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

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lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Mar 26, 2019 1:39 pm

prs wrote:Hi Jolene, I do hope your PET/CT tomorrow turns out well.

One interesting thing I would like to point out is that my Dr relied almost exclusively on visual observation of the tumor site to determine CCR. I did have confirming MRIs and she did feel the site with her fingers, but she used some kind of probe that had a light and a camera so she could look closely at the tumor site on a screen. She also took photos, or maybe they were screen shots that she showed me afterwards and kept copies in my file. As I understand it the smoothness and color of the tissue remaining on the tumor site are important pieces of evidence in determining CCR.

If I remember correctly the Dr lakeswim consulted for her second opinion also believed visual evidence was the most important criteria. Has your Dr said anything to you about how your tumor site looks visually?



Yes, PRS. My second opinion surgeon said he uses flex sig as the most critical data point for determining cCR.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Phillypatient
Posts: 29
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Tue Mar 26, 2019 2:30 pm

Jolene

Have you considered consolidation chemotherapy which is done CRT first then chemotherapy and finally surgery if there is no CCR? Below are two links worth reading

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

https://www.spandidos-publications.com/ ... t=fulltext

Having undergone the surgery 1.5 years ago, I would do everything possible in my power to never have the surgery.

In either case, I presume you still have to do the chemotherapy piece to address any potential micrometastases. I agree with the logic that it is easier to do chemo pre surgery.

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

nifty624
Posts: 19
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Tue Mar 26, 2019 2:46 pm

Hi Jolene,

It sounds like we are at similar stages in treatment - although I think you are a little ahead of me. I am at about 9 weeks post nCRT.

My surgeon had planned to do the LAR procedure on me as a matter of standard treatment protocol for a T3N1M0 (although my T3 was borderline - at first they called it T2 and I was going to have a LE and possibly some chemo after). When an MRI determined that the tumor was a T3 and there were two sketchy looking nodes, (N1), the protocol went to nCRT first, followed by LAR and then follow up chemo.

But, I had a radiation injury -- and now have permanent ileitis, which after a horrific month, is now well-controlled with medication and I am doing really well. I have started to regain some of the weight I lost and I am able to eat more or less normally.

The plan for the LAR was in place, and I was doing a lot of reading about LAR syndrome. WIth my now pre-existing ileitis, I am almost certain to develop LARS and possibly a severe case of it. I decided to do even more research -- including finding this thread which was the most helpful thing I found at all! I had never heard of the W&W protocol and I am so thankful prs posted this thread and this discussion was here. Thank you! I then found medical journal articles, clinical trial studies and other highly reliable data to help me figure out what I want to do and how to advocate for myself.

What Mozart said above is true - some patients with T0-3, N0 are over treated. My oncologist and surgeon both mentioned this recently in the course of our discussions about my treatment plan.

Anyway, I was concerned that he might "fire" me as a patient for questioning the original plan (what is considered the current best practice/"gold" standard of care) , but I decided to ask him to consider performing a Local Excision surgery on me instead of going straight to LAR>

I had hoped to do something similar to what weissoccermom had done - have the LE surgery (with full thickness excision for biopsy, if possible) and preserve my organ function - because I am unlikely to have a successful function after a stoma reconnection due to the severe and permanent ileitis - and I wanted to still follow up with the adjuvant chemotherapy.

My surgeon was - luckily - willing to consider it. He is also an expert in TAMIS LE procedure, which is helpful to my situation. He said that my preliminary response to the nCRT looked really good (I had had a CTscan in early January, midway in the nCRT treatment due to the severe enteritis symptoms which put me in hospital - and even then, only 3.5 weeks into the 6 week cycle, the tumor was described as "significantly reduced". SO, the doc said he was willing to do LE if my MRI and a follow-up flex sig scope/biopsy looked good too.

My MRI came back showing "the mass seen on previous MRI had nearly completely disappeared" and, in fact, what thickening that remained could be radiation scar tissue. Also no evidence of lymphadenopathy (ie no more sketchy looking lymph nodes). That was excellent news and a sign that my response had been near complete or complete.

