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

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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 » Tue Jun 16, 2020 2:51 pm

Hi Hopepray,

I am so glad for you that you've apparently had a complete or near complete response to the neoadjuvant therapy! It sounds like you have reason to be optimistic.

When you say "get the surgery", what surgery is being recommended to you? I understand that the usual recommendation is a Lower Anterior Resection (LAR) and that is a major surgery with a lot of ramifications for your future health, organ function and so on. Another possibility is a local excision of any scar tissue and an attempt to grab a lymph node, plus some margin for testing. This LE (local excision) procedure would be called a TAMiS procedure. It is far less radical than the LAR and less likely to leave you with ongoing issues around organ function, colostomy, etc.

I think you will have to weigh up the risks and make your decision. I was in almost exactly your position in early 2019 after my nCRT with a near complete response. I was scheduled for the LAR, as that was the recommended treatment for T3N1M0 (without consideration of response to nCRT and without any W&W protocol). My surgeon never even mentioned the possibility of a LE surgery or W&W.

As the surgery date approached, I was reading as much as I could about what to expect after the LAR, and I was concerned. I looked for other possible approaches and found several studies on LARS, surgical and oncological approaches to rectal cancer, W&W and this thread. I decided to speak to my surgeon about possibly performing a TAMiS procedure instead of the radical LAR. I was (and am) aware of the potential of recurrence, but I decided that was a risk I am prepared to take in order to keep my rectum and avoid the loss of that organ and possibly loss of continence etc. (NOTE: I had already suffered a radiation injury from the nCRT resulting in permanent ileitis - so I have now had experience of the digestive upset, urgency/threat of incontinence and other problems, which took time to get under control. With that injury, my risk of LARS (complications syndrome after a LAR procedure) was higher - and for me, that risk was already too high).

Luckily for me, although my surgeon said that the LAR was the "gold standard" procedure, he was open to my request and in fact had done the local excision for another patient 4 years previous (and the man was still cancer free). My surgeon in fact is a local expert on that procedure and teaches it to other surgeons, so I was really lucky. He agreed to preform the TAMiS, provided that after a pre-surgical flex sigmoidoscopy he could confirm that my response had been as reported after the MRI (nearly complete with just some remaining scar tissue or possibly a small fragment of tumor remaining) AND if he could see that he could perform the surgery getting sufficient margins. We did the flex sig, he was satisfied and we went ahead with the LE in early April.

I had the chemo port installed in late April and began the clean up chemo on May 1. I had 3 full chemo infusions at full dosage over 5 weeks at which point my oncologist paused the chemo due to my extreme weight loss and low WBC in labs. In August, follow up tests showed NED, and the oncologist decided it was OK to remove the port. I had a follow up MRI in October2019 and another flex sig with biopsy in November2019. All clear.

My spring 2020 follow ups were delayed due to covid and I am now scheduled for the MRI on July 6 plus labs and a televisit with the oncologist. I am in the process of trying to schedule a colonoscopy for July as well, since we blew past the March flex sig appointment (covid) and now I am due for the colonoscopy.

I feel great and hopefully all is still well. I've regained the lost weight, my labs were almost back to normal in February at my annual checkup with primary care physician (wbcs still a bit below normal), and my body feels mostly normal except for the lingering ileitis symptoms which I am able to manage now with over the counter meds most of the time and only resort to prescription meds in a bad flareup (not since January).

It's not an easy decision, Hopepray. You have to make the one that is right for you. For me, living alone and having no one nearby to help me, I felt (and still feel) that it was better for me to go the route I could manage best and take the risk. Reading about W&W helped me gain confidence about that decision.

NOTABLY: After the surgery, my surgeon said that he felt that cases like mine might actually be better treated with a LE as I had opted to do - and he had been in discussions with fellow surgeons out east who were coming around to that point of view. After the November flex sig, he told me that he was now very glad indeed that I had chosen to go the LE route.

Good luck with your decision, Hopepray! I hope you continue to do as well as you've been doing so far.
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

prs
Posts: 169
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 Jun 17, 2020 4:03 pm

Hopepray wrote:In a dilemma myself after onc surgeon says get surgery on the safer side. As biopsy during flex sig following a neoadjuvant or preop chemoradiotherapy(1500mg cap per day plus 50.4 gy in 28 days) said negative for disease, even an mri and pet ct done four months apart agree.
However I am a bit unsure now as to what approach to take. The docs both medical and surgical say we would say get surgery but the decision lies with you.

