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

Please feel free to read, share your thoughts, your stories and connect with others!
mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Sun Sep 17, 2017 9:55 am

I dont think anybody posted this link, where cCR went from 27% to 65% by increasing radiation to 5400cgy and adding more doses of 5fu plus leucovorin:

http://wolterskluwer.http.internapcdn.n ... 2_sdc1.mp4
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Tue Sep 26, 2017 2:27 pm

This is from ECCO2017 symposium, it's regarding "Watch and Wait strategy", where the most important thing is scope, intraluminally is where regrowth happen in 96% of cases, not the lymph nodes :
"So it’s not the lymph nodes, it’s not where the tumour recurs and again we try to say ‘regrowth’ because it’s not a recurrence but a regrowth of tumour cells and that’s surprising and of course very pleasant that it is intraluminal rather than in lymph nodes ..."

http://gastrointestinalcancer.elsevierr ... cer-update

These studies are based on chemo/rad only, not extra chemo after initial chemo/rad, but still important for W&W approach, by pointing where the focus should be.
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

skb
Posts: 31
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Wed Sep 27, 2017 2:42 pm

Thanks for all the articles mozart13.

And for those who are not familiar with the word intraluminal like me, it means, within the GI tract. So the regrowth mostly occurs within the rectum /colon and not in lymph nodes. The article says endoscopy is very important to detect regrowths
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from tumor location: no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left
8/11/17: starts wait and watch at Univ of Minn.
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
1/28/18 colonoscopy - no tumor
4/4/18 MRI -- no tumor still
6/13/18 Sigmoidoscopy- no tumor still

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Thu Sep 28, 2017 9:36 am

sreekanth wrote:Thanks for all the articles mozart13.

You wellcome!
My explaining was never good, my wife told me once that I couldn’t be teacher, LOL.

Cheers!
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

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

Postby JJH » Thu Sep 28, 2017 11:55 am

susie0915 wrote:... Is there another test that can pick up cancer cells other than pet scan or sigmoidoscopy ? ...

What about this one? Anyone ever had this test done?
https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/26176

mozart13
Posts: 136
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 Nov 06, 2017 1:38 pm

“New system for treating colorectal cancer can lead to complete cure”

http://ecancer.org/news/12729-new-syste ... e-cure.php
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Big Jay
Posts: 25
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

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

Postby Big Jay » Tue Nov 07, 2017 7:44 pm

A year ago I decided to go w/ W&W after I'd had a CCR. Went in last week for my 1yr scans and scope. Scans came back clear. Unfortunately there was a bit of cancer regrowth at the edge of the scar. So looks like a TME is in my not too distant future.

Knowing what I did at time that I made the W&W call I still think I made the right decision for me... all of us have to weigh the risks and be comfortable w/ our choices. At the time, all information I had access to, claimed that the dreaded cancer only comes back in 20% or less of the time after a CCR. So, 80% chance of not needing surgery seemed worth it to me. I also had no doubt that, should it reappear, I wouldn't hesitate to have the surgery.

I do regret listening to my oncologist's insistence that I did not need to get chemo. Would chemo have made the difference and prevented this regrowth? I have no idea and I never will.

According to my surgeon he has about a dozen patients on W&W and almost 50% of them have had a regrowth. Some had chemo, some didn't. Now, would I have make the same call for W&W knowing I had a 50/50 chance of failure? I'm not so sure.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Tue Nov 07, 2017 9:45 pm

Sorry to hear that regrowth happen Big Jay.
It is unfortunate that there is no standard procudure. Each practicioner has own opinion and practice, and is luck of draw whom one gets.
I am dealing with 3 hospitals, 4 doctors, and they all have different opinions, my Radiologist thought that was over killing to have radiation for my stage, my second surgeon that was suppose to do surgery didn’t think that I need chemo, specially not so many rounds.

Stay positive, I know it’s easy to say, past you can’t change, you alerady had excellent reaction to chemo/rad, no methastasis happen, just local regrowth intra luminaly, that is very salvagable.

All the best!
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Big Jay
Posts: 25
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

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

Postby Big Jay » Sun Nov 12, 2017 7:47 pm

Oh, I'm well aware of the lack of a proper controlled study on this W&W thing. I posted this mainly to get the word out that the chance of regrowth might be a bit higher than the 20-ish percent that the non-scientific studies have shown.

I do not regret my decision to pursue W&W. From all I've read the odds of a regrowth are/were worth the risk... However I will again emphasize that it was worth it to me... We all have to make our own call and make our own decisions as to what risks we're willing to tolerate.

In my case my roll of the dice came up snake eyes. Best as I can tell, at worst, this puts me back where I started a year ago. When I made the call I swore that, should there be any sign of regrowth, I'd go for the TME. So, that's the way I'm going to go.

