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

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weisssoccermom
Posts: 5970
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 » Mon Feb 25, 2019 7:09 pm

I basically had the same as W & W (except my 'biopsy' was a full thickness excision) and I only had a CT chest/abdomen/pelvis every 6 months. I may be cynical here, but I highly doubt that you would get your insurance company to pay for an MRI every 3 months. Like the newer W&W, my protocol was not 'standard of care' so I had to jump through some hoops to get covered. Still, the insurance companies work off of what doctors/panel of doctors have recommended as the 'standard of care' follow up and an MRI every 3 months is NOT standard. Now, if there was a reason to have one that often, that might be a difference but since the implementation of ACA, insurance companies have to justify their costs, etc. so they are even more tight with their approvals. Still, everything they do is based upon what doctors approve of.

I agreed to the following follow up when I said no to the LAR surgery (had chemoradiation, excision and more chemo)

every three months: either a flex sig OR a rectal ultrasound (they alternated)
CHEM/CBC/CEA
Every 6 months: CT scan - chest/abdomen/pelvis (I wouldn't accept anything less than those three body parts)

The above was for the first two years.

I'm honestly trying to remember what year 3 - 5 was but remember that I still had blood work every 3 months which eventually got stretched to every 6 months
I believe my CT scans were still every 6 months until about year 3.5 - when they were stretched out to every 9 months (I balked a little about that one)
By year 4, the rectal ultrasounds were stopped but I still had a flex sig every 6 months.

First colonoscopy was one year out from my excision: I had a benign polyp so follow up was at TWO years (standard). After that, I went to THREE years and assuming no polyps (either benign or precancerous), I went to the FIVE year plan. Even so, my surgeon wasn't willing even at FIVE years to let me go that long. Every 2.5 years I had a modified flex sig in between my scopes.

Honestly, the surveillance was a pain but I didn't want the LAR surgery and I was wiling to do whatever I needed to. I'm now 12+ years out from my diagnosis and I think my surgeon has finally agreed to stop the flex sigs and just go for the full scope every five years. My GP now does my blood work but since the CEA was never a good indicator for me (0.5 at diagnosis even with a big tumor), we dropped that as well. I still get a full CHEM panel as well as a CBC, Vit E and thyroid every year at my physical. At five years, my insurance company said no to any more CT scans but said that IF a chest X-ray were to show something they would approve the CT....seriously???

Good luck with your surveillance.
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

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 » Tue Feb 26, 2019 8:41 am

weisssoccermom wrote:I basically had the same as W & W (except my 'biopsy' was a full thickness excision) and I only had a CT chest/abdomen/pelvis every 6 months. I may be cynical here, but I highly doubt that you would get your insurance company to pay for an MRI every 3 months. Like the newer W&W, my protocol was not 'standard of care' so I had to jump through some hoops to get covered. Still, the insurance companies work off of what doctors/panel of doctors have recommended as the 'standard of care' follow up and an MRI every 3 months is NOT standard. Now, if there was a reason to have one that often, that might be a difference but since the implementation of ACA, insurance companies have to justify their costs, etc. so they are even more tight with their approvals. Still, everything they do is based upon what doctors approve of.

I agreed to the following follow up when I said no to the LAR surgery (had chemoradiation, excision and more chemo)

every three months: either a flex sig OR a rectal ultrasound (they alternated)
CHEM/CBC/CEA
Every 6 months: CT scan - chest/abdomen/pelvis (I wouldn't accept anything less than those three body parts)

The above was for the first two years.

I'm honestly trying to remember what year 3 - 5 was but remember that I still had blood work every 3 months which eventually got stretched to every 6 months
I believe my CT scans were still every 6 months until about year 3.5 - when they were stretched out to every 9 months (I balked a little about that one)
By year 4, the rectal ultrasounds were stopped but I still had a flex sig every 6 months.

First colonoscopy was one year out from my excision: I had a benign polyp so follow up was at TWO years (standard). After that, I went to THREE years and assuming no polyps (either benign or precancerous), I went to the FIVE year plan. Even so, my surgeon wasn't willing even at FIVE years to let me go that long. Every 2.5 years I had a modified flex sig in between my scopes.

Honestly, the surveillance was a pain but I didn't want the LAR surgery and I was wiling to do whatever I needed to. I'm now 12+ years out from my diagnosis and I think my surgeon has finally agreed to stop the flex sigs and just go for the full scope every five years. My GP now does my blood work but since the CEA was never a good indicator for me (0.5 at diagnosis even with a big tumor), we dropped that as well. I still get a full CHEM panel as well as a CBC, Vit E and thyroid every year at my physical. At five years, my insurance company said no to any more CT scans but said that IF a chest X-ray were to show something they would approve the CT....seriously???

