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

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prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Wed Jul 29, 2020 7:21 am

God bless you and your husband and your miracle.

May I be as fortunate.
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

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 » Sun Aug 02, 2020 4:50 am

Hi all,

I am on a watch and wait program for rectal cancer after a radiologically complete response. My last scans, sigmoidoscopies etc were around 14 months since I finished radiotherapy and fortunately were clear and I have more coming up this month.

I noticed this very interesting research for anyone on a watch and wait program "Conditional Survival in Patients With Rectal Cancer and Complete Clinical Response Managed by Watch and Wait After Chemoradiation Recurrence Risk Over Time"

https://journals.lww.com/annalsofsurger ... al.38.aspx

The main conclusion is "Conditional survival suggests that patients have significantly lower risks (≤10%) of developing recurrences after 2 years of achieving cCR following nCRT."

I have only had a quick read of these so could be wrong but I think this includes the risk of distant metastasis. So all in all if someone can manage to not have a recurrence or metastasis for the first two years, then you have an over 90% chance of being disease free 3 years after that.

Don't rely on this summary as I have only had a very quick look at the research so could be wrong in my interpretation, please read the research for yourself.

It is 18 months since I finished radiotherapy. I am obviously hoping that I can make it to the 2 year clear mark which would be a very important