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

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mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Fri Sep 14, 2018 7:39 pm

Thx prs,
it’s all good. Enjoyed summer and world cup (soccer). Was in Europe during games.
Have recovered from most of the side effects of chemo except neuropathy , but one learns to live with it.
It’s nice to see that this approach has taken off and evolved.
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 the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

skb
Posts: 100
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Fri Sep 21, 2018 1:39 pm

Good to know that prs and mozart13 are doing well with no recurrence. So am I, my latest sigmoidoscopy was two weeks ago and I was happy to learn there was no local recurrence.
3/21/17: Dx T3N0M0-mid rectal 4.5cm
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17 to 12/17: Folfox
8/19 VATS - 1cm lung nodule
7/17/21- Clean CT, CEA 15.6 !
8/24/21- PET , biopsy finds met along obturator lymph nodes
10/1/21- Surgery , 12 rounds of FOLFIRI -ended 4/22
4/15/22, 9/6/22. 1/20/23- Clean scan, normal CEA
10/23- four sub-centimeter lung nodules, all PET negative

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Fri Sep 21, 2018 3:36 pm

That’s great skb.
It looks like this approach, now call TNT is working. Might come in different order like chemo than chemo/rad, but it’s the same package.
Also people that need operation beneffit from it, as it might be diffucult to start chemo right after operation, and there is time limit when beneffits of therapy are diminished if one waits to long.
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 the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

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 Sep 22, 2018 2:33 pm

Great news skb !!!

I have an appointment with my colorectal surgeon at the end of October. I know she keeps up with all the data, so I'll ask her how long she thinks it will be before W&W goes mainstream.
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 » Mon Nov 26, 2018 7:12 pm

Hello, all.
Peter was kind enough to point me to this thread. I may be putting the cart ahead of the horse, as I have not been given the W&W option yet, but I want to research now, just in case (as I may be able to more calmly research now when I have less anxiety about the decision as it's further off).

I did 4 months of FOLFOX over the summer. Had a month's break, with a pelvic MRI during this time that showed the chemo alone shrank the tumor somewhat (and I had to stop the Oxaly after 5 rounds due to severe hand and leg cramping). I just finished, last week, 28 sessions of radiation with capecatabine (as much as I could tolerate, which turned out to be 20 days). They tell me I will get another pelvic MRI in mid-January (I think that will be close to 8 weeks post radiation) to determine next steps and if W&W is an option for me.

My team is pretty excited about the W&W option - as you can probably tell by the path they chose for me (total neoadjuvant therapy). In fact, early on, they asked me to be part of a clinical trial, which involved being chosen randomly to either get chemo first and then chemo/rad OR the flip option (chem/rad first and then chemo). I was too freaked out at that point and the decision needed to be made quickly in order to start treatment (and I felt a lot of pressure), so I declined being part of it. Anyway, they are excited about the option, so if I meet their criteria (which I need to find out the specifics of), I will have that option.

I have read through this thread once and need to do it again while taking notes, but I'm curious what you folks think are the most important questions regarding the W&W option. (Has anyone made such a list anywhere else?) I also need to learn more about terminology (because terminology and acronyms in these threads always frustrates me and halts my research) and the difference between a pathological response and a clinical response - because that seems critical to this discussion.

Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor. Does tumor size/type/location matter in this decision?)
- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
- How much higher is the risk of recurrence than if I had surgery?
- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
- What will be the plan for surveillance after we choose this option?

Any questions you folks would add to this - perhaps questions you wish you had asked? (I'm sure I'm missing a lot of critical info as I'm just starting this process.)

This is a great thread which has been very helpful, but I have to admit it causes me much anxiety.(What a decision!) I feel like I equally need to do more research on LARS too, so I know what I may live with if I do surgery.

Thanks very much. And best wishes to all.
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*

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Mon Nov 26, 2018 9:52 pm

lakeswim wrote:Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor.
poorly diff'd is less good. I had moderately well diff'd, did the full meal deal ..... and still had one recurrence, and now waiting on CT results to see if I have something else .... 11 years later !