Hi Hoperay, great news that you had a complete, or near complete response. Also nifty624 has offered you some very useful advice, and a third alternative of much less invasive surgery!

I'm not quite sure how long it has been since you finished radiation, but I know my surgeon on the same day she told me I'd had a CCR, also recommended I start mop up chemo treatment immediately. If there are any stray cancer cells floating around in your system, it's probably better to hit them with the chemo sooner rather than later.
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

Hopepray
Posts: 16
Joined: Fri Feb 14, 2020 9:48 pm

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

Postby Hopepray » Thu Jun 18, 2020 3:45 am

Thx nifty624 and prs for your responses, we have been advised LAR as well, however the second surgeon we met says we are a good candidate for W&W and need to follow up with investigations after 2 months from today which puts us at mid of August. After that if all clear, then it would be every 3 months upto an year. Yes, it's a dilemma indeed, the first surgeon thought about it and ordered a biopsy during colonoscopy as he saw just the scar tissue however he opines that nothing can be said for certain and that cancer cells can become aggressive after a treatment like CRT so it's safe to get a surgery. This is the one playing in my mind now. However we haven't been advised any mopup chemo yet.

nifty624 good luck with your upcoming scans etc. Hope it is all NED for you.


prs wrote:
Hopepray wrote:In a dilemma myself after onc surgeon says get surgery on the safer side. As biopsy during flex sig following a neoadjuvant or preop chemoradiotherapy(1500mg cap per day plus 50.4 gy in 28 days) said negative for disease, even an mri and pet ct done four months apart agree.
However I am a bit unsure now as to what approach to take. The docs both medical and surgical say we would say get surgery but the decision lies with you.

Hi Hoperay, great news that you had a complete, or near complete response. Also nifty624 has offered you some very useful advice, and a third alternative of much less invasive surgery!

I'm not quite sure how long it has been since you finished radiation, but I know my surgeon on the same day she told me I'd had a CCR, also recommended I start mop up chemo treatment immediately. If there are any stray cancer cells floating around in your system, it's probably better to hit them with the chemo sooner rather than later.


Prs we finished CRT 28th March 2020, so it's been 11 weeks after treatment, and now we are thinking of doing the mop up chemo. Yes stray cancer cells are the worry for us as well, especially since it looked like 1 Node was involved in the workup investigations after the first DX. Is mop up or Adjuvant Chemotherapy a standard approach or more like a good to have treatment ?
Caregiver to mom
54 y, dx 2/20, T3N1B Upper Rectal CA,14 cms from AV
2.5 x 1.3 cm, base 1.5cm
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20
CT and MRI show the tumour + Ground Glass Nodule Lung + Hemangioma Liver.
Grade 1 Tumor
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma.
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapOX 3x begin 9/5/20

prs
Posts: 169
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 » Thu Jun 18, 2020 3:15 pm

Hopepray wrote:Prs we finished CRT 28th March 2020, so it's been 11 weeks after treatment, and now we are thinking of doing the mop up chemo. Yes stray cancer cells are the worry for us as well, especially since it looked like 1 Node was involved in the workup investigations after the first DX. Is mop up or Adjuvant Chemotherapy a standard approach or more like a good to have treatment ?


I believe mop-up chemo is the standard treatment. Also if you read this thread from start to finish you will find we had two or three cases of W&Wers who had a recurrence. All of those patients did not have the mop-up chemo, and all of them regret they were either not offered chemo, or chose not to have it.

If I'm not mistaken, I believe a lot of patients who have the surgery also have mop-up chemo.
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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CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Thu Jun 18, 2020 7:14 pm

prs wrote:If I'm not mistaken, I believe a lot of patients who have the surgery also have mop-up chemo.

Depending upon Stage, location, grade, mets or other "questionnables" I would have to say the answer is generally
YES to adjuvant chemo of some sort after resection.....
SO you are not mistaken !!

