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

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Jolene
Posts: 135
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 5:42 am

ticktock10 wrote: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


Hi Ticktock,

Congrats !! What wonderful news !!! I agree that its a very personal decision and I am fed up of people and medical professions telling me that I should go get it cut out asap ! While it's good to be alive, I don't think there is anything wrong in setting some standards to achieve quality of life too !

After reading through the boards, I realised that having a doc who provides the patient a WW option is almost akin to striking the lottery !! I'm so happy to know there are medical professions out there like your docs who keep themselves abreast of new advancement and research !

I noted from your signature that you had 6 weeks CRT in Dec 2013 and it was not until April 2014 that you are declared as complete response ? That's about 4 months apart - did your doc make you wait out 16 weeks instead of 12 weeks which is the usual cut off time for most WW ?

And you didn't have your adjuvant chemo until June after declared as CCR in April - that's about 2 months apart and I'm intrigued what happened during those 2 months ?

Any details/stories would be appreciated !
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

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 » Wed Mar 27, 2019 6:31 am

Hi Jolene,
I started CRT on Dec 2nd 2013 and finished on Jan 13th 2014.
I requested follow-up PET/MRI and they showed 'complete response' on March 4th.
Then i had discussions with my surgeon and I said I wanted to do 'watch and wait'
He referred me to a different surgeon who suggested a flex sig, which came back all clear on April 2nd.
Then more discussions and I made final decision to do 'watch and wait' on May 2nd.
My 'mop-up chemo' started on May 14th and went until August 22nd.

The surgeons all recommended the surgery of course - but the fact that I had spoken to an oncologist in the beginning (before starting CRT) made me aware of the possibility of W&W - and this prompted me to push for scans post-CRT. The surgeons would normally not have bothered with this step, as they would just proceed straight to surgery. It's an extra expense to do scans after CRT, so there isn't any point if you're going to have the surgery regardless. I respect their point of view, but I was always keen to see if the surgery could be avoided - and thankfully they agreed to do the scans. It's very tough to make such a big decision on a tight schedule, so the more information you have and the clearer your understanding of the situation in advance, the better.

In my case, after PET, MRI and flex sig all showed 'no evidence of disease' post-CRT, I felt it reasonable to proceed down the 'W&W' pathway.
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

prs
Posts: 159
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 Mar 27, 2019 9:48 am

Jolene, most Drs are not used to patients who have done their research and are advocating for a different treatment plan than the one they are proposing. Hopefully your Dr will be open minded, but if not stick to your guns, and force him to have a conversation. Once you make him realize he's not the only intelligent and informed person in the room, progress might be possible.
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: 135
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Mar 28, 2019 1:51 am

Hi all...

Quick update. Received my MRI and PET/CT results today.

1) MRI showed mostly fibrotic signals but there is a borderline/minimal restricted diffusion at the edge of the tumor which is ambiguous. The report concludes that residual tumour hence cannot be completely excluded based on this MRI. :? :? :?

2) PET scan showed no cancer activity ! Yay ???

The radiology doctors put the above two together for discussion and said while it's a 50/50 chance of residual cancer on the MRI, they are leaning towards the "no cancer activity" camp due to the PET scan. The minimal residual tumour showing on the MRI could likely be due to radiation scars that has not subsided.

3) Primary colorectal doctor will performed a flex sig and biopsy tomorrow morning. If the biopsy returns with cancer cells, then it's a no brainer for surgery. If it returns all good, then we need to have a discussion on how best to move forward with WW and the risks involves

4) Had a discussion with the doc about local excision, he is aware of the procedure but does not advocate due to the following which I have been well aware of through Dr Angelita's paper.

- side effects upon recovery / pain, leakage etc...
- in the event of surgery, it will complicate the surgery procedure and hence he won't be proceeding with it.

5) WW risks - he reminded me that there are risks that comes with the WW option - the aggression of cancer cells recurrence ! Cancer cells that were undetected and not killed off in the first round of radiation can return with a vengeance. (but that's what the ww protocol is for right - close surveillance etc..)

6) However, he just operated on someone not too long ago whose MRI and PET scans showed suspicious activity, so it was a no brainer to go under the knife. After the surgery, they detected zero cancer cells in the rectum. There is basically no sure scientific way of determining whether the minute cancer cells are lurking around or not nor a definitive scientific response on whether the rectum should go. Of course, if we are basing it on the typical standard of care, the rectum should have gone by now ! We are basically walking on the fringe with the WW movement.

