Page 18 of 40

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

Posted: Mon Feb 18, 2019 4:06 pm
by susie0915
I was instructed to do two fleet enemas a couple hours before the sigmoidoscopy.

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

Posted: Mon Feb 18, 2019 5:30 pm
by prs
Yes, liquid diet for 24 hours before the procedure, followed by two Fleet saline enemas, two hours before the procedure. The two enemas to be about 1/2 hour apart. I usually do an extra enema the evening before.

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

Posted: Mon Feb 18, 2019 8:46 pm
by Jolene
Re: Enema for sigmoidoscopy

Thanks all for the replies ! The doc didn't brief me on the procedure of sigmoidoscopy so I'm kinda curious and it's a little complicated to try and reach him now.

Oh gosh.. enema is horrid at least the ones I had a while back which was unpleasant ! It was for an ultrasound scan of the rectum - one shot up and it took about 5 mins for it to take effect. Never have I felt so wretched ! Lol !

More questions...

Does the sigmoidoscopy requires a full operating theater preparation and admission(in-patient) like the colonoscopy does ? Or is it simply done at the doctor's clinic (out-patient) ? Were you under sedation ? I just googled and it says typically not, but with a scope up in the bum for 10-20 mins that sounds pretty agonizing even though its supposed to be painless. The regular 30 second anal check is already very uncomfortable for me ! Lol !

I was not advised to have a clear liquid diet at all, why is that so.. hmmm !

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

Posted: Mon Feb 18, 2019 8:52 pm
by Pyro
The few I had was done in the doctors office, outpatient and probably took 10 minutes. No sedation, mine was done in front of a crowd.

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

Posted: Mon Feb 18, 2019 9:01 pm
by weisssoccermom
I've had my fill of flex sigs. My guess is that they are doing a modified one.....basically it just checks in the rectum.
Here's my answers to your questions:

1. Prep: Day of procedure....2 enemas in the morning....that was it. You can see from my signature that I only had an excision...so I was on surveillance every 3 months. The ultrasound the first three months, flex sig next three months and so on. That went on for a good 2 years....then it was spaced out. NEVER was I told to be on a liquid diet....just the 2 enemas in the morning for either procedure.

2. Flex sig was done in the same room as the colonoscopy.....they both use the same equipment.

3. No sedation. Wasn't exactly pleasant but certainly manageable. I only had one that was that long (time wise)....most were significantly shorter in time. My docs were interested in the rectal area, specifically in the area where I had the excision. I've had one polyp removed while wide awake and was surprised that it didn't hurt. The worst of it is the pressure.

When I had my excision, it was not at all common (Dr. Habr Gama had communicated with me and my doctor about the protocol back then) and I went along with the surveillance which was very thorough. It's a trade off for not having the more radical surgery. You can get through it....just take it one test at a time.

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

Posted: Mon Feb 18, 2019 11:35 pm
by prs
Jolene wrote:Does the sigmoidoscopy requires a full operating theater preparation and admission(in-patient) like the colonoscopy does ? Or is it simply done at the doctor's clinic (out-patient) ? Were you under sedation ? I just googled and it says typically not, but with a scope up in the bum for 10-20 mins that sounds pretty agonizing even though its supposed to be painless. The regular 30 second anal check is already very uncomfortable for me ! Lol !

I was not advised to have a clear liquid diet at all, why is that so.. hmmm !

My first flex sig and anal exam was at a Tumor Board meeting right after I was diagnosed. My tumor was right at the end of the anal canal, and it's not often Drs get to actually touch a tumor, so I discovered there were four Drs donning their rubber gloves and queuing up to have a feel. I later found out this was a teaching hospital, and two of the Drs were interns, maybe that's why they were up there so damned long!! :wink:

My wife said I was as white as a sheet when I emerged from the examination room. It's a good job she was there because I was so drained from the experience I missed most of the following treatment option discussion.

After that ordeal ordinary flex sigs seem like a piece of cake!!! :lol:

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

Posted: Wed Feb 20, 2019 11:09 am
by Jolene
Thanks to all who responded about the sig flex procedure. Feeling a little more at ease now knowing what's coming up although it would have been nice to be sedated albeit only 10 mins !