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

Hopepray
Posts: 16
Joined: Fri Feb 14, 2020 9:48 pm

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

Postby Hopepray » Fri Jun 19, 2020 9:49 am

CRguy wrote:
prs wrote:If I'm not mistaken, I believe a lot of patients who have the surgery also have mop-up chemo.

Depending upon Stage, location, grade, mets or other "questionnables" I would have to say the answer is generally
YES to adjuvant chemo of some sort after resection.....
SO you are not mistaken !!

Cheers
CRguy


Thx CRGuy, I have a vague question "Can cancer become more aggressive if anything remains after preop CRT especially if no surgery is done and W&W is followed." for which I didn't find good answers from my search in the forum. Perhaps you have seen such posts? Why I got this question is because one of the surgeons who said we need to get surgery mentioned this!
Caregiver to mom
54 y, dx 2/20, T3N1B Upper Rectal CA,14 cms from AV
2.5 x 1.3 cm, base 1.5cm
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20
CT and MRI show the tumour + Ground Glass Nodule Lung + Hemangioma Liver.
Grade 1 Tumor
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma.
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapOX 3x begin 9/5/20

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 » Fri Jun 19, 2020 12:56 pm

Hopepray,

It's my understanding that cells are cells, so the nature of them probably would not change. There's often no way to tell if a cancer is especially aggressive or not until a little time has passed. Obviously, an aggressive one will return quickly after CRT if any cells remain at all - and therefore be detected quickly and identified as aggressive. While less aggressive ones (or if all the cells were very localized and therefore killed by the CRT completely) would not recur, or at least not for awhile.

So, I think it would not be that the nature of the cells would change - ie. they don't get "more" aggressive after CRT - but that a quick recurrence after CRT would lead to the understanding that the cancer is an aggressive one. (Edited to add): What I mean is, the original cancer may be understood to be aggressive if it recurs quickly after CRT -- not that it CHANGES to become more aggressive because of the CRT. I think some surgeons put that incomplete idea out there because in their calculation, by performing the LAR< they feel they improve the chances of getting all the cancer cells (as long as they are localized) and therefore even if it is aggressive, there will be none left. From an surgical/oncological standpoint, that's probably what they mean by "gold standard" while from a patient's perspective it may not be that simple. Cells could already be outside the localized area. The cancer might NOT be aggressive. The LAR could be a cure OR it could be an unnecessarily radical treatment for something that either might not have been aggressive or might not even be caught by that surgery. So there's a lot more to consider than just the surgeon's perspective. That's one of the things my surgeon said to me - he was glad I took the initiative because as he said his only job is to focus on that original tumor and not so much on the full human being whose body is around it. That's up to US to think about and weigh up the pros and cons when deciding how to proceed.

It is my further understanding that mop-up chemo is the usual standard of care for people who have had surgery, too.

If you decide to go the W&W route, I'd encourage you to ask about folfox or similar chemotherapy. As mentioned upthread, in our very small sample, the two people who had recurrences did not have the mop up chemo.
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

User avatar
CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Jun 19, 2020 5:29 pm

Hopepray wrote:Thx CRGuy, I have a vague question "Can cancer become more aggressive if anything remains after preop CRT especially if no surgery is done and W&W is followed." for which I didn't find good answers from my search in the forum. Perhaps you have seen such posts? Why I got this question is because one of the surgeons who said we need to get surgery mentioned this!


My take : with cancer anything is possible ... it does NOT play by the rules :twisted:
My short answer : "can" it become more aggressive ... I would say it is possible.
WILL IT ? ... also possible BUTT not necessarily a certainty from what I know.

Any potential cell division phase of tumor growth will produce a number of changes to the tissues.
Some will respond to chemo, some to Radiation and some will be in a phase which may not be particularly susceptible to treatment
AT THIS TIME .... BUTT may continue to grow until they become detectable ( clinical signs, imaging, blood tests, physical exams etc. )

Which is the why of doing surgery as first line therapy for some situations = get as much removed as possible so there is little to none left to regrow.

All this depends upon staging, grade, location, genetics etc etc etc SO I suspect there may be no single clear cut answer from the Docs.
Each patient needs their own situation reviewed by their own experts.

Get as much input from the Docs as you can and then make your own best decision based on what you are comfortable with going through.

