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Is W&W an option for a partial response

Posted: Sat Oct 17, 2020 4:49 pm
by cucaracha
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

Re: Is W&W

Posted: Sat Oct 17, 2020 9:03 pm
by NHMike
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.

Re: Is W&W

Posted: Sat Oct 17, 2020 9:50 pm
by Lee
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

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

Posted: Sat Oct 17, 2020 11:10 pm
by cucaracha
Thank you. I'll take a read.

-Eric

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

Posted: Sat Oct 17, 2020 11:42 pm
by roadrunner
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.

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

Posted: Sun Oct 18, 2020 12:37 pm
by cucaracha
@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

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

Posted: Sun Oct 18, 2020 1:01 pm
by NHMike
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.

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

Posted: Sun Oct 18, 2020 8:24 pm
by Phillypatient
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

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

Posted: Sun Oct 18, 2020 11:43 pm
by cucaracha
@ Phillypatient

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

Thx, A

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

Posted: Mon Oct 19, 2020 8:28 pm
by Phillypatient
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!

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

Posted: Mon Oct 19, 2020 10:09 pm
by cucaracha
@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.

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

Posted: Tue Oct 20, 2020 4:22 am
by NHMike
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.

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

Posted: Wed Oct 21, 2020 6:51 pm
by prayingforccr
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.

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

Posted: Wed Oct 21, 2020 6:58 pm
by NHMike
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.

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

Posted: Wed Oct 21, 2020 9:29 pm
by cucaracha
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.