@PRS - Lol @ 4 doctors trying to get a feel up there ! I would have been freaked out if there were doctors queuing one after another to get their fingers up in there !! Kudos to you for getting through it ! I'm already feeling very uncomfortable with just 1 doctor doing it at just about every appointment but if and when I get onto the watch and wait programme - it would be all worthwhile and happy to have them do whatever they want with me ! Hah !

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

Posted: Thu Feb 21, 2019 2:58 pm
by prs
Here's hoping it all works out for you Jolene.

I was very uncomfortable talking about my rectal cancer when first diagnosed, and we only told those people who would have been curious about my absences for treatment. :oops: Three years later the number of people who have seen my bare backside is in the triple digits, and all modesty is out the window!!! :D Now I have no problem telling anyone who'll listen why regular colonoscopies are a very good thing. :)

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

Posted: Fri Feb 22, 2019 2:54 pm
by lakeswim
I wrote a lengthy post about my appt @MSK this week but the draft I had saved disappeared. Here's an abbreviated replacement. (I have my first cold post-treatment and it's quite a doozy so I don't have much energy.)

Interesting things to note about MSK:
- My MRI @ MSK was a RECTAL MRI vs. the 3 PELVIC MRIs I have had locally. Apparently, there is a difference. Rectal MRIs provide better scans. They also use a special drug to slow down motility to get better pictures. Rectal MRIs are not available everywhere....
- MRI@ MSK is read by a radiologist who specializes in reading colorectal MRIs.
- Tumor board who will hear my case next week is made up of doctors who deal STRICTLY with colorectal cancers. It is not a general cancer tumor board like the one locally.
(*Please note: I truly value my team locally, but these are important distinctions when you have big decisions to make.)

I saw Dr. G-A, the Head of Colorectal Surgery, the next day. In his opinion, the flex sig is the MOST IMPORTANT data point for him (moreso than the MRI), in terms of determining a complete response. So, after a digital exam, he did a flex sig. I was awake and watched. (This was my 3rd flex sig, but my first without anesthesia and it was really no big deal. I actually prefer the flex sig to the digital exam. And why go through anesthesia if you don't have to?) He had to really look around to find the tattoos. He remarked how everything looked good.

Dr. G-A had spoken to the radiologist on the phone the previous day after my MRI and the radiologist said the entire primary tumor is gone and she was "unimpressed with infiltration of the uterus."

(Note: I did chemo first and then chemo/rad. I am now 3 months out from chemo/radiation. I had a Pelvic MRI after chemo, which found the tumor had shrank "significantly" and then another Pelvic MRI last month - 6 weeks post radiation - that showed the tumor was completely gone. My local team wouldn't offer me W&W due to their opinion that the latest Pelvic MRI was "mushy" and the "indistinct fat plane" may indicate invasion of the uterus. They did NOT consider mine a complete response so didn't see me as a candidate for W&W and recommended surgery.)

Dr. G-A considers my response a complete response and he'd consider me, if I were on his trial, as a candidate for W&W. He did say it is best to do W&W on a clinical trial to assure compliance to the protocol, which is rigorous. But, he said that if I were compliant with the protocol, he considers my response complete and, in his opinion, I may consider W&W. (The MSK protocol is Flex sig - quarterly. Rectal MRI - every 6 months. I need to check my notes on the CTs.) The tumor board will meet next week to discuss my case but the post-doc fellow told me after Dr. G-A left that the board usually shares his opinion. (Also, he said my case is "not complicated.")

Dr. G-A said that their experience shows that salvage surgery is "typically" no more complicated than having surgery now (there are the few that are more complicated, but that's a minority).

There were also a few minor differences in how he would approach my surgery vs my surgeon here if I were to choose surgery. And he also added some info that I hadn't yet heard - specifically that my bladder function will be affected should they need to take my uterus. (So, surgery may affect both bladder on top of bowel function.) Lastly, he refused to make any prediction about the extent I will have LARS (my local team made predictions that it "wouldn't be that bad") as he said it's not easy to predict.