I should receive biopsy results by Monday... till then, it's wait wait and more waiting ! :|
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

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

Postby weisssoccermom » Thu Mar 28, 2019 9:50 am

I had a local excision in 2007 after a complete clinical response to chemoradiation. I'm not sure what 'side effects' your doctor is talking about. Yes, I had a slight amount of pain (mine was due to the fact that the instruments were pushed against my tailbone for the duration of the surgery and I had broken that tailbone years earlier...ANY amount of pressure for an extended period of time hurt it like heck.) Most patients with a local excision have it done on an outpatient basis or stay only one night in the hospital. There's a whole lot less pain with an excision than with the LAR surgery, even if it is done laproscopically. As for leakage , etc., I had none of those things. Honestly, I'm not sure what the heck the doctor is talking about....except that it is most likely just BS to deter you from having the surgery. YES, the lymph nodes won't be harvested but the side effects.....well, I can only speak for myself, but they were next to nothing. I had my surgery on a Friday morning, was back home by Saturday morning (stayed the night due to my tailbone pain) and was grocery shopping on Sunday. BTW, mine was a full thickness excision.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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 » Thu Mar 28, 2019 10:53 am

weisssoccermom wrote:I had a local excision in 2007 after a complete clinical response to chemoradiation. I'm not sure what 'side effects' your doctor is talking about. Yes, I had a slight amount of pain (mine was due to the fact that the instruments were pushed against my tailbone for the duration of the surgery and I had broken that tailbone years earlier...ANY amount of pressure for an extended period of time hurt it like heck.) Most patients with a local excision have it done on an outpatient basis or stay only one night in the hospital. There's a whole lot less pain with an excision than with the LAR surgery, even if it is done laproscopically. As for leakage , etc., I had none of those things. Honestly, I'm not sure what the heck the doctor is talking about....except that it is most likely just BS to deter you from having the surgery. YES, the lymph nodes won't be harvested but the side effects.....well, I can only speak for myself, but they were next to nothing. I had my surgery on a Friday morning, was back home by Saturday morning (stayed the night due to my tailbone pain) and was grocery shopping on Sunday. BTW, mine was a full thickness excision.


Thanks for this, weissoccermom, it was your experience that I have found most encouraging as it seems to be closest to what I am doing and your story really encourages me.

My LE is scheduled for next week and I admit my anxiety has been rising, especially after reading the reports mentioned above.

My own doctor put it out there that I could have some issues mostly because as he said, "we have deviated from the standard of care". And that is true, so I understand that he feels it is important to mention possible complications to me because he doesn't have any data/experience with doing a LE on patients who were initially diagnosed as T3N1M0. My doctors do not offer W&W as a rule. Both the surgeon and the oncologist would have preferred if I had accepted the LAR standard of care, but thankfully they were willing to respect my request after discussions during which I think I demonstrated to them that I am choosing this path with full understanding of the potential risks. The virtual certainty of LAR Syndrome was a more compelling and decision-influencing risk FOR ME. Some patients do really well after LAR surgery, but my outlook was not nearly as rosy due to the permanent radiation-induced ileitis I am already coping with.

He did also say he thinks I am going to do great with this procedure - and that mild changes in function or longer than expected recovery still pale in comparison to the LAR for changes in function, pain or recovery. My primary care physician said I should expect some pain and possibly bleeding and not feel very good for a couple of days, but as long as I don't develop any infection or get any serious bleeding/failure of wound healing - then I should be recovering in a few days and feeling better, but will take probably a few weeks for it to heal completely and I will need to take it easy, be assiduous around care.

I know that there is a risk of local recurrence (which, as Jolene said - that's why we will follow up and watch closely) and there is always a risk of metastases, which is a risk that is there whether we choose LAR or some other approach. My personal decision was that I can live with these risks better than I can live with immediate severe loss of function and quality of life. Another person might have a different set of priorities (and a much better support system - I live alone and have virtually none) and might make a completely different decision. This is why it is so important to have access to reliable and well-supported scientific data as well as supportive medical providers so that each of us can make the best decisions for ourselves.