The follow up flex sig test and biopsy likewise looked good and noted scarring and some inflammation (radiation related) WITHOUT evidence of malignancy. The surgeon said that visually things looked pretty good and except for the expect areas of scarring, he thought the rest of the area looked like quite healthy tissue. He didn't mention anything about color of the scarring or whatnot, though, so I am unsure if that was a criteria for my team. My team is not involved in any W&W studies, so we are kind of flying by the seat of our pants at my insistence.

But more good news. There are several ongoing studies going on now, as others have mentioned - and in fact, my doctors both agreed that it was possible that when the studies and trials are complete, a LE W&W approach might very well become the new "gold standard" for cases like mine which were borderline between T2 and T# to begn with and then had a complete or near complete response to nCRT. So they were willing to support my wishes. Also my surgeon consulted with a colleague in PA (I wondered if it was the doctor weissocermom called :-)) who agreed with my surgeon's thought that perhaps a LE would not only be OK but possibly the best course of action for me. So that was great to hear.

One thing I should say here is this: I was determined to go with a LE plus W&W or even just W&W (if my surgeon refused to perform the LE and I could nto find another). I was not willing to undergo the LAR under any circumstances, at least at this point. SO, I'd like to make it perfectly clear that my doctors' first advice was for me to undergo a LAR-- and they still seemed to prefer it at least until the 6 week post nCRT MRI came back and the flex sig scope was performed. I advocated strongly for what I wanted and was lucky that the surgeon and oncologist were willing to support me. As my results came back so good, I think they are quite comfortable with the decision now, and that is when I heard the opinion that perhaps some cases are "over-treated".

So, instead of the radical surgery, I am going to have a local excision on April 5 - which is exactly 10.5 weeks after completion of the nCRT. A few weeks later toward the end of April, I will start the post op chemotherapy. Right now, it is expected to be a combination of Capecitabine (Xeloda) and Oxaliplatin (Eloxatin) with a chest port used for the infusions of the Oxaliplatin. I'm a bit uneasy about the Oxaliplatin part of it, as I am concerned about neuropathy. I tolerated the Xeloda quite well in the nCRT phase (combined with radiation).

I am comfortable with the decision I made and I understand the risks. For me, personally, it is the right decision at this point in my life.

ETA --- It took me so long to write this out with a few interruptions that I see prs, the OP, has also posted. I will post this quickly and come back to read and add later.
F57yo DX T2 carcinoma 11/6/18
CT scan 11/09/18 MRI 11/15/18 T3N1M0
nCRT Xeloda/Radiation X28 12/10/18 - 01/22/19
Hospitalized 01/02/19 w/acute ileitis (radiation enteritis)
01/02/19 CT scan: tumor "significantly reduced"
6 week MRI 03/06/19 nearly complete CR
Flex SIg scope/biopsy 03/08/19; no evidence of malignancy
Local Excision TAMIS 04/05/19
Pathology: 4mm fragment removed with clear margins; no evidence of remaining disease
Chest port installed 05/29/19
(FOLFOX) begins 05/01/19.

prs
Posts: 154
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 Mar 26, 2019 4:07 pm

lakeswim wrote:Yes, PRS. My second opinion surgeon said he uses flex sig as the most critical data point for determining cCR.

Hi lakeswim, thanks for confirming this. I was following your treatment journey with great interest. Have you been able to come to any final decisions?
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: 209
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Mar 26, 2019 4:44 pm

Nifty624 - What I’ve learned from all of this last year (chemo and then chemo/rad) is that everyone has a different experience. You have a different body and tolerance than I do. You have different doctors than I do. You have a radiation injury (and I’m so sorry about that) and while I’ve learned not to speak too soon - because you never know and radiation keeps working - I have not yet experienced that.

