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

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prs
Posts: 103
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 Jul 31, 2017 7:15 am

Had my annual colonoscopy last week and everything looked good, so two years NED at this point. :D My follow up appointments now go from quarterly to every six months.

I know everyone has to make their own decision but "Watch and Wait" is certainly working out well for me.
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

mozart13
Posts: 72
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 Jul 31, 2017 3:07 pm

Congrats, thats great news!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

User avatar
Maia
Posts: 2414
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Mon Jul 31, 2017 3:29 pm

Huge congrats, prs, that is awesome!

mozart13
Posts: 72
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 Aug 03, 2017 5:08 pm

Study that compares cCR and pCR:
ABSTRACT

A wait-and-see policy might be considered instead of surgery for rectal cancer patients with no residual tumor or involved lymph nodes on imaging or endoscopy after neoadjuvant chemoradiotherapy (clinical complete response, cCR). In this cohort study, we compared the oncologic outcomes of rectal cancer patients with a cCR who were managed according to a wait-and-see policy (observation group) or with surgery (surgery group). In the observation group, follow-up was performed every 3 months for the first year and consisted of MRI, endoscopy with biopsy, computed tomography and transrectal ultrasonography. In the surgery group, patients received radical surgery. Long-term oncologic outcomes were estimated using Kaplan-Meier curves. Thirty patients were enrolled in the observation group (median follow-up, 60 months; range, 18-100 months), and 92 patients were enrolled in the surgery group (median follow-up, 58 months; range, 18-109 months). The 5-year disease free survival and overall survival rates were similar in the two groups: 90.0% vs. 94.3% (P = 0.932) and 100.0% vs. 95.6% (P = 0.912), respectively. We conclude that for rectal cancer patients with a cCR after neoadjuvant chemoradiotherapy, a wait-and-see policy with strict selection criteria, follow-up and salvage treatments achieves outcomes at least as good as radical surgery. Additionally, we declare that the pCR (pathologic complete regression) and non-pCR subgroups of patients with a cCR have similar long-term failure (local recurrence and/or distant metastasis) rate.

Link:
http://www.impactjournals.com/oncotarge ... 5B%5D=6093

Also here is the study that shows difference when people recieve 2, 4 and 6 rounds of folfox after chemo/rad treatment page 92-94:
http://oncologypro.esmo.org/content/dow ... Cancer.pdf
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

ret
Posts: 2
Joined: Sat Feb 25, 2017 1:09 pm

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

Postby ret » Thu Aug 03, 2017 10:21 pm

Hello. Here with Wait/Watch personal update. Spouse with stage 4 rectal CA with liver mets had complete-clinical response to treatments. Opted to W/W, hoping to avoid the pelvic surgery w permanent ostomy.
Then... Very First CT/PET surveillance at 3 mo, showed hot lymph node, -which mandated the surgery. Now 2 weeks post APR and the path report shows invasive perirectal involvement with circumreferential radial margin involvement. Yech.
--While the team had said the APR surgery wasn't to "cure" the CA, I don't think we really 'registered' that it was really intended more as a "Palliative" surgery. Anyway, Now we're pretty worried.
We're waiting to see the Oncologist, and learn about treatment options and goals.
All of the posts are so helpful and generate hope for us.
Best
Ret

mozart13
Posts: 72
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Sat Aug 05, 2017 2:26 pm

Sorry to hear about your spouse ret, dont really know what to say, except hope that your spouse gets well.
This is teriblle disease, one never knows when is going to strike, W&W approach, surgical approch, neither approach gives reassurance, one might think if I took other road things might look different, but who knows, surgical approach is still king, but those people get distant mets as well. People that have reassurance are the one that have pCR, after surgery, that seem only valid reassurance to me.
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby sreekanth » Tue Aug 15, 2017 4:32 pm

I have not posted in this forum in a while but I thought it was important to share some updates so that it could be useful for other patients.
My chemoradiation therapy ended on May 22nd 2017. Since June 2017, I have been having normal bowel movements. I had several imaging studies as well as a pathology study done to evaluate the tumor response.
June 26: Blood tests for genetic propensity for colorectal cancer retruns negative results for all 18 genes in the panel. This was initiated by my cancer team at Minnesota Oncology. The blood sample was sent to a lab in California.
June 28, 2017 (5 weeks after completion of chemoradiation): MRI Scan:
Approximately 10% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of 2. No suspicious lymphadenopathy.

June 30, 2017: Flexible Sigmoidoscopy with biopsy:
A nodule/bump was all that remained in the place where the tumor used to be. A biopsy of deep tissue from where the tumor used to be revealed no evidence of adenocarcinoma.