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

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jun 19, 2020 10:49 pm

Hopepray wrote:
Prs we finished CRT 28th March 2020, so it's been 11 weeks after treatment, and now we are thinking of doing the mop up chemo. Yes stray cancer cells are the worry for us as well, especially since it looked like 1 Node was involved in the workup investigations after the first DX. Is mop up or Adjuvant Chemotherapy a standard approach or more like a good to have treatment ?


I'm a newbie WW in comparison to a few of the veterans on here but I was declared complete clinical response after waiting out for about 12 weeks under radiation. There are recent papers out there that have suggested the waiting time could have been stretched even up to 16 weeks for a complete response.

While my colorectal doctor/surgeon was pro WW from day 1, he would not comment on anything related to mop-up chemo and that it's a conversation strictly between me and the oncologist. I later understood why because the onocologist explained that apparently there are not enough data for the doctors to warrant a mop-up chemo procedure FOR WW-ers. So what the oncologist did was to explain to us clearly the concept of a mop-up chemo in context of someone who had the surgery (that they have enough data to make such claims), and left us to decide whether we would want to do the mop-up chemo since my tumour has disappeared after radiation. I decided to go ahead and I could tell that the oncologist was actually delighted by the decision. Unlike my colorectal surgeon, the oncologist was never pro WW from day 1 but respected my decision to go WW nevertheless. I sensed a sigh of relief from him when I decided to go for the mop-up chemo.

I had a number of advice from this board and the view is that as a WW-er, by doing the mop-up chemo, i have tried everything available to me and even if there is a recurrence I would never have to live with a "what if I did the mop-up chemo" or "was it because I didn't do the mop-up chemo".

Seeing as WW is still not that mainstream in the field of rectal cancer, doctors are hesitant to suggest anything without enough proven data. That could be the case with your healthcare team.

Adjuvant chemo is definitely not standard for WW-ers but I also wouldn't say it is simply a good to have. Personally, it's a "I've tried everything that is available to me so I don't live to regret anything" move. I'm also quite convinced by the explanation of stray cancer cells lurking around that could not be caught by any machine. If someone who had gone through a surgery warrants a mop-up chemo, it makes sense all the more for someone who hasn't done the surgery to go for it too. Saying that, doctors don't operate on "what makes sense". It seems like they will make medical suggestions only when there are enough proven scientific data. As of now, there simply isn't enough data to represent the mop-up chemo decisions of WW-ers.
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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Hopepray
Posts: 16
Joined: Fri Feb 14, 2020 9:48 pm

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

Postby Hopepray » Mon Jun 22, 2020 9:40 am

Thx CRGuy and Jolene for your valuable responses.

For now we are leaning towards the surgery route after talking to few medical / surgical oncos.

Also, the burden of Covid19 weighs on our mind should we go the surgical route immediately or wait few months (We are in India where covid19 has now started to go up in nos, ) and decide to spend a week after that in hospital.

Good thing we have heard is the surgical onco thinks a temp ileo doesn't look necessary looking at the scar tissue after preop nCRT.

He also warns us that going the W&W way is no certainty with up to 30%-40% recurrence chances locally especially as 1-2 nodes were found +ve initially. And salvage surgery once recurrence happens can lead to slightly more surgery challenges due to +ve margin chances, longer temp ileos etc.

But my main worry is really a local relapse leading to a distant one if not caught on time.

Like you say CRGuy nothing is said with certainty that adds to the anxiety and mental
Caregiver to mom
54 y, dx 2/20, T3N1B Upper Rectal CA,14 cms from AV
2.5 x 1.3 cm, base 1.5cm
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20
CT and MRI show the tumour + Ground Glass Nodule Lung + Hemangioma Liver.
Grade 1 Tumor
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma.
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapOX 3x begin 9/5/20

Jogey
Posts: 10
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Mon Jun 29, 2020 3:29 pm

Hi Annie50,

I am sorry about the delay in replying to you about my saying that the risk of recurrence is significantly less after 2 years. I only come on here at distant intervals.
This actually referred to the risk of local regrowth of the tumour in the rectum, not distant metastasis. Please see this video where Dr Philip Paty of Memorial Sloane Kettering hospital in the USA clearly says that after 2 years of watch and wait about 80 to 90% of the risk of the tumour regrowing locally in the rectum is gone. https://www.youtube.com/watch?v=8WqV-kqSQ5E . The international watch and wait database research said that 88% of local regrowth in their study was in the first two years. However although the risk of regrowth is reduced, there is still some greatly reduced risk after the 2 years.