Good luck with your surveillance.


What a good idea a "full excision biopsy" I wonder why they don't always do that ? Xxx Annie xxx

nifty624
Posts: 22
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Sun Mar 03, 2019 12:55 pm

Hello everyone! I am a newly registered member. I have been reading this thread and bookmarking information. The experiences of peter and mozart and weisssoccermom have given me new hope! I had no idea anything like the W&W approach was possible, and I am trying now to figure out how to talk to my surgeon about it. I am scheduled for LAR surgery on April 1.

Briefly, I was diagnosed with stage 3 rectal cancer in November 2018. T3-N1-M0. I've undergone the chemo/radation neoadjuvent therapy (which ended on Jan 22) and will have a follow up MRI this Wednesday March 6. I unfortunatley suffered radiation enteritis which landed me in hospital around New Year (half way through the radiation/chemo) at which time a CT scan indicated "significant reduction" in the size of my tumor. The docs said it looks like I have been having a good response, although I don't think anyone mentioned the possibility of "complete response" . I hope after the MRI, there will be further clarification and since it is now 6 weeks since the last radiation (and significant reduction was noted at just halfway through the treatment) I am very hopeful that the tumor will have shrunk away.

Nevertheless, my surgeon did not mention any possibility of avoiding the LAR. No mention of a possible W&W approach as an option should I qualify. I asked about the possiblity of transanal excision (which he had mentioned before the MRI confirmed T3 -- orginal CT scan suggested a T2) and he is apparently an expert at TEM. However, he said no the LAR is the "gold standard" treatment.

Having found this W&W account by prs and others, and then reading the journals and the studies that are available, I am eager to talk to the surgeon about trying this, perhaps with a TEM first, as a precaution and as a fuller biopsy tool.

A long story to get to my point and question! I don't know if my current surgeon will agree to this approach and I do not know if the current team will agree to support me if I decide I want to pursue this approach. So, my question to everyone here is this: Does anyone know of a surgeon or practice/hospital in the Chicago area which offers the Habr-Gama W&W approach? I am on my own here with no family or network to help me and I must advocate for myself-- and quickly!

Any helpful suggestions would be much appreciated.

And thank you so much Peter for starting this thread a few years ago and for all the other people who have added so much to it. You literally gave me hope at a very low point.
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: NED
Chest port installed 04/29/19
(FOLFOX) begins 05/01/19.
10/02/19 MRI -> NED
11/15/19 flex sig -> NED

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Mar 03, 2019 1:58 pm

Not sure how to post link to specific page but on page 13 of this thread, someone lists facilities who do W&W. There’s a center in Minnesota on the list?
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)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

nifty624
Posts: 22
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Sun Mar 03, 2019 2:15 pm

Thank you lakeswim, I did see that. I am hoping there might be a provider in the Chicago area and I'm not sure how to look for one. I've tried searching Habr-Gama W&W strategy-Chicago and similar, but nothing so far with those search parameters.

It's tough when you are a stranger in a city and have no network to ask --- so often people hear about options through the grapevine.

I've been reading the whole thread and I wish you all the best in your current decision-making! Hope your cold is getting better.
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: NED
Chest port installed 04/29/19
(FOLFOX) begins 05/01/19.
10/02/19 MRI -> NED
11/15/19 flex sig -> NED

weisssoccermom
Posts: 5970
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 » Sun Mar 03, 2019 3:13 pm

I can't speak to the W & W approach but you might want to look at:

Loyola University and University of Chicago.
Both facilities utilize the TEM approach and you might find a surgeon there who is more amenable to that particular avenue....a TEM, chemo with meticulous follow up.
I would suggest googling both of those medical facilities....finding their colorectal surgery department and reading the expertise of the surgeons associated with that department. One or more should be a TEM or possibly a W&W surgeon. Considering that they have the TEM equipment, someone there is an 'expert' at it. It is at least worth a try.

Good luck. BTW, for what it is worth, when I was in treatment, it took me a LONG LONG time to find a surgeon who was willing to go against the 'standard of care" (LAR surgery). I was diagnosed in June 2006 but didn't have my excision surgery until April 20, 2007....a full 9 months later. Don't give up BUT....be prepared for most surgeons to balk at the idea of anything other than 'the standard of care' surgical options. My surgeon who agreed to the excision/meticulous follow up did so begrudgingly. She, like all the others, tried to talk me into the LAR which I did not want. In the end, though, it all worked out.