August 7, 2017: (10 weeks after completion of chemoradiation): MRI Scan:
Approximately less than 5% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of mrTRG-2.

August 9, 2017: (10 weeks after completion of chemoradiation): MRI Scan and PET scans as part of a study at Mayo clinic:
MRI report: No evidence of primary tumor. No evidence of distal metastasis
August 11, 2017: Oncologist at University of Minnesota Masonic Cancer Center calls the above reports an excellent response and places me in Wait and Watch Program if I am interested. I choose the Wait and Watch program after understanding risks and after signing up for an intensive follow up program.
August 17, 2017: Mop-up Chemotherapy to start. IV infusion of Folfox with Oxaliplatin. Every two weeks for approximately 5 months.

USEFUL INFORMATION FOR OTHER PATIENTS
========================================
1) Wait Period between completion of neoadjuvant therapy and surgery or evaluation for surgery:
Just by looking at my case, it appears that the chances of a complete tumor erasure are better if we wait longer after the completion of neoadjuvant chemoradiation. Some physicians recommend a waiting period of 4 weeks, some 5 weeks, the landmark Habr-Gama trial kept a waiting period of 8 weeks and some places wait about 10 weeks or more. There are studies going on regarding this. At least in one research paper, I read that the chances of tumor responding to neoadjuvant chemoradiation diminish after 10 to 12 weeks of completion of neoadjuvant chemoradiation. I was evaluated at 5 weeks and also at about 10 to 11 weeks.

2) University of Minnesota Masonic Cancer Center offers Wait and Watch Program for select patients with excellent response to neoadjuvant chemoradiation. There is not much information available online as to which Cancer Centers in the US offer this treatment. It is rare because it is not yet Standard of Care in the United States. It is probably the standard of care for complete responders in the hospital in Sao Paulo, Brazil where this method was pioneered. It is also offered as a choice to patients in the UK who are complete responders (read an online NHS pamphlet about it). In UK, it is called active surveillance. The patient is offered the choice, to either go for radical surgery or be on active surveillance. As far as I know, these are the centers in North America offering Wait and Watch program for patients with "complete response" (no consensus exists on what it is or how to measure complete clinical or pathological response)
- Memorial Sloan Kettering in NY
- Kaiser facility in Sunset Blvd. (CA)- this is where the user prs is having his treatment
- Some hospital in Toronto, Canada- )- this is where the user mozart13 is having his treatment
- Masonic Cancer Center, University of Minnesota, Minneapolis, MN- )- this is where the user sreekanth is having his treatment
- University of Rochester Medical Center in Rochester, NY

Memorial Sloan and the Rochester, NY hospital are the only ones in the US that are part of the International Wait and Watch Database

3) It is important to note that Wait and Watch is a risky approach and every patient who is offered this program has to decide what is best for them. I am not advocating one way or the other. Considering my situation, my genetic test results, I decided to take the risk. Rigorous follow up is key. It is important to detect reccurrences early so that there could be emergency salvage surgery. I am just sharing information here for the benefit of other patients


4) Being active, eating healthy seems to improve chances of response to treatment:
While I was waiting after my neoadjuvant chemoradiation, I asked lucky folks like prs and mozart13 whether they ate a special diet or had special exercise regimen that helped them get to complete response. prs used to walk regularly. My oncologist also recommends that. I can't say that I walked every day in the last 3 months for 30 mins. But I tried to lead a normal lifestyle. Went to work, picked up kids, cooked dinner every night for my family, played with my kids when I could make time. I was active. My wife prepared a cocktail juice of carrots, celery and ginger and she made me drink a mug of that daily. We do not know if that helped for sure but carrots and celery can't be bad for you.

I am curious as to how other complete responders like prs, mozart13 and Rikimaroo are doing. Please post if time permits. You are the ones who gave me hope.

Peace!

---------------------

Dx 3/21/17- T3N0M0- distal rectal cancer, 5cm tumor, adenocarcinoma, 2.5 cm from anal verge, slight internal sphincter involvement
4/18/17 to 5/22/17: Simultaneous chemo and radiation - oral pills- Xeloda 1800mg twice a day for 25 days, 200 Cgy radiation per day totaling 50Gy for 25 days
6/28/2017: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/11/17: deemed complete responder, placed in wait and watch
8/17/17: starting mop-up chemo with Folfox and oxaliplatin (IV infusion)
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

prs
Posts: 103
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 Aug 16, 2017 10:21 am

Congratulations sreekanth !!!!

It's good that you are getting mop-up chemo, mozart13 posted a study a couple of weeks ago that indicates it plays a big part in reducing the risk of recurrence.