As regards distant metastasis, I do believe there is still a risk after 2 years and I (in London, England) will have regular annual CT scans to check for metastasis up to 5 years. I also have a CT scan at 10 years. The international watch and wait database report said that 75% of distant metastases happen in the first three years, so unfortunately clearly there is as significant risk of this happening after 2 years.
You can see the international watch and wait database research at https://pubmed.ncbi.nlm.nih.gov/29976470/

One complicating factor is that if a patient is unlucky and has local regrowth in the rectum after watch and wait then research at Memorial Sloan Kettering has reported that there is then a higher risk of distant metastasis. It is therefore likely that if you have reach the two years and have a lower risk of local regrowth, then the associated risk of distant metastasis is also reduced. I'm not sure if all this is clear.

I hope this helps,

Jogey

Jogey
Posts: 10
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Mon Jun 29, 2020 3:36 pm

Watch and wait update
Hi Everyone,

Just an update on how my watch and wait is going. I was diagnosed stage 3 rectal cancer with spread to 2 lymph nodes and T3a in November 2018 and finished radiotherapy at the end of January 2019. Incredibly fortunately I had a clinically complete response. I chose to have 3 months of chemotherapy last summer/autumn as my oncologist said new research showed that would increase my chances. Am screened every 4 months MRI, sigmoidoscopy, CEA. and annual CT scan. So far very pleased to say I am all clear. My bowel function is very good and I don't have any symptoms to report.
I take the care oncology clinic drugs and also low dose aspirin and vitamin d daily.
I have read research on lifestyle to prevent colorectal cancer recurrence and I avoid red meat and sugar, have lots of fruit and vegetables, whole grains, fish, especially oily fish. I also eat tree nuts and have four coffees a day.
I walk an hour most days and do resistance training once a week. Most of this is based on research from Dr Charles Fuchs at Yale.
I have had a few nasty scares along the way which I won't go into but so far I am very pleased to say the news has been good and I actually feel really well.
Watch and wait is quite tough mentally, in that you are constantly having all these scans and oscopies and you never know what they are going to tell you. I especially hate the sigmoidoscopy as you get the results straight away and you could tell if something is wrong but you are lying there on the table with a camera up you. Obviously CT scans are also particularly frightening as they are looking for metastasis.
Having said all that I feel incredibly lucky to have so far avoided surgery and have full bowel functionality and no pain. I just really hope my luck continues to hold.
Can I also wish you all the very best results for your treatments whatever the details of it. And for any other watch and waiters out there I hope it is very successful for you.

Take care. Jogey

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Jun 30, 2020 12:44 pm

Hi Jogey - your timeline and situation is so similar to mine. I got diagnosed in Nov 2018 too. Went through an identical treatment procedure as you did and also doing all the tests and scops every 4 months. Great news on the all clear so far and hope it continues to stay that way for you. :D

I'm curious about the oncology clinic drugs that you mentioned you are still taking? What are they ? And why are you taking a low dose aspirin? I am taking a vitamin D daily though but that's about it. So I'm curious what sort of other drugs you have been recommended post chemo.

Can you also share a little more about the research from Dr Charles Fuchs at Yale related to nutrition? Thanks ! :)