These decisions are complicated and I agree with Jolene that quality of life questions are at least as important as straight oncological goals. For me personally, this is the right decision.
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: 135
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Mar 29, 2019 8:39 am

weisssoccermom wrote:I had a local excision in 2007 after a complete clinical response to chemoradiation. I'm not sure what 'side effects' your doctor is talking about. Yes, I had a slight amount of pain (mine was due to the fact that the instruments were pushed against my tailbone for the duration of the surgery and I had broken that tailbone years earlier...ANY amount of pressure for an extended period of time hurt it like heck.) Most patients with a local excision have it done on an outpatient basis or stay only one night in the hospital. There's a whole lot less pain with an excision than with the LAR surgery, even if it is done laproscopically. As for leakage , etc., I had none of those things. Honestly, I'm not sure what the heck the doctor is talking about....except that it is most likely just BS to deter you from having the surgery. YES, the lymph nodes won't be harvested but the side effects.....well, I can only speak for myself, but they were next to nothing. I had my surgery on a Friday morning, was back home by Saturday morning (stayed the night due to my tailbone pain) and was grocery shopping on Sunday. BTW, mine was a full thickness excision.


Hi weisssoccermon - thanks for the LE advocacy once again. It was you who reminded me to bring the topic up to my surgeon ! We are basing the pain and risks involved with LE on one of Dr Habr-Gama's paper -

In the paper, it addresses challenges of performing local excision ! Whilst my doc has an open mind with ww, from the sound of it he is not confident of performing the LE on me and I do not want to challenge him on this aspect. He has so far been very respectful and open minded an of my inclination towards WW. I wonder if the location of your tumour is quite high up ? Mine's a mid-rectal, 7cm from anal verge. I think I would have been more confident to emphasize LE if my tumour was a little higher up ! Nifty's doctor didn't seem to think it could be an issue for him/her.

* 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
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

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 » Fri Mar 29, 2019 9:03 am

Jolene,

Just to clarify something -- my tumor was located 4.5 cm from the anal verge. Quite low, I think.

My surgeon does have concerns - he has warned me about the possibility of having to go back for an ileostomy if I cannot heal or develop infection. He did see scarring and also some healthy looking tissue when he did the flex sig a couple of weeks ago. He is respecting my request for a LE, though he would have preferred I accept the LAR.

Still, he does think I will do well.
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: 135
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Mar 29, 2019 9:07 am

I'm in a huge dilemma at the moment as I believed I will be making some major decisions next week ! Just did my sigmoid scope this morning and biopsy. Results should be out by Monday. So many thoughts going through my mind at the moment. It's gonna be a tough weekend wait !

The biopsy is now almost the determining factor of whether I should go into surgery or not. There were weak moments when I hope the biopsy would just explicitly indicate I have to go under the knife and then it becomes a no brainer situation for me. However should the biopsy returns okay - should I still do WW or go under the knife ! My emotions says WW but my brain tells me that my criteria for WW isn't going exactly as per Dr Habr-gama's list. :cry:

While PET/CT scan cleared me of any cancer activity, the MRI still has a minimal/borderline restricted diffusion (darn it!) which the report cannot conclude what it could be.

Radiology panel is also on the fence about the scans though leaning a little more towards the all clear camp. However MRI doesn't show all clear but is refute by the clear PET/CT !

After the sigmoid scope and biopsy, my doc caught the sight of a very small shallow apthous ulcer present at the tumour site, a few mm in size only. He had no idea what it could be, clipped it off and sent for biopsy too. The first thing that came to my mind was it is left over tumour residual ????? :x But if so, why didn't the PET/CT scan pick it up ? If not, then what the hell is it !!! :|

At the same time, my doc also reminded me of a most recent MSK's study in Jan 2019 which is only online and not officially published yet contradicting Dr Habr-gama's paper indicating salvage surgery survival rate is just as good whereas MSK's paper indicate that for those who go onto WW, the regrowth can come back with a vengeance and is a risk I need to be prepared. Saying that, apparently MSK's sample size excluded MRI and PET/CT scans patients which was not available for the earlier sample of patients so the sample relied entirely on just appearance of tumour and biopsy(i think!)


"For people in our study who entered the surveillance phase of watch and wait, the rectal tumor grew back 20% of the time. In every case, our surveillance caught the regrowth when it was still treatable by surgery. But these people may be at higher risk for the cancer to metastasize, or spread, to other tissues or organs."


Source: https://www.mskcc.org/blog/how-watch-an ... ality-life


/vent

Just needed to get it out of my chest !!! :X
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

Jolene
Posts: 135
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Mar 29, 2019 9:11 am

nifty624 wrote:Jolene,

Just to clarify something -- my tumor was located 4.5 cm from the anal verge. Quite low, I think.