That said, I only tolerated so many rounds of oxalyplatin. My hands and legs cramped up so bad, I couldn’t hold anything in my hands and couldn’t walk. They had to decrease the dose and then cut out the Oxaly entirely. My chemo weeks were spent in bed. But some people on this board work through these infusions and even go running and do fine. I have neuropathy in my feet/toes as an Oxaly parting gift. Hopefully not permanent but it’s not terrible and I can live with it.

My point is - make sure to advocate for yourself on the chemo. My Onc nurse kind of blew me off (“yes, I’m sorry, those are side effects,...”) whereas my oncologist immediately took action to decrease next dose. So, while I’m chemo, report and then report again. Make sure you are heard - even if it seems like you are a broken record.

PRS- thanks for asking. I’m a little nervous, I must admit, about the fact I’m doing surveillance and taking no chances, so have refrained from making any grand announcements. Plus, my local team is not happy I’ve taken this route. They believe that the W&W option is starting to slip and be used a bit too liberally. My tumor is/was (what tense do you use?) not low so they claim that W&W should be reserved for those with low tumors. But the second opinion said himself that they can’t predict what level of bowel dysfunction anyone will have (unless tumor is super low) - so how can they base their decision on where my tumor is/was?

The fact remains that surgery is the recommended next step for anyone with rectal cancer - cCR or not - even when W&W is given as an option. I even noticed, when I finally got my hands on my visit notes from MSK, that their notes are much more conservative in tone than the actual discussion that was had, which is slightly upsetting to me.

Today is a year to the day since I had my first colonoscopy and they found the tumor. I have my next colonoscopy (guess they are annual now) next Friday - yikes! I get my next flex Sig in May. So at least I have folks watching.

Oddly enough, it seems that the W&W “non-operative management schedule” (don’t call it a protocol because it’s “not an accepted” strategy!) is not standardized. Based on my reading here, it seems the medical facilities that are newer to W&W have a more frequent schedule. Both my local and MSK team say 4 months flex Sig and 8 months MRI. I would prefer more frequent - esp the first year.

Also, I have yet to decide on where I will do surveillance. I had a scare last Friday - lots of sudden pain - but I determined it was my irradiated rectum’s response to having sriracha sauce the night before for the first time since treatment. That scare made me think twice about how all of this will work if I travel for surveillance and have any issues.

I can see why some people can’t handle the anxiety of W&W. It hasn’t been that long but I have my days (and nights!!) where I believe I’m stark-raving mad for not getting it out via surgery. (My local surgeon didn’t help when I last saw her when she said, “You’re a young woman and I’d hate to see it metastasize. After all, we can’t cure all metasteases.” YIKES!!!

Only time will tell!

Jocelyn - I can’t speak for your situation, but I’m still surprised they’re not requiring chemo before considering W&W. In fact, I thought that was an expectation. But if you are in Europe, it may be different.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Mar 26, 2019 7:36 pm

prs wrote:Hi Jolene, I do hope your PET/CT tomorrow turns out well.

One interesting thing I would like to point out is that my Dr relied almost exclusively on visual observation of the tumor site to determine CCR. I did have confirming MRIs and she did feel the site with her fingers, but she used some kind of probe that had a light and a camera so she could look closely at the tumor site on a screen. She also took photos, or maybe they were screen shots that she showed me afterwards and kept copies in my file. As I understand it the smoothness and color of the tissue remaining on the tumor site are important pieces of evidence in determining CCR.

If I remember correctly the Dr lakeswim consulted for her second opinion also believed visual evidence was the most important criteria. Has your Dr said anything to you about how your tumor site looks visually?


Hi PRS - Thanks !

From the tests that my doc has ordered, it looks like the flex scope is the only thing that will provide him a visual in due time. Perhaps that's what your doctor did first ? My doc is much more keen on relying on MRI and PET/CT scan to determine any cancer activity first and foremost. I will remember to check with him on visuals when I see him tomorrow.