I might also suggest that while you are trying to find a surgeon/center that might consider W & W and/or the excision coupled with W & W, you might talk to your oncologist about more chemo instead of doing nothing. That is the route that I took and, at least for me, it all paid off in the end.
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

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Mar 03, 2019 3:20 pm

Nifty624 - W&W is not an accepted protocol/treatment for Rectal Cancer so, as far as I know, only a few major cancer centers (esp those doing clinical trials) are "on board" with the strategy as it's so new. In fact, @MSK they still "prefer" you are on a trial to do W&W given the rigor of the protocol.

Also, I was under the impression (perhaps I am wrong - I don't know) that most patients doing W&W have done *both* chemo and chemo/radiation. (I feel like I read somewhere that European doctors try to avoid the chemo, if they can - so maybe European patients doing W&W may be an exception - but don't quote me - I don't know this for sure.)

There are many here more knowledgeable about this than I am and maybe they will chime in!
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)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

BMs for W&W-ers

Postby lakeswim » Sun Mar 03, 2019 3:37 pm

PRS, SKB, Weisssoccermom, and other W&W-ers:

Food/nutrition: Did you change your nutrition when you decided to do W&W? Add supplements?

Fitness: Did you do anything specific exercise-wise?

BMs: How did radiation change your BMs (if they changed) or tolerance to foods (ie, spicy, etc.) in the few months to long term after you finished radiation? Isn't is safe to assume that an irradiated rectum doesn't manage things (like spicy food, for instance) the way it once did?

My BMs have been porridgey and sticky for many, many years. Once I was diagnosed, I assumed that may have been a sign of the RC. When I finished chemo/radiation in Nov, I had picture-perfect firm stool (though I only ate bananas, rice, and applesauce for the 6 weeks of radiation to avoid diarrhea - so that may have helped). Anyway, since I started eating somewhat normally again (in December), my stool has gone back to it's typical porridgey nature. Since then, I've had 2 MRIs and 2 flex sigs so I know the tumor is not back and I know the state of my BMs doesn't necessarily mean anything. But it still worries me and I don't want to spent the foreseeable future freaking out over every BM. Since Jan 1, I have gone gluten-free (as I have been told on 2 occasions in my life that I should be G-F - and I'll try anything to ensure I stay tumor-free) but it doesn't change my stool. So, I am just curious whether radiation changed things for you in terms of what you could eat and how it affected your BMs (not during radiation but in the months to year afterwards). I am planning to see a gastro (to set up my next colonoscopy too) but was curious about those who endured radiation but no surgery and what their rectum/BMs were like afterwards longer term.

Thanks!
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)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

weisssoccermom
Posts: 5970
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 » Sun Mar 03, 2019 5:33 pm

PRS, SKB, Weisssoccermom, and other W&W-ers:

Food/nutrition: Did you change your nutrition when you decided to do W&W? Add supplements? No to the first question. I don't drink.....never really did except LONG LONG ago in college. I don't smoke....never did that either. Yes, I still love my red meat and eat it whenever I want. The studies that so many people reference clearly state that LONG term use of EXCESSIVE (if you read the entire study, they define excessive generally as more than 20 ounces per week/all the time) may be linked to cancer. I don't eat red meat every day so I am not going to worry about it. Other foods....well, my take is that I didn't do all of this do be told that I can't eat whatever I want. Am I stupid? No. Could I eat better? Sure I could. However, I'm not going to go nuts and start juicing, eating weird things or eating stuff that frankly I don't like just because it 'might' help. As for supplements, I only added resveratrol to my daily vitamin.

Fitness: Did you do anything specific exercise-wise?Again, nope. I know that there have been studies indicating that exercise appears to be beneficial for those who have had cancer...with respect to recurrence... but honestly, I didn't do anything drastically different.