My surgeon does have concerns - he has warned me about the possibility of having to go back for an ileostomy if I cannot heal or develop infection. He did see scarring and also some healthy looking tissue when he did the flex sig a couple of weeks ago. He is respecting my request for a LE, though he would have preferred I accept the LAR.

Still, he does think I will do well.


Hi Nifty - ahhh your tumour is considered low then ! My surgeon has warned me all of the above and doesn't sound confident of performing it. I'm not sure if he had performed any before though as he was quoting papers from Dr Angelita's paper. To be honest I was already feeling a little mousy myself when I read about the side effects although I understand weisssoccermum's situation turned out great !

Maybe it's one last option that I could consider .................. just maybe... :|
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

weisssoccermom
Posts: 5957
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

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

Postby weisssoccermom » Fri Mar 29, 2019 9:43 am

BTW....4.5 cm is NOT considered super low.

Patients with 2-3 cm ARE considered low.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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 » Fri Mar 29, 2019 9:57 am

weisssoccermom wrote:BTW....4.5 cm is NOT considered super low.

Patients with 2-3 cm ARE considered low.



Good to know! Thanks, weissoccermom.
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.

lakeswim
Posts: 212
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 30, 2019 8:30 pm

Jolene wrote:I'm in a huge dilemma at the moment as I believed I will be making some major decisions next week ! Just did my sigmoid scope this morning and biopsy. Results should be out by Monday. So many thoughts going through my mind at the moment. It's gonna be a tough weekend wait !

The biopsy is now almost the determining factor of whether I should go into surgery or not. There were weak moments when I hope the biopsy would just explicitly indicate I have to go under the knife and then it becomes a no brainer situation for me. However should the biopsy returns okay - should I still do WW or go under the knife ! My emotions says WW but my brain tells me that my criteria for WW isn't going exactly as per Dr Habr-gama's list. :cry:

While PET/CT scan cleared me of any cancer activity, the MRI still has a minimal/borderline restricted diffusion (darn it!) which the report cannot conclude what it could be.

Radiology panel is also on the fence about the scans though leaning a little more towards the all clear camp. However MRI doesn't show all clear but is refute by the clear PET/CT !

After the sigmoid scope and biopsy, my doc caught the sight of a very small shallow apthous ulcer present at the tumour site, a few mm in size only. He had no idea what it could be, clipped it off and sent for biopsy too. The first thing that came to my mind was it is left over tumour residual ????? :x But if so, why didn't the PET/CT scan pick it up ? If not, then what the hell is it !!! :|

At the same time, my doc also reminded me of a most recent MSK's study in Jan 2019 which is only online and not officially published yet contradicting Dr Habr-gama's paper indicating salvage surgery survival rate is just as good whereas MSK's paper indicate that for those who go onto WW, the regrowth can come back with a vengeance and is a risk I need to be prepared. Saying that, apparently MSK's sample size excluded MRI and PET/CT scans patients which was not available for the earlier sample of patients so the sample relied entirely on just appearance of tumour and biopsy(i think!)


"For people in our study who entered the surveillance phase of watch and wait, the rectal tumor grew back 20% of the time. In every case, our surveillance caught the regrowth when it was still treatable by surgery. But these people may be at higher risk for the cancer to metastasize, or spread, to other tissues or organs."


Source: https://www.mskcc.org/blog/how-watch-an ... ality-life


/vent

Just needed to get it out of my chest !!! :X


Thank you so much for sharing about this study. I will have to ask my MSK surgeon about this study when I see him in May. Or before. Funny, given he told me when I saw him in February that salvage surgery is "typically" the same as original surgery.
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
Feb 19 - MRI & flex sig show tumor gone
W&W
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
*grateful*

lakeswim
Posts: 212
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 30, 2019 8:43 pm

nifty624 wrote:
weisssoccermom wrote:I had a local excision in 2007 after a complete clinical response to chemoradiation. I'm not sure what 'side effects' your doctor is talking about. Yes, I had a slight amount of pain (mine was due to the fact that the instruments were pushed against my tailbone for the duration of the surgery and I had broken that tailbone years earlier...ANY amount of pressure for an extended period of time hurt it like heck.) Most patients with a local excision have it done on an outpatient basis or stay only one night in the hospital. There's a whole lot less pain with an excision than with the LAR surgery, even if it is done laproscopically. As for leakage , etc., I had none of those things. Honestly, I'm not sure what the heck the doctor is talking about....except that it is most likely just BS to deter you from having the surgery. YES, the lymph nodes won't be harvested but the side effects.....well, I can only speak for myself, but they were next to nothing. I had my surgery on a Friday morning, was back home by Saturday morning (stayed the night due to my tailbone pain) and was grocery shopping on Sunday. BTW, mine was a full thickness excision.