Does tumor size/type/location matter in this decision?)
Yes for a number of reasons

- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
pathCR = they have seen at the cellular level what is there ... I had pCR and still had a met later
clinicalCR= they are using clinical signs, exams and imaging to presume what may be there


- How much higher is the risk of recurrence than if I had surgery?
don't have stats or other info from my sitrep
THIS is probably the exact question they are trying to answer with their clinical trials


- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
make SURE 1,000 % that doing a trial, W&W, whatever ... does NOT exclude you from further options

- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
hoping some more can weigh in. I am NOT W&W and please be advised ... others' experiences may NOT reflect how you will do or not do in any given trial or treatment regimen

- What will be the plan for surveillance after we choose this option?
THIS my friend is the GOLD standard question ...
IMO as much, of different types, with more "eyes" on your sitrep = BETTER




If you find the abbreviations etc an issue please check out our Terminology and abbreviations topic
Or just ask any questions here or in your own topic !

YOU are on the right path
knowledge IS power
use your experts
KICK ASS and take names !!!!! :twisted:

Cheers and Harmony
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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 Nov 26, 2018 10:20 pm

Hi @lakeswim the answers to most of your questions are contained in the thread, but it's a long thread and it's a very complex subject. :!:

Just take your time to read it thru slowly, page by page, so you get to fully understand and remember all the little details. You have plenty of time for this because, as you have already noted, it will be sometime into 2019 before you have to make a decision.

The location of your tumor will also impact your decision, ie how close it is to your sphincter muscles. You might want to consider putting this kind of info in your signature to make it easier for us to advise you.
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 » Mon Nov 26, 2018 10:29 pm

I thought I included my tumor location in my signature - "10-11 from anal verge." Is there something else I don't know about? Please advise as to what info I am missing. (Steep learning curve - just trying to keep up!) Thanks very much for any help!
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 » Tue Nov 27, 2018 12:42 am

Sorry lakeswim, I just realized that when one is writing a reply, and one scrolls down to check previous posts, all the signatures disappear. Your sig is fine!

One point I would like to make is that when I first started this thread W&W was very new. I certainly didn't want to be seen as trying to talk people into doing W&W when I wasn't certain if it was truly a good option. I decided just to post all the info I could, but try to be neutral, and let people make their own decisions.

Three years later I'm 100% for W&W, and feel it is a great option for those folks lucky enough to be candidates for the program. Every day I feel like I'm a walking miracle!
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

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 » Thu Dec 27, 2018 7:29 pm

prs wrote:Big Jay, all I can tell you is It's been eighteen months since I finished radiation and almost a year since chemo and my body is just about back to normal. I had my quarterly exam and rectal MRI on Oct 31st and everything looked good. I am so glad I was lucky enough this option was available to me. I have to believe my QOL is much higher than it would have been if my rectum and sphincter were surgically removed.

My radiation oncologist told me they are seeing higher rates of complete clinical response although they have not changed their radiation procedures. I have to assume they are looking harder given they can now offer their patients "watch and wait" rather than automatically going to surgery. Also they may be waiting longer to make the call as I've read it can take eight weeks or more for the tumor to finish shrinking.

Watch and Wait is not an approved treatment for rectal cancer so I can understand why some Doctors are reluctant to go this route. However it's your body and you are entitled to make your own decision. My surgeon told me that in her 15 years experience before she introduced this program she'd had about a dozen patients who made their own decision to avoid surgery and go to watch and wait. To her knowledge only one of them suffered a recurrence.


Hi, I've just had a CCR to radio chemo and then EUS with 8 x biopsies taken all of which were clear ? (Surgeon looking hard !!) he has said therefore CCR and watch and wait offered but hasn't said mop up chemo ? So why not ? And is it usually offered do you know ? Did you have biopsies after CCR ? Hope you doing ok ? 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 » Fri Dec 28, 2018 11:00 pm

Hi Annie50, my surgeon definitely recommended I take mop up chemo as soon as she told me I'd had a CCR. In fact I had my first infusion seven days later. She has since told me there is plenty of data out there showing that patients who have mop up chemo have lower recurrence rates than those who don't. She said this applies both to W&W patients and patients who have surgery.

