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

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lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Wed Feb 13, 2019 12:04 pm

Thanks, PRS, for your perspective. Good reminders - esp about salvage surgery.

My surgeon was recruited here from MSK and my facility is a W&W facility. They have been gung ho on the W&W since I started (TNT) treatment. The fat plane paused all that.

My scan is tonight. I also have appt scheduled @MSK next Wed (rescheduled from this week due to weather). We will see if anything has changed but my hopes is just that it hasn’t returned during this last month of waiting....
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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 Feb 13, 2019 11:51 pm

Please don't fret about your month of waiting. I believe it was pretty much standard practice for Dr Habr-Gama's patients to wait 12 weeks before she determined if they'd had a CCR.
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

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Feb 14, 2019 9:34 am

Hi Lakeswim - my response in blue !!!

lakeswim wrote:
Hi Jolene. You are in the same boat as I am - just a few weeks behind. My (apparently BULKY) tumor completely disappeared on MRI 6 weeks post chemorad (it had already reduced significantly after chemo, which I did first) and the flex sig and digital exams both show no tumor. (I had no PET scan or biopsy.)

I did not do flex sig after 6 weeks. It was only based on anal check (completely disappeared) and MRI (specks of residual). I am due in another 6 weeks when a flex sig, pet scan, biopsy AND MRI will be ordered again. I think you could have more tests done after another 6 weeks as 12 weeks is the crucial determining factor for the WW !

But my fat plane (between rectum and uterus) is indistinct so there could still be something there. So the Tumor Board here said NO cCR (just based on fat plane) and their official recommendation is surgery. They did offer me to wait from mid Jan to this week to allow radiation to work and scheduled an MRI here at home for tomorrow - to see if anything changes (they told me that they don't anticipate it will).

I have read that you mentioned the fat plane issue a number of time - but thoughout all this while my docs have never mentioned it once ! :?:

Meanwhile, I scheduled a second opinion @ MSK for this week (they are at the forefront of W&W) but my flight was cancelled. (Ugh.) So,I will get my MRI here tomorrow night and maybe get my second opinion next Wed (the next available @MSK)- but I really am uncomfortable waiting. Or, rather, at this point, I just want to get this show on the road. So I don't know.

The wait can be excruciating. The last 6 weeks was horrendous for me. While I am feeling hopeful for another 6 weeks as thats means I am holding out to be a ww candidate and might just be able to get away without surgery and LARS symtpoms, I'm also concerned that it's going to get to me psychologically and mentally once more while waiting out. I have been seeing a counselor on the side and that has been helping a lot in between the wait. Do you have any support from anyone else on the mental/emotional/psychological side of things ?

Initially, I thought W&W was crazy. After going through chemorad and all the unpredictable bathroom issues from the Xeloda, I decided I couldn't live that way and decided W&W is for me. Then tumor board said "NO W&W - YES SURGERY" and I was upset. But now that I've read through many posts here and Julie Y-W's blog, I am back to being afraid of W&W and resigned to the surgery. Come what may, at least surgery increases my chance of living, lessens my chance of recurrence. At what cost, I don't know, but I am trying to make my peace with that. (We will see how the MRI goes, but that's how I'm thinking today.)

Could you direct me tot his Julie Y blog ? I tried seraching on the Colon blog but couldn't find any !

I dread the idea of surgery and LARS at the beginning too. In fact I have a separate thread on that and how the thought of surgery is affecting me mentally. I have the help of a counselor on my end since to help process those dreadful thoughts and have gradually make my peace that I will have to accept surgery in the event of a less than ideal results in 6 weeks. I also kept reminding myself that there are people in other parts of the world who are dying to have surgeries and are unable to have it for various reasons. The opportunity to have surgery option laid out for us is in itself a privilege and a fortunate position to be in.


Lastly, Jolene, I just wonder about the distinct fat plane thing (not sure this applies to you, but FYI). I found a small study that showed that most people (96% of women) don't have distinct fat planes in the pelvic organs to begin with - so the plane being indistinct shouldn't be a driving factor in staging or in determining cCR at this point. But, my surgeon brushed that study off because it was a CT study (though my cousin, a radiologist, said it shouldn't matter).

Again - there was no mention of a distinct fat plane from any of my docs ! I will try to look it up and see if I can make sense of what you are referring to. I hope someone around with this issue can contribute and share!

At the end of the day, I suppose I have to trust these people know what they're doing as they do it every day. (Right? Sigh.)

It sounds like you are doing the best that you can. Actively seeking second opinon and reading up ! My counselor mentioned that one of my strength is being pro-active in seeking help and opinions and that is what will help me to overcome adversities - be it surgery or not. I hope it can be the same for you too. She also got me to think about what got me through my last adversity, and draw strength from that previous experience and apply to this one now. Maybe you can give it a go and think about it too ?


Good luck to you and keep us posted. I'll be particularly interested in your outcome as our situation sounds similar.

Yes - let's keep each other posted !

Lakeswim
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Feb 14, 2019 9:51 am

prs wrote:Please don't fret about your month of waiting. I believe it was pretty much standard practice for Dr Habr-Gama's patients to wait 12 weeks before she determined if they'd had a CCR.