BMs: How did radiation change your BMs (if they changed) or tolerance to foods (ie, spicy, etc.) in the few months to long term after you finished radiation? Isn't is safe to assume that an irradiated rectum doesn't manage things (like spicy food, for instance) the way it once did? Instead of being super constipated, because of the tumor, I was now able to go to the bathroom 'normally'. When I say 'normal', I mean that I have 1 -3 BM's per day, depending on how much I eat. Obviously, the more that I eat in a particular day, the more times I might go to the bathroom. I have no real issues except for corn/popcorn. I just don't digest it well but in all fairness, I had issues with it prior to my diagnosis. No, it's not safe to assume that the rectum has issues with spicy food, etc. because the rectum is just a storage area. Your intestines might be irritated due to the radiation and that's where your issues with spicy foods/hard to digest foods would come into play....not in your rectum. As I said earlier, I'm 12+ years out from my diagnosis and almost 12.5 years out from the end of my radiation. I can eat just about anything I want. I've become lactose sensitive but I have no idea if that's from the radiation or not.....it's not uncommon as we get older that our bodies react differently to different things we eat/drink...and lactose is one of those that is commonly referenced. Corn/popcorn are NOT my friends nor are high fatty foods. Then again, I have no gallbladder and it's not uncommon for people who have had their gallbladder removed to have GI issues when they consume a high fat meal. Most of the time....no problems BUT it can happen especially when a lot of foods like fettucine alfredo are concerned (but dang, love the taste!). Long story short....except for the fact that radiation somewhat affected my 'pushing ability', it hasn't changed me in any way that I am aware of. Sure, maybe most people only go once a day....my attitude is so what if I go X 2 or even 3 times? IMO, it is better than going a whole lot more which was what I was concerned about with the LAR surgery. My take is this. With my excision and followup care, I still have a rectum. Had I had the LAR, most, if not all of my rectum would have been removed and I would have been reconnected. That wasn't something that I (not saying you shouldn't do it...it just wasn't for me) wanted to do. Your intestines aren't meant to be the storage facility that your rectum is and I just didn't want that particular surgery.

My BMs have been porridgey and sticky for many, many years. Once I was diagnosed, I assumed that may have been a sign of the RC. When I finished chemo/radiation in Nov, I had picture-perfect firm stool (though I only ate bananas, rice, and applesauce for the 6 weeks of radiation to avoid diarrhea - so that may have helped). Anyway, since I started eating somewhat normally again (in December), my stool has gone back to it's typical porridgey nature. Since then, I've had 2 MRIs and 2 flex sigs so I know the tumor is not back and I know the state of my BMs doesn't necessarily mean anything. But it still worries me and I don't want to spent the foreseeable future freaking out over every BM. Since Jan 1, I have gone gluten-free (as I have been told on 2 occasions in my life that I should be G-F - and I'll try anything to ensure I stay tumor-free) but it doesn't change my stool. So, I am just curious whether radiation changed things for you in terms of what you could eat and how it affected your BMs (not during radiation but in the months to year afterwards). I am planning to see a gastro (to set up my next colonoscopy too) but was curious about those who endured radiation but no surgery and what their rectum/BMs were like afterwards longer term. You have to do what is best for you. If you feel that you want to go gluten free....by all means do it. If going gluten free isn't changing anything for you with respect to GI issues, then don't do it if you don't want to. The facts are simple. IF you are going to have a recurrence, you're going to have a recurrence. We have had people on this board who did all the right things.....ate well, didn't smoke or drink, exercised like they were supposed to and yet they still got cancer and/or had a recurrence. I would love to tell you that just do this or that and you won't have a recurrence but I can't.....and no one else can either. Only YOU can decide what you are willing to do. My only advice to you is that even if you get into a W&W program or have an excision....PLEASE....PLEASE....talk to your ONCOLOGIST (not the surgeon) about having some follow up chemo. THAT is worth it....because then you will know that you have done everything you could have to ensure that you remain cancer free. Best of luck in your hunt for the surgeon who are looking for.

Thanks!
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: 22
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Sun Mar 03, 2019 6:22 pm

Thanks lakeswim and weissoccermom for these informative replies.

lakeswim, I will look into Loyola. Im not sure but I htink my current group is affiliated with them in some way, not Stritch but somehow a relationship. Its another Catholic hospital group, anyway. My current surgeon actually IS an expert at TEM and in fact he teaches it to residents. He is very proud of his expertise. That's one reason why I am hoping if I speak to him about it again, he will reconsider and perform the TEM.

I plan to make appointments with my oncologist and the surgeon ASAP tomorrow morning when the offices open. MOst importantly I want to talk to the oncologist and see if she will support me and oversee my chemo protocol even if I decline the LAR. I hope she will be supportive!

My biggest fear is that the doctors will be annoyed that I am questioning the "gold standard" and may "fire" me as a patient. :cry:

weissoccermom, yes, I took your words about the extra chemo very much to heart as I was reading this thread yesterday and I intend to do exactly that. I just need an oncologist who will help me do it!