I'm guessing different doctors have different preference for data to determine WW ?
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

nifty624
Posts: 19
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Tue Mar 26, 2019 7:45 pm

Jolene,
Another thing they can do with the flex sig scope is take samples for biopsy. My surgeon did that and the absence of any remaining cancer cells in those samples helped make him even more comfortable with my decision to do a LE and adjuvant chemo. Although tbh he was already saying it seemed like a perfectly sound decision after the near complete MRI and his discussions with collegaues out east who have been involved in or following clinical trials and so on.
F57yo DX T2 carcinoma 11/6/18
CT scan 11/09/18 MRI 11/15/18 T3N1M0
nCRT Xeloda/Radiation X28 12/10/18 - 01/22/19
Hospitalized 01/02/19 w/acute ileitis (radiation enteritis)
01/02/19 CT scan: tumor "significantly reduced"
6 week MRI 03/06/19 nearly complete CR
Flex SIg scope/biopsy 03/08/19; no evidence of malignancy
Local Excision TAMIS 04/05/19
Pathology: 4mm fragment removed with clear margins; no evidence of remaining disease
Chest port installed 05/29/19
(FOLFOX) begins 05/01/19.

prs
Posts: 154
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 Mar 26, 2019 9:21 pm

Hi Jolene, if your Dr could feel your tumor site it must have been very low, just like mine. My Dr told me she didn't take a sample for biopsy because it would have involved cutting into the sphincter muscles and that could have had a long term effect on the muscle function. She also said that when the original tumor site was quite large, the odds were very low of catching any residual spec of cancer with a tiny biopsy sample, and in my case, it just wasn't worth the risk.

nifty624, thank you for your very informative post, and well done in establishing your preferred treatment and making it happen. It's so great that your Drs rallied round and are supporting your decision, I'm hoping that will happen more often as Drs become more informed about W&W.

lakeswim, I'm so sorry your Drs are not being supportive, I had a feeling they were using the fat plane thing as an excuse! The first three months or so after radiation treatment are the worst, and there's not much you can do but grin and bear it. However it will get better over time.

I know some people do the surgery because they think for sure the cancer will be gone. However there is a recurrence rate for patients who have surgery, and the side effects of that surgery can be devastating for some patients. If cost is not an issue I'd be inclined to take surveillance at the facility that offered the most support.
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

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

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

Postby ticktock10 » Tue Mar 26, 2019 9:54 pm

Hi all,

I have not posted in a while as I haven't been on the forum and haven't had much to report, although "no news is good news" when you are following the W&W protocol.

But today I heard the words "you are as good as cured" from my oncologist :D :D :D

I have recently had my most recent round of PET, MRI and colonoscopy all come back clear - and this is 5 years on from starting down the 'Watch and Wait' pathway.

It hasn't really sunk in yet - but I have been living without the disease for 5+ years and I am fortunate to be able to continue to do so.

If you check my posts, you will see that I have never tried to 'promote' W&W over surgery - partly because I didn't want to jinx myself and partly because I don't believe that it a right or wrong decision. I think it is a very personal decision based on each individual circumstance - but it is important to be as educated and informed as possible.

I will always be grateful to Dr Peter Gibbs (oncologist at the Royal Melbourne Hospital) as he is the person who first told me about Dr Habr-Gama's research and, even though he said it was considered 'controversial' at that time in Nov 2013, he was open about it and he allowed me to make up my own mind based on the available evidence.

For those who are interested, I reckon this video clip seems to be a pretty good summary of the current situation: https://www.mdedge.com/internalmedicine ... al-cancers
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

nifty624
Posts: 19
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Tue Mar 26, 2019 10:00 pm

That's great news ticktock! I am very happy for you!
F57yo DX T2 carcinoma 11/6/18
CT scan 11/09/18 MRI 11/15/18 T3N1M0
nCRT Xeloda/Radiation X28 12/10/18 - 01/22/19
Hospitalized 01/02/19 w/acute ileitis (radiation enteritis)
01/02/19 CT scan: tumor "significantly reduced"
6 week MRI 03/06/19 nearly complete CR
Flex SIg scope/biopsy 03/08/19; no evidence of malignancy
Local Excision TAMIS 04/05/19
Pathology: 4mm fragment removed with clear margins; no evidence of remaining disease
Chest port installed 05/29/19
(FOLFOX) begins 05/01/19.