The post-doc fellow brought up all the female side effects of treatment/surgery and told me they have a team @MSK that helps patients deal with these side effects. The team had, in fact, just presented at the tumor board last week. This was nice to hear, given I had to learn about those side effects on this forum while my Rad Onc team here said little/nothing about it.

Given I am sick, I am not making any big decisions this weekend. Plus, I will wait to hear from their board on Monday. Meanwhile, I am making my way (for probably the 3rd or 4th time) through this W&W thread from the beginning to end. Thanks everyone for your different perspectives! It's a difficult decision for sure. But I feel better (and fortunate) to have been seen by doctors at one of the premier cancer centers in the country.

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

Posted: Fri Feb 22, 2019 4:23 pm
by prs
Great news lakeswim!!! You now have options available, and that's exactly what you wanted from the second opinion.

Do take some time to absorb all the new info, I know it can take a few days to go over what the Drs were saying, and figure out exactly what they meant in layman's terms!

The Drs on my tumor board were all colorectal specialists, and that made me more confident their advice was well founded. My Kaiser facility also developed an MRI protocol specific to the rectum, and they too have a radiologist who specializes in reading them.

I'm glad you asked about salvage surgery, it was that piece of info that really helped me make the decision.

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

Posted: Fri Feb 22, 2019 6:08 pm
by mozart13
lakeswim wrote:He had to really look around to find the tattoos. He remarked how everything looked good.


That is great news lakeswim lady. When they did sigmoidoscopy on me after chemo/rad, was hard to find the spot, if it wasn't for tattoo they wouldn't be able to find it.
Looked like brand new.
W&W approach is pretty rigorous, they just switched me to every 6 month's exam's, finally some break.
My surgeon said that he would go the same route.

Good luck to you!

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

Posted: Sat Feb 23, 2019 5:32 am
by Annie50
lakeswim wrote:I wrote a lengthy post about my appt @MSK this week but the draft I had saved disappeared. Here's an abbreviated replacement. (I have my first cold post-treatment and it's quite a doozy so I don't have much energy.)

Interesting things to note about MSK:
- My MRI @ MSK was a RECTAL MRI vs. the 3 PELVIC MRIs I have had locally. Apparently, there is a difference. Rectal MRIs provide better scans. They also use a special drug to slow down motility to get better pictures. Rectal MRIs are not available everywhere....
- MRI@ MSK is read by a radiologist who specializes in reading colorectal MRIs.
- Tumor board who will hear my case next week is made up of doctors who deal STRICTLY with colorectal cancers. It is not a general cancer tumor board like the one locally.
(*Please note: I truly value my team locally, but these are important distinctions when you have big decisions to make.)

I saw Dr. G-A, the Head of Colorectal Surgery, the next day. In his opinion, the flex sig is the MOST IMPORTANT data point for him (moreso than the MRI), in terms of determining a complete response. So, after a digital exam, he did a flex sig. I was awake and watched. (This was my 3rd flex sig, but my first without anesthesia and it was really no big deal. I actually prefer the flex sig to the digital exam. And why go through anesthesia if you don't have to?) He had to really look around to find the tattoos. He remarked how everything looked good.

Dr. G-A had spoken to the radiologist on the phone the previous day after my MRI and the radiologist said the entire primary tumor is gone and she was "unimpressed with infiltration of the uterus."

(Note: I did chemo first and then chemo/rad. I am now 3 months out from chemo/radiation. I had a Pelvic MRI after chemo, which found the tumor had shrank "significantly" and then another Pelvic MRI last month - 6 weeks post radiation - that showed the tumor was completely gone. My local team wouldn't offer me W&W due to their opinion that the latest Pelvic MRI was "mushy" and the "indistinct fat plane" may indicate invasion of the uterus. They did NOT consider mine a complete response so didn't see me as a candidate for W&W and recommended surgery.)