Lakeswim, re your questions about bowel/rectal function after radiation. I suffered a radiation injury (I will probably have permanent ileitis, unfortunately). Never had any digestive issues before.
So, 5 weeks post nCRT, my bowel and rectal function is almost totally normal (although due to scarring I have some pain on evacuation, but it is bearable). I have eaten anything I like, and have had no serious issues. The ileitis, which was ferocious and uncontrolled without opium in January, has no settled down and is well-controlled with lomotil 2x daily. I very much hope for this to continue, but I feel great!

wessoccermom, In my reading, I did come across a study review that mentioned that the TEM might cause worse outcomes later for people who eventually need a LAR and that there can be negative effects on function too. I found another reveiw, however, that said it ought to be considered for people in our situation as a promising way to go. I was so encouraged by your story, but that journal article made me pause and wonder if the biopsy would be worth loss of function - sicne that is hwy I want to avoid the LAR. Do you think perhaps it had something to do with the position of your tumor that your outcome was so good after the TEM?
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: NED
Chest port installed 04/29/19
(FOLFOX) begins 05/01/19.
10/02/19 MRI -> NED
11/15/19 flex sig -> NED

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Mar 03, 2019 6:41 pm

Hi Weisssoccermom. Thanks for all that info and details. I had TNT (chemo upfront and then chemo/Rad). I don’t believe additional chemo is part of W&W protocol (but I agree that chemo should be part of equation before W&W!).

I’ve aiways been a healthy eater (stopped eating red meat when I was 18) and my husband is a vegetarian (so we eat healthy!) and I was always very fit so who knows what caused my cancer. I believe it may have been inflammation from my diet (given I had leaky gut 2x) which is why I’m particularly interested in dietary changes to avoid further inflammation.
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)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

nifty624
Posts: 22
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Sun Mar 03, 2019 7:48 pm

lakeswim wrote:Hi Weisssoccermom. Thanks for all that info and details. I had TNT (chemo upfront and then chemo/Rad). I don’t believe additional chemo is part of W&W protocol (but I agree that chemo should be part of equation before W&W!).

I’ve aiways been a healthy eater (stopped eating red meat when I was 18) and my husband is a vegetarian (so we eat healthy!) and I was always very fit so who knows what caused my cancer. I believe it may have been inflammation from my diet (given I had leaky gut 2x) which is why I’m particularly interested in dietary changes to avoid further inflammation.


Totally understandable!
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: NED
Chest port installed 04/29/19
(FOLFOX) begins 05/01/19.
10/02/19 MRI -> NED
11/15/19 flex sig -> NED

mozart13
Posts: 154
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Sun Mar 10, 2019 7:01 pm

Original W&W approach included only chemo/rad, it has evolved since than, now is call TNT (total neoadjuvant chemotherapy), includes chemo than chemo/rad, or chemo/rad than chemo, not sure which order is better.

There was big study at Memorial Sloan, I think it finished back in Nov/2018

Here is the link to their latest article :
https://www.mskcc.org/clinical-updates/ ... r-patients

JAMA from jan:
https://jamanetwork.com/journals/jamaon ... le=2720474

Some people with T1-3N0M0 are over treated as per JAMA, but how does one draw the line ?
https://jamanetwork.com/journals/jamasu ... le=2720473
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!

Jolene
Posts: 159
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 9:35 am

Hello all - it's been 12 weeks since I completed my CRT !

My doc is pro WW and I was up for a follow-up check just this morning ! He felt only a 5mm "something" upon a quick rectal check which could be scarring but of course it wouldn't mean anything without another MRI and PET. I have been responding very well to radiation according to him.

Did the MRI this afternoon and will be doing a PET/CT tomorrow morning and then returning to see the doc again on Thursday ! By end of the week, all the scans should determine whether I'm CCR. If so, we will proceed to a flex sig and biopsy test for official confirmation. If not, it would be straight to surgery. He mentioned that 12 weeks is the most he would wait and it is crucial to determine surgery (or not) soon.

The wait has been agonizing. I broke down at the doc's office today as he was preparing me for the surgery pathway if it comes to that.

The next 2 days are going to feel like forever !!!! :(

When I was about to leave the MRI room, the MRI doctor's assistant came round to reconfirm several times whether I had any radiation or chemo done between the last MRI (mid feb) and the current MRI (end March). What's the relevance I wonder ? I haven't had anything done though and I had mentioned that several times ! One can only hope that he is astonished by seeing a CCR on his screen !!! Lol !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

prs
Posts: 173
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 12:13 pm

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?
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


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