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Mar 27, 2019 3:23 am

Phillypatient wrote:Jolene

Have you considered consolidation chemotherapy which is done CRT first then chemotherapy and finally surgery if there is no CCR? Below are two links worth reading

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

https://www.spandidos-publications.com/ ... t=fulltext

Having undergone the surgery 1.5 years ago, I would do everything possible in my power to never have the surgery.

In either case, I presume you still have to do the chemotherapy piece to address any potential micrometastases. I agree with the logic that it is easier to do chemo pre surgery.

Good luck!!


Thanks for the links Philly !! I think it's a little "late" for me to consider consolidation chemo seeing as I'm already 12 weeks post radiation and the medical team is now awaiting signals from my colorectal doc whether to proceed with surgery or not which will then determine when chemo will start (it has been decided that it will start only after the surgery or it will start as soon as I'm officially declared a WW case) . My oncologist has clarified right at the beginning that the chemo he will be administering is to address micrometastases and NOT for the prevention of surgery at all. I had a mild chemo together with my radiation at the beginning but that's all.

Has LARS been affecting you badly ??
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Mar 27, 2019 3:46 am

nifty624 wrote:Hi Jolene,

It sounds like we are at similar stages in treatment - although I think you are a little ahead of me. I am at about 9 weeks post nCRT.
........

One thing I should say here is this: I was determined to go with a LE plus W&W or even just W&W (if my surgeon refused to perform the LE and I could nto find another). I was not willing to undergo the LAR under any circumstances, at least at this point. SO, I'd like to make it perfectly clear that my doctors' first advice was for me to undergo a LAR-- and they still seemed to prefer it at least until the 6 week post nCRT MRI came back and the flex sig scope was performed. I advocated strongly for what I wanted and was lucky that the surgeon and oncologist were willing to support me. As my results came back so good, I think they are quite comfortable with the decision now, and that is when I heard the opinion that perhaps some cases are "over-treated".

So, instead of the radical surgery, I am going to have a local excision on April 5 - which is exactly 10.5 weeks after completion of the nCRT. A few weeks later toward the end of April, I will start the post op chemotherapy. Right now, it is expected to be a combination of Capecitabine (Xeloda) and Oxaliplatin (Eloxatin) with a chest port used for the infusions of the Oxaliplatin. I'm a bit uneasy about the Oxaliplatin part of it, as I am concerned about neuropathy. I tolerated the Xeloda quite well in the nCRT phase (combined with radiation).

I am comfortable with the decision I made and I understand the risks. For me, personally, it is the right decision at this point in my life.

ETA --- It took me so long to write this out with a few interruptions that I see prs, the OP, has also posted. I will post this quickly and come back to read and add later.


Hi Nifty624 - thank you for posting and sharing your story in such details ! Much appreciated ! Yes - it looks like we are very close in terms of our stages and time of diagnosis. My tumour is 7cm away from the anal verge though !

I have been reading some medical journals from Dr Habr-Gama and she did suggest performing local excision for patients with small residual lesion ( less than 3cm?) ! My mind was in a dazed when I saw the doctor yesterday, so depending on the results of my MRI and PET scans, I will address the possibility of a local excision too ! Thanks for the reminder and the advocacy, I needed it as I often feel "weak" on my own trying to challenge the doctors of their medical expertise !

In the same paper, it addresses challenges of performing local excision ! Did the doctor discuss it with you ? I note that your tumour is quite far up from the anal verge and perhaps a more ideal candidate for LE ?

* Healing of the rectal defects determined by FTLE (Full-thickness local excision) after neoadjuvant CRT are quite challenging and painful, particularly those closer to anal verge.

* Sphincter preservation may be compromised after performance of FTLE in this setting.

( Source: Nonoperative Management of Rectal Cancer: Identifying the Ideal Patient - Dr Angelita Habr-Gama)
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Mar 27, 2019 5:13 am

lakeswim wrote:......