I had an appointment last week with one of my local Doctors and he surprised me by saying he was seeing more and more positive data on W&W, and expected it would become an approved treatment in a year or two.
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

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby sreekanth » Wed Aug 16, 2017 2:34 pm

Peter,
Thanks for the wishes and also the update about your situation.

Sree


----------------------------
Dx 3/21/17- T3N0M0- distal rectal cancer, 5cm tumor, adenocarcinoma, 2.5 cm from anal verge, slight internal sphincter involvement
4/18/17 to 5/22/17: Simultaneous chemo and radiation - oral pills- Xeloda 1800mg twice a day for 25 days, 200 Cgy radiation per day totaling 50Gy for 25 days
6/28/2017: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI study at Mayo reveals no primary tumor left
8/11/17: deemed complete responder, placed in wait and watch
8/17/17: starting mop-up chemo with Folfox and oxaliplatin (IV infusion)
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

prs
Posts: 103
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 Aug 16, 2017 7:38 pm

Sree, lots of good information in your post, thank you for contributing to the thread. I think it's very important to note it took the full ten weeks for your tumor to finish shrinking.

We often see people who have their surgery only six weeks after radiation and that's too soon!!!
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

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby sreekanth » Sat Aug 19, 2017 12:43 pm

Yes, the wait period between neoadjuvant chemoradiation and surgery now ranges between 4 weeks and 8 weeks across the US. (based on information posted by patients here). Not any longer.

This is because the intent of chemoradiation does not seem to be to cure or kill the tumor completely but only to shrink it to a size that could make surgery easy. The current standard of care relies on surgery as the primary treatment and chemo, radiation as its bridesmaids.

I doubt if MRI imaging prior to surgery is part of the current standard protocol.However it is crucial for non operative management.

In my earlier post, i accidentally forgot to list the wait and watch centers (international wait and watch consortium) outside the US. They are available here.

http://www.iwwd.org/participation-centres/
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

NHMike
Posts: 326
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Aug 19, 2017 2:05 pm

sreekanth wrote:Yes, the wait period between neoadjuvant chemoradiation and surgery now ranges between 4 weeks and 8 weeks across the US. (based on information posted by patients here). Not any longer.

This is because the intent of chemoradiation does not seem to be to cure or kill the tumor completely but only to shrink it to a size that could make surgery easy. The current standard of care relies on surgery as the primary treatment and chemo, radiation as its bridesmaids.

I doubt if MRI imaging prior to surgery is part of the current standard protocol.However it is crucial for non operative management.

In my earlier post, i accidentally forgot to list the wait and watch centers (international wait and watch consortium) outside the US. They are available here.

http://www.iwwd.org/participation-centres/


My surgeon asked me to get an MRI the week after my chemo/radiation finishes for planning purposes. I was wondering why she didn't ask for it closer to the surgery but I guess that the chemoradiation keeps working so things should get easier with time from the MRI that she requested.
Mike in NH:
Rectal Bleeding biopsy June 23, 2017, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Chemo (Xeloda) and radiation from 07/31/17 to 09/08/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9 to 1.8 after treatment.
KRAS Mutant KRAS p.Gly12Asp

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby sreekanth » Sat Aug 19, 2017 2:20 pm

Mike NH,
If I were you and if I were interested in non operative management, I would request the provider to have the MRI taken at 8 weeks after completion of chemoradiation or even ten. Eight weeks was the time used in the landmark Habr Gama study.

For some people, tumor regression stops after some time and it starts growing back. That seems to be the reason why some surgeons are eager to cut it off while it is still small, manageable.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

prs
Posts: 103
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 » Sat Aug 19, 2017 6:28 pm

At Kaiser they wouldn't even give me an appointment until six weeks after radiation ended. I was told any earlier my rectum would be too swollen and inflamed from the radiation for them to make a good determination of the results. It was the longest six weeks of my life!! That appointment was a physical rectal exam with a scope and they took photos of the scar tissue remaining at the site of the tumor. It was here that I was told I'd had a complete clinical response. They did schedule an MRI to confirm that determination but it didn't happen until the 9th week. I started chemo at 10 weeks.

Mike, is your surgeon a board certified colorectal surgeon?
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

Basil
Posts: 156
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Sat Aug 19, 2017 7:07 pm

I had my last round of preadjuvant chemo 6/26 and my MRI on 7/13 showed 80% regression. I had LAR on 7/31 with a path complete response. Trains left the station on the surgical question for me but, unless something was wonky with the MRI, the lingering FOLFOX killed the remaining 20% of my tumor between 7/13 and 7/31.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
NED
adjuvant chemo cancelled.
reversal scheduled 9/25/17


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