Jogey wrote:Watch and wait update
Hi Everyone,

Just an update on how my watch and wait is going. I was diagnosed stage 3 rectal cancer with spread to 2 lymph nodes and T3a in November 2018 and finished radiotherapy at the end of January 2019. Incredibly fortunately I had a clinically complete response. I chose to have 3 months of chemotherapy last summer/autumn as my oncologist said new research showed that would increase my chances. Am screened every 4 months MRI, sigmoidoscopy, CEA. and annual CT scan. So far very pleased to say I am all clear. My bowel function is very good and I don't have any symptoms to report.
I take the care oncology clinic drugs and also low dose aspirin and vitamin d daily.
I have read research on lifestyle to prevent colorectal cancer recurrence and I avoid red meat and sugar, have lots of fruit and vegetables, whole grains, fish, especially oily fish. I also eat tree nuts and have four coffees a day.
I walk an hour most days and do resistance training once a week. Most of this is based on research from Dr Charles Fuchs at Yale.
I have had a few nasty scares along the way which I won't go into but so far I am very pleased to say the news has been good and I actually feel really well.
Watch and wait is quite tough mentally, in that you are constantly having all these scans and oscopies and you never know what they are going to tell you. I especially hate the sigmoidoscopy as you get the results straight away and you could tell if something is wrong but you are lying there on the table with a camera up you. Obviously CT scans are also particularly frightening as they are looking for metastasis.
Having said all that I feel incredibly lucky to have so far avoided surgery and have full bowel functionality and no pain. I just really hope my luck continues to hold.
Can I also wish you all the very best results for your treatments whatever the details of it. And for any other watch and waiters out there I hope it is very successful for you.

Take care. Jogey
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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

prayingforccr
Posts: 20
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Tue Jun 30, 2020 7:02 pm

I was diagnosed with stage locally advanced 3 rectal cancer in november of last year and was lucky enough to be accepted into a clinical trial and treated at memorial sloan kettering where I underwent chemoradiation therapy involving 5 weeks of capecitabine, a radiation enhancing trial drug designed to keep cancer cells from repairing themselves, and 53 grey of radiation.

After 6 weeks, I had an mri. The doctors were all excited at the prospect of a complete response based on the mri, but upon a sigmoidoscopy and DRE, despite a robust response, there was still persistent disease, unfortunately.

After another month, I have begun folfox chemotherapy, the goal of which is to shrink/destroy what is left of the tumor.

This is known as consolidation chemotherapy.

So, the batting order is different.

CRT then folfox

My doctors and I are in full agreement that we will have done EVERYTHING possible to avoid radical surgery.

I am PRAYING for a complete response as I have decided after much reflection that I would rather end my life than undergo a surgery that would leave me with a bag.

Has anyone had a complete response after only a partial response from CRT, and THEN undergoing folfox?

I know it’s unorthodox, but I am trying to set expectations.

Thank you for reading and any responses
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

roadrunner
Posts: 46
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Tue Jun 30, 2020 11:42 pm

You and I are in a somewhat similar situation. I started with TNT, did 4 treatments of FOLFOX (one without Oxaliplatin), I had tons of bad side effects but achieved 70-80% reduction of the tumor. So jumped to CRT, 60Gy w/Capecitabine. Did extra cycles of Xeloda before and after RT. Was offered the other 4 FOLFOX treatments (of TNT’s 8 treatments) in the “interval” after CRT, was about to start, but deferred due to the pandemic. So went to MRI, which showed “near cCR,” then flex sig, which showed the same. There’s very little of anything left, but it’s not the smooth white scar W&W requires. Subsequent biopsy was negative, but my surgeon judges that there likely is some cancer still present (and that’s the best evidence). So now I am just about to finish off the FOLFOX as a last ditch effort at local control/way to get the full chemo in before surgery.

I’ve got a great team and have researched this a great deal. Here’s my understanding: cCRs and pCRs increase for up to 22 weeks after CRT. “Interval” chemo appears to increase the odds of pCR, but the effect is modest. A lot seems to depend on whether you were a “good responder” to CRT. If yes, delay is safer and more likely to work. Chemo during the interval would I think reduce risk of spread and may help a bit if you’ve got very little cancer left. But local control is mostly about radiation therapy and surgery. You said your response to CRT was “robust,” but not how much disease remained, which I think is important — if you’re really close to a cCR and short of 22 weeks out, you may achieve a cCR with or without chemo. Just my perspective, but while I will likely do the chemo with the *hope* that it will get me from a “near cCR” to a cCR, I understand that I’m likely just going to get the benefit of getting the recommended cycles in before surgery, thus avoiding systemic undertreatment for the most part. You may also want to discuss trans-anal excision with your surgeon. Or at least perioperative biopsy if you get to a resection. Those may provide alternatives to radical resection in some cases. Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.


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