I can see why some people can’t handle the anxiety of W&W. It hasn’t been that long but I have my days (and nights!!) where I believe I’m stark-raving mad for not getting it out via surgery. (My local surgeon didn’t help when I last saw her when she said, “You’re a young woman and I’d hate to see it metastasize. After all, we can’t cure all metasteases.” YIKES!!!

Only time will tell!

Jocelyn - I can’t speak for your situation, but I’m still surprised they’re not requiring chemo before considering W&W. In fact, I thought that was an expectation. But if you are in Europe, it may be different.


Hi Lakeswim - my oncologist and radiologist is against the WW route but will eventually have to respect my decision and the recommendation of the primary colorectal doctor's decision. My oncologist too said something about me being a young woman and how if I was a family of his, he would be so upset that I would rather do WW instead of radical surgery. He goes on to say that yeah sure there will be LARS but it's not really end of the world as one can start adjusting their lifestyle gradually but hey, easier said than done right ! For those with rectal cancer and aware of what LARS can do to your quality of life, you would want to give it your best shot at avoiding surgery !

My primary colorectal doctor shared that the traditional school of thought in medical science has always been about reducing mortality but times have moved on and as we get more cancer survivorship due to medical advances, the paradigm shift should gradually be moved towards preserving the quality of life and WW is on the cusp of this movement. He has emphasized to me times and again that WW is still not mainstream - at least not where I'm from.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Mar 27, 2019 5:16 am

nifty624 wrote:Jolene,
Another thing they can do with the flex sig scope is take samples for biopsy. My surgeon did that and the absence of any remaining cancer cells in those samples helped make him even more comfortable with my decision to do a LE and adjuvant chemo. Although tbh he was already saying it seemed like a perfectly sound decision after the near complete MRI and his discussions with collegaues out east who have been involved in or following clinical trials and so on.


My doc did mentioned that for him it's MRI and PET scans that will determin a WW case and that a flex scope and biopsy test is simply to confirm the case ! I believed anyone in research needs to do what they call a triangulation of data - having 3 data source in order to come to a justified conclusion.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Mar 27, 2019 5:25 am

prs wrote:Hi Jolene, if your Dr could feel your tumor site it must have been very low, just like mine. My Dr told me she didn't take a sample for biopsy because it would have involved cutting into the sphincter muscles and that could have had a long term effect on the muscle function. She also said that when the original tumor site was quite large, the odds were very low of catching any residual spec of cancer with a tiny biopsy sample, and in my case, it just wasn't worth the risk.

nifty624, thank you for your very informative post, and well done in establishing your preferred treatment and making it happen. It's so great that your Drs rallied round and are supporting your decision, I'm hoping that will happen more often as Drs become more informed about W&W.

lakeswim, I'm so sorry your Drs are not being supportive, I had a feeling they were using the fat plane thing as an excuse! The first three months or so after radiation treatment are the worst, and there's not much you can do but grin and bear it. However it will get better over time.

I know some people do the surgery because they think for sure the cancer will be gone. However there is a recurrence rate for patients who have surgery, and the side effects of that surgery can be devastating for some patients. If cost is not an issue I'd be inclined to take surveillance at the facility that offered the most support.


Hi PRS - My tumour site is about 7-9cm from the anal verge and is considered as mid-rectal. According to my oncologist, at that length only docs with long fingers could feel it and my primary colorectal doc apparently happens to have long fingers ! Lol ! That explains the site checks ! So everytime a visit to his office means a finger up the arse because he can reach mid-rectal apparently ! Lol :oops:

I just want to share that my doc mentioned that any recurrence wouldn't be due to a WW situation. The radiation performed at the beginning would have by right cut off the cancer cell supply of any spreading from the tumour site. Any mets that a patient experienced after a WW situation are mets that are likely to have occurred even before the radiation started and manifested itself only very much later, which means that even if a patient has undergone radical surgery.. .the same mets that was intended to surface will surface eventually whether WW or not.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.


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