In a weird sort of way I'm more comfortable w/ the impending surgery than I was when I had the CCR. I remember thinking about how pissed I would be if I'd had the surgery, found that I'd had a PCR, and then crapped my pants for the rest of my life when I probably hadn't needed the surgery.

I am also trying to find a silver lining to this brown cloud. If my sole purpose in life is to serve as a warning to others I want to get that warning out there. I'm trying to figure out how to get my experience recorded as part of the international W&W database. It's not a controlled experiment but the more data from actual patients the better.

Of course I can't help but thinking that we're all on the edge of some sort of medical breakthrough. I'm hoping that in 10yrs the whole "cut it all out" strategy will be viewed w/ the same contempt that as we view leeching and "ill humors" today.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

prs
Posts: 115
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 » Mon Nov 13, 2017 9:53 am

Big Jay, so sorry to hear about your recurrence. I agree the absence of a standard protocol for W&W is a big problem.

I don't know if there is any data showing the recurrence rate with and without mop-up chemotherapy, but both posters with recurrence in this thread were not offered chemo. I know my surgeon was very insistent that I begin chemo asap after she determined I'd had a complete clinical response.

I do think going forward that anyone considering W&W should definitely insist on follow up chemotherapy as part of their treatment plan.
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

User avatar
susie0915
Posts: 838
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Nov 13, 2017 2:43 pm

I still say I probably would've done wait and watch if offered. After radiation/chemo surgeon did sigmoidoscopy and said only scar tissue left, and pet scan was clear. Didn't think I would need chemo after surgery. I was happy about that, but if he would've said you can opt to wait and watch I think I would've done that. As it turned out the pathology report after surgery showed residual minimal cancer, so I did chemo. How is it determined that you had complete response? Hopefully, as it is offered more, they will come up with a standard protocol. It really would be a game changer for so many patients. If they can avoid removal of most of their rectum.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Tue Nov 14, 2017 4:42 pm

“A cCR was defined as absence of residual tumor, ulceration, or rectal wall irregularity on both clinical and radiologic assessment. Radiologic features of cCR included presence of residual low-signal intensity and absence of restriction to diffusion on MRI, or absence of residual FDG avidity in the rectal wall on PET/CT. “

https://www.frontiersin.org/articles/10 ... 00286/full
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Sun Nov 19, 2017 3:41 pm

Consolidation chemotherapy after chemo/rad showed very promising results:

“. Patients treated with consolidation CRT had increased rates of complete clinical or pathological response (66 % vs. 23 %; p < 0.001”

“ In fact, the recently reported phase II trial suggests that the more additional chemotherapy, the higher chance of complete tumor regression and therefore, lesser chance of tumor cell repopulation [22]. Considering this latter study, there is a chance that not only the addition of oxaliplatin but also the use of more modern 5FU delivery options (oral or infusional) instead of bolus infusion used in our study, could contribute to increase response rates and block tumor cell repopulation.”

https://www.ncbi.nlm.nih.gov/pmc/articl ... po=10.8696
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 forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Rikimaroo
Posts: 135
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Sun Nov 26, 2017 11:14 pm

Add me to the statistic of a W&W patient that has a recurrence in the same spot :(...I also did not do mop-up chemo thinking it was over especially since chemorad was already done. Meet with my surgeon tomorrow to discuss next steps. MRI scheduled for Wednesday so he is probably going to wait for that to make a decision. Flex Sig showed tumor same spot at 2cm at 12cm from anal verge give or take.

My surgeon wants to do a temp ileo from the last time we spoke, but being that it is so high up I am not sure why, but he said he doesn't want to risk leak. my radiation oncologist said he is not sure why I would need a temp ileo especially since I am young and have very healthy tissue. Either way I am going to do whatever my surgeon tells me to do. It's crazy as I did a flex sig in August and no tumor, biospy done NED....good news is No pelvic lymphadenopathy, hopefully this MRI on Wednesday 11/28 same result for the lymph nodes, cut this sucker out and move on with my life.

The next thing is should I do chemo after surgery, even if I am pCR. Very difficult. Cancer really stinks. I was hoping this will all go away, but you will never know if I did mop-up chemo or not if it would of kept it away. Anyways no sense beating ourselves up over that decision of mop-up chemo.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

User avatar
susie0915
Posts: 838
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Nov 27, 2017 9:32 am

I'm sorry to hear about your recurrence. Wondering if you would've done chemo could have made a difference is tough to go through. It's tough to have to go through surgery now, but it'll be taken out. I know my surgeon told me I may not need chemo after surgery as all that was left was scar tissue after chemo/radiation. There was some minimal residual cancer cells so oncologist recommended chemo. She didn't want me to wonder "what if" if I didn't do it even though there was only a 10% chance of recurrence. She couldn't guarantee cancer cells didn't get into blood stream. So chemo may be recommended for you this time after surgery. Good luck with your meeting with your surgeon.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 47 guests