Hi PRS - My primary colorectal doctor is really pro ww and he is excited at the prospect of me being a potential ww candidate. He briefly mentioned that he has chanced it with patients at 16 weeks wait ! I don't remember the exact data of Habr-Gama but I do remember 12 weeks seems to be the consensus of those who are pro ww.

My oncologist and rad onco on the other hand are quite upset and frustrated that I have chosen to wait out for another 6 weeks, and this is considering that I am NOT even a ww candidate as yet. Both of them started telling me dire stories of patients recurrence despite data has shown salvage surgery is no worse-off than surgery at the beginning. They are still unimpressed by the limited number of trials done and the low percentage of patients who actually qualifies as ww (20%). They come from the view point that with my tumour completely gone physically, this would have been the perfect time to undergo the knife instead of giving it any opportunity to return ! I appreciate their honesty but have decided to go for it anyway.

The disagreement between my healthcare team is frankly quite amusing but the colorectal doc has advised to embrace the difference in their opinions so that I can make a final informed choice for myself.
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Phillypatient
Posts: 43
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Thu Feb 14, 2019 2:09 pm

Hi Jolene

You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.

https://www.mskcc.org/clinical-updates/ ... nt-therapy

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

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 Feb 14, 2019 2:11 pm

My colorectal surgeon introduced W&W to her facility in LA. I could tell that my local oncologist and my radiation oncologist were not too thrilled about it, although they never actually came out and said anything negative. Three years later both these Drs are enthusiastic W&Wers after they've seen first hand that I and others have benefited greatly from the program.
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

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 Feb 14, 2019 2:22 pm

Phillypatient wrote:Hi Jolene

You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.

https://www.mskcc.org/clinical-updates/ ... nt-therapy

Good luck

Hi Phillypatient, very interesting, thanks for posting!
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

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Thu Feb 14, 2019 4:00 pm

Phillypatient wrote:Hi Jolene

You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.

https://www.mskcc.org/clinical-updates/ ... nt-therapy

Good luck


Hi PhillyPatient.
I see you’ve had the surgery. How are you doing?
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Feb 14, 2019 11:33 pm

Phillypatient wrote:Hi Jolene

You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.

https://www.mskcc.org/clinical-updates/ ... nt-therapy

Good luck


Thanks for the link Philly ! Very interesting. However I may be too late for full chemo ? No - non of the docs has advised on TNT. My CRT back in Dec 18 was prescribed on the basis that I will go for surgery in due time.

The oncologist also made it very clear to me that the standard chemo he will be prescribing whether after surgery or being placed on WW is on the basis of reducing chances of mets and NOT for dealing with the tumour itself.

I suppose my colorectal doc is taking on a conservative approach towards WW ? Am I right to say that TNT seems to be a radical move on top of an already controversial WW approach ?
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Phillypatient
Posts: 43
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Fri Feb 15, 2019 3:51 am

I think the PROSPECT trail shows that chemo itself can shrink a tumor, so it’s possible for chemo to be used to treat any potential micromestastases in addition to addressing the primary tumor. See the below link from MSK from 2015

https://www.mskcc.org/clinical-updates/ ... ut-surgery

It’s possible to get a full response with chemo after chemo radiation. So it serves a dual purpose.

Consider that the head of the most prestigious cancer institute in the world who is a surgeon is trying to research a way to avoid surgery in certain patients. That should tell you just how brutal the surgery is. Some people adjust well to the surgery and for some it’s unimaginably life altering. For some people quantity of life is more important than quality of life. If your goal is to give yourself as much time as possible with minimal risk than surgery is most likely the answer.

Lakeswim, this is my conversation with anyone who asks how I’m doing
“How are you doing?”
I say “ I’m still alive”
They say “that’s good thing right?”
I say “ didn’t really qualify it”

That’s the best answer I have

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

Annie50
Posts: 95
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sat Feb 16, 2019 10:15 am

prs wrote:
Phillypatient wrote:Hi Jolene

You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.

https://www.mskcc.org/clinical-updates/ ... nt-therapy

Good luck

Hi Phillypatient, very interesting, thanks for posting!



Hi prs

Just wondered when you were on W&W and you had your MRI then sigmoidoscopy did they do them at the sake time and did they report on the MRI to you ? Xxx Annie xxx

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 » Sat Feb 16, 2019 12:03 pm

Hi Annie50, I'm still on W&W, it's a five year program. For the first two years I had quarterly flex sigs and MRIs. Now it's every six months until the five years are up!

It's a very long drive for me to get to my Drs in LA. Most often they will kindly arrange for me to have the flex sig in the morning followed an hour or so later by the MRI. My surgeon will then email me the MRI results a couple of days later.
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

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 » Mon Feb 18, 2019 10:28 am

I should add my W&W program also includes an annual colonoscopy.

So like many on this board, I am a fully qualified MiraLAX expert. :mrgreen:
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

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Feb 18, 2019 12:08 pm

Hi all - i have a sigmoidoscopy ordered at the end of March but there were no instructions for me to take any laxatives. Is that normal as I'm aware a full colonoscopy requires a laxative to do the work !
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Mon Feb 18, 2019 1:11 pm

Hi Jolene,
Sigmoidoscopy only requires 2 enemas on the he morning.....
Easy peesey,. prob no sedation either,,,
That's the way mine went, so I'm assuming it's pretty standard :D
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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