Dr. G-A considers my response a complete response and he'd consider me, if I were on his trial, as a candidate for W&W. He did say it is best to do W&W on a clinical trial to assure compliance to the protocol, which is rigorous. But, he said that if I were compliant with the protocol, he considers my response complete and, in his opinion, I may consider W&W. (The MSK protocol is Flex sig - quarterly. Rectal MRI - every 6 months. I need to check my notes on the CTs.) The tumor board will meet next week to discuss my case but the post-doc fellow told me after Dr. G-A left that the board usually shares his opinion. (Also, he said my case is "not complicated.")

Dr. G-A said that their experience shows that salvage surgery is "typically" no more complicated than having surgery now (there are the few that are more complicated, but that's a minority).

There were also a few minor differences in how he would approach my surgery vs my surgeon here if I were to choose surgery. And he also added some info that I hadn't yet heard - specifically that my bladder function will be affected should they need to take my uterus. (So, surgery may affect both bladder on top of bowel function.) Lastly, he refused to make any prediction about the extent I will have LARS (my local team made predictions that it "wouldn't be that bad") as he said it's not easy to predict.

The post-doc fellow brought up all the female side effects of treatment/surgery and told me they have a team @MSK that helps patients deal with these side effects. The team had, in fact, just presented at the tumor board last week. This was nice to hear, given I had to learn about those side effects on this forum while my Rad Onc team here said little/nothing about it.

Given I am sick, I am not making any big decisions this weekend. Plus, I will wait to hear from their board on Monday. Meanwhile, I am making my way (for probably the 3rd or 4th time) through this W&W thread from the beginning to end. Thanks everyone for your different perspectives! It's a difficult decision for sure. But I feel better (and fortunate) to have been seen by doctors at one of the premier cancer centers in the country.


Hi Lakeswim

Just seen this !!! Fabulous as prs and Mozart say you have options .. it sounds like a complete response to me .. do they take biopsies there ? And that rectal MRI sounds different than normal pelvic one .. what are you leaning towards ? I am on W & W now at one of the leading Cancer specialists in W&W so will be v interested to see what you do .. does anyone know the deinitive stats on how many comp clinical responses are maintained / sustained ?
Best Annie xxx

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

Posted: Mon Feb 25, 2019 11:54 am
by lakeswim
W&W folks:
- Any idea how insurance deals with W&W? It's not "accepted" so curious if you had any resistance to it in terms of insurance paying for frequent procedures, scans, etc.
- I'd prefer a Rectal MRI every 3 months (vs 6 months), but if 6 months is their protocol, think it's possible to ask for sooner? I'd be more comfortable with 3.
- How soon after your diagnostic colonoscopy did you get another one? That didn't seem to be on the surveillance radar. I need to ask about that too as mine has been nearly a year.
- What else am I missing in terms of tests? (DRE & Flex Sig every 3 months, MRI every 6 months (though I prefer 3), CT scans of chest and pelvis every 6 months, colonoscopy ?????????, ...)

Thanks.

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

Posted: Mon Feb 25, 2019 1:47 pm
by prs
I have a Kaiser Medicare Advantage plan so don't have to worry about insurance. If a Kaiser Dr schedules me for a procedure, then Kaiser automatically covers it.

My treatment is as you described, except I do not have CT scans of chest and pelvis. I did have a chest CT shortly after I had the CCR but when that came in fine, there was nothing after that. I do have an annual colonoscopy, also follow up exams with my oncologist that include blood work (blood counts and CEA) These are on the same time periods as my follow up appointments with my surgeon.

You might want to check what the follow up procedures would be if you had surgery. It may be those procedures are not too different from W&W, and the insurance expense might be similar. Of course, if you go on W&W, your insurance company will not have to pay for the expensive surgeries.

PS my surgeon also thinks the sigmoidoscopy is more important than the MRI for determining a CCR. Her probe has a camera and she takes photos of the treatment area, and shows them to me. I have no idea what I'm looking at, but apparently the whiter the tissue, the better.

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

Posted: Mon Feb 25, 2019 4:40 pm
by skb
Lakeswim,
Congratulations.

I had UHC insurance . There was no denial of payment after I hit my deductible

skb