Thanks for this, weissoccermom, it was your experience that I have found most encouraging as it seems to be closest to what I am doing and your story really encourages me.

My LE is scheduled for next week and I admit my anxiety has been rising, especially after reading the reports mentioned above.

My own doctor put it out there that I could have some issues mostly because as he said, "we have deviated from the standard of care". And that is true, so I understand that he feels it is important to mention possible complications to me because he doesn't have any data/experience with doing a LE on patients who were initially diagnosed as T3N1M0. My doctors do not offer W&W as a rule. Both the surgeon and the oncologist would have preferred if I had accepted the LAR standard of care, but thankfully they were willing to respect my request after discussions during which I think I demonstrated to them that I am choosing this path with full understanding of the potential risks. The virtual certainty of LAR Syndrome was a more compelling and decision-influencing risk FOR ME. Some patients do really well after LAR surgery, but my outlook was not nearly as rosy due to the permanent radiation-induced ileitis I am already coping with.

He did also say he thinks I am going to do great with this procedure - and that mild changes in function or longer than expected recovery still pale in comparison to the LAR for changes in function, pain or recovery. My primary care physician said I should expect some pain and possibly bleeding and not feel very good for a couple of days, but as long as I don't develop any infection or get any serious bleeding/failure of wound healing - then I should be recovering in a few days and feeling better, but will take probably a few weeks for it to heal completely and I will need to take it easy, be assiduous around care.

I know that there is a risk of local recurrence (which, as Jolene said - that's why we will follow up and watch closely) and there is always a risk of metastases, which is a risk that is there whether we choose LAR or some other approach. My personal decision was that I can live with these risks better than I can live with immediate severe loss of function and quality of life. Another person might have a different set of priorities (and a much better support system - I live alone and have virtually none) and might make a completely different decision. This is why it is so important to have access to reliable and well-supported scientific data as well as supportive medical providers so that each of us can make the best decisions for ourselves.

These decisions are complicated and I agree with Jolene that quality of life questions are at least as important as straight oncological goals. For me personally, this is the right decision.


Nifty624 -
As to the question of LAR syndrome - my MSK surgeon said there is no way to predict who will have a better outcome than another. (Only low tumors can predict a poor outcome. Just because your tumor is high/er doesn't mean it will be a good outcome. Or so this is how I understood it.) So, I agree that the LAR syndrome - and certainty of some level of bowel dysfunction (and possibly urinary dysfunction, in my case) was a big part of my decision for W&W. Also, one surgeon told me the LARS "wouldn't be that bad." Well, what isn't so bad to one person (who, say, might work at home or might enjoy more home-bound activities like video games or gardening or crafts) may be considered bad to someone like myself (who wants to hike, water ski, and be out and about). So, even if they could tell you what your level of LARS could be - it may be mean different things to different people!

Also, my husband keeps reminding me, in my anxious moments, exactly what you said: that surgery does not mean ZERO change of metastases. So, metastases will always be out there - lurking. Scary.

Lastly, I have to go back on this thread and revisit what you guys are discussing (this "LE" - I assume it's local excision?). I clearly missed what this is. It sounds intriguing - like a compromise between LAR surgery and W&W? My people wouldn't even do a biopsy so I am interested....

I've been wondering lately if anyone on the board ever did W&W and then couldn't stand the anxiety and then had surgery? Or anyone who had salvage surgery - and how it went? If anyone has seen this, please let me know.

Tough decisions. Sending my best to those making them now and those who have made them and are watching, waiting, and hoping....
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
Feb 19 - MRI & flex sig show tumor gone
W&W
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
*grateful*

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O Stoma Mia
Posts: 1600
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby O Stoma Mia » Sat Mar 30, 2019 10:04 pm

lakeswim wrote:I've been wondering lately if anyone on the board ever did W&W and then couldn't stand the anxiety and then had surgery? Or anyone who had salvage surgery - and how it went? If anyone has seen this, please let me know.....

Yes, I have seen it here on this board some time ago, but I can't remember exactly where.


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