I did not have a biopsy. My surgeon (board certified with 20 years experience) told me that having the knowledge to determine a CCR is the most important thing. Biopsy samples are so small that the odds of hitting a remaining spec of cancer are very small, and it would be very unwise to draw any conclusion from these small biopsy samples. That's why mop up chemo is so important, you are making sure you kill any remaining specs of cancer before they have a chance to spread or regrow.

My tumor was very low and into my sphincter muscles. My surgeon also explained that taking any decent sized sample from that area would have involved cutting into the muscles with a very likely detrimental impact on my future QOL.

Hope this helps, and I would encourage you to inquire about mop up chemo. Yes, it's pretty miserable, but IMHO it's worth it to make sure any remaining cancer cells are wiped out. Good luck with the W&W, the medical profession moves very slowly but I believe W&W starting to be accepted more widely. It sure worked out great 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

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 » Sun Jan 27, 2019 2:54 pm

prs wrote:Hi Annie50, my surgeon definitely recommended I take mop up chemo as soon as she told me I'd had a CCR. In fact I had my first infusion seven days later. She has since told me there is plenty of data out there showing that patients who have mop up chemo have lower recurrence rates than those who don't. She said this applies both to W&W patients and patients who have surgery.

I did not have a biopsy. My surgeon (board certified with 20 years experience) told me that having the knowledge to determine a CCR is the most important thing. Biopsy samples are so small that the odds of hitting a remaining spec of cancer are very small, and it would be very unwise to draw any conclusion from these small biopsy samples. That's why mop up chemo is so important, you are making sure you kill any remaining specs of cancer before they have a chance to spread or regrow.

My tumor was very low and into my sphincter muscles. My surgeon also explained that taking any decent sized sample from that area would have involved cutting into the muscles with a very likely detrimental impact on my future QOL.

Hope this helps, and I would encourage you to inquire about mop up chemo. Yes, it's pretty miserable, but IMHO it's worth it to make sure any remaining cancer cells are wiped out. Good luck with the W&W, the medical profession moves very slowly but I believe W&W starting to be accepted more widely. It sure worked out great for me.


Thanks so much prs.. I am going to ask for onco appointment .. I just don't understand why my surgeon seemed so against doing the chemo (I do have private insu) he just said no need fo as let's leave that in our arsenal if you need it later as at the moment with no evidence why do it ? he is a top surgeon and The Christie are a top hospital in W&W so it's odd ? Racking my brains as to why he would not suggest it ? Really worried about it xxx Annie xx

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 » Sun Jan 27, 2019 3:00 pm

mozart13 wrote:Trial, chemo before chemo/rad, chemo after chemo/rad, we shall see result's before the end of this year. Will be interesting. We have result's chemo/rad than 6 rounds of Folfox. In this trial they are giving 8 rounds of Folfox or 6 rounds of CapeOX.
Wonder if anybody on this board is part of that trial?

https://clinicaltrials.gov/ct2/show/NCT ... val&rank=1

I'm so confused Mozart
I had CCR at top hospital The Christie with top surgeon and onco looking after me and MDT team he took 8 biopsies under anaesthetic to check and then no cancer cells so said W &W but no extra chemo as he says why when no evidence .. he did say I could speak to onco but seems so confusing ? Helllp ... xxx Annie xxx

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 » Sun Jan 27, 2019 3:09 pm

Anne,
chemo is rough but won't kill u
Matastais will.....
I think that's a no brainer for me ( 3 months of shit v reacurance)

Hope this is helpful and not more confusing
ADELE X
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

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 » Sun Jan 27, 2019 3:13 pm

Eleda wrote:Anne,
chemo is rough but won't kill u
Matastais will.....
I think that's a no brainer for me ( 3 months of shit v reacurance)

Hope this is helpful and not more confusing
ADELE X

It is really helpful Adele you don't think it's too late to start now do you ? A month after CCR ? But I still don't understand why he wouldn't advise it ? ! Particularly when it's private insurance paid .. not that that should matter either way .. it's just odd isn't it how are hkh ? Xxx Annie xx


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