistake. I just read your profile. You did it the way they would have done it ideally. My feeling is to get a second from Dr Aguilar-Garcia. He’s a great guy to speak to about your situation and he is an excellent second opinion option. If you can avoid surgery, he’s the guy who is most in favor of avoiding surgery.

Good luck!
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Re: Is W&W an option for a partial response

Postby cucaracha » Mon Oct 19, 2020 10:09 pm

@Phillypatient

I spoke to MSK today. Since I live in California, they recommended a hospital from the NCI network. It just so happens UCSF is very close to me. I tried calling numerous times and even left a message. But no one got back to me. Luckily I had a phone meeting with my PCP to go over my pathology report. I told him I would like a 2nd opinion, and he sent in the referral as a rush. I guess it's a good sign when the hospital is so hard to get a hold of anyone.
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: Is W&W an option for a partial response

Postby NHMike » Tue Oct 20, 2020 4:22 am

cucaracha wrote:@Phillypatient

I spoke to MSK today. Since I live in California, they recommended a hospital from the NCI network. It just so happens UCSF is very close to me. I tried calling numerous times and even left a message. But no one got back to me. Luckily I had a phone meeting with my PCP to go over my pathology report. I told him I would like a 2nd opinion, and he sent in the referral as a rush. I guess it's a good sign when the hospital is so hard to get a hold of anyone.


I had this problem three years ago with Dana Farber and Brigham and Womens. It took us two weeks to set up appointments. My local doctors office was calling as was I. I was tempted to go down and try to get appointments (the hospitals were an hour away). Once through the induction process, though, it was easy to set up further appointments. There is a lot of demand for cancer services.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

prayingforccr
Posts: 51
Joined: Sun Jun 28, 2020 4:44 pm

Re: Is W&W an option for a partial response

Postby prayingforccr » Wed Oct 21, 2020 6:51 pm

Phillypatient wrote:At MSK, the doctor there suggested to do the chemotherapy before surgery because they have observed complete clinical response in patients that have residual tumors post radiation. You are going to have to do the chemo anyway. I’d much happier I did it pre surgery when I functioned normally. Doctor Aguilar is the head of colorectal surgery and head of the study. It’s worth a shot. They’ve also written some papers for the layman to read. I would do anything I could to avoid the surgery if possible.

Good luck and feel free to ask questions


I have been/am being treated by msk.

We did 5 weeks crt (radiation/capecetabine/m3814) and I just completed my 8th round of folfox.

I took 5 weeks In between CRT and chemotherapy.

All actions were done with giving me the best chance to achieve a pcr or ccr and avoid a colostomy.

I believe this is the new standard of care going forward.

crt, then folfox/then surgery (if needed)

I am to have a colonoscopy next week to see if there is any persistent disease.

The tumor was at least 85% dead/necrotic after my first folfox session.

I am PRAYING for a ccr.

I have NO IDEA what the gameplan might be if there is a near ccr and a small amount of tumor remaining.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatmentsFOLFOX
August 2021: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2021: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy scheduled first week of december.

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: Is W&W an option for a partial response

Postby NHMike » Wed Oct 21, 2020 6:58 pm

prayingforccr wrote:
Phillypatient wrote:At MSK, the doctor there suggested to do the chemotherapy before surgery because they have observed complete clinical response in patients that have residual tumors post radiation. You are going to have to do the chemo anyway. I’d much happier I did it pre surgery when I functioned normally. Doctor Aguilar is the head of colorectal surgery and head of the study. It’s worth a shot. They’ve also written some papers for the layman to read. I would do anything I could to avoid the surgery if possible.

Good luck and feel free to ask questions


I have been/am being treated by msk.

We did 5 weeks crt (radiation/capecetabine/m3814) and I just completed my 8th round of folfox.

I took 5 weeks In between CRT and chemotherapy.

All actions were done with giving me the best chance to achieve a pcr or ccr and avoid a colostomy.

I believe this is the new standard of care going forward.

crt, then folfox/then surgery (if needed)

I am to have a colonoscopy next week to see if there is any persistent disease.

The tumor was at least 85% dead/necrotic after my first folfox session.

I am PRAYING for a ccr.

I have NO IDEA what the gameplan might be if there is a near ccr and a small amount of tumor remaining.


Hoping that you have the best of results.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

cucaracha
Posts: 6
Joined: Sat Oct 17, 2020 1:45 pm

Re: Is W&W an option for a partial response

Postby cucaracha » Wed Oct 21, 2020 9:29 pm

prayingforccr wrote:
Phillypatient wrote:At MSK, the doctor there suggested to do the chemotherapy before surgery because they have observed complete clinical response in patients that have residual tumors post radiation. You are going to have to do the chemo anyway. I’d much happier I did it pre surgery when I functioned normally. Doctor Aguilar is the head of colorectal surgery and head of the study. It’s worth a shot. They’ve also written some papers for the layman to read. I would do anything I could to avoid the surgery if possible.

Good luck and feel free to ask questions


I have been/am being treated by msk.

We did 5 weeks crt (radiation/capecetabine/m3814) and I just completed my 8th round of folfox.

I took 5 weeks In between CRT and chemotherapy.

All actions were done with giving me the best chance to achieve a pcr or ccr and avoid a colostomy.

I believe this is the new standard of care going forward.

crt, then folfox/then surgery (if needed)

I am to have a colonoscopy next week to see if there is any persistent disease.

The tumor was at least 85% dead/necrotic after my first folfox session.

I am PRAYING for a ccr.

I have NO IDEA what the gameplan might be if there is a near ccr and a small amount of tumor remaining.


Yeah, best of luck.
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, diagnosed as Stage IIIA rectal cancer, T3N1. 5.8cm from anal verge
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 - chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 - EUS, Pathology, FINAL MICROSCOPIC DIAGNOSIS: 6-7cm from anal verge.
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 - LAR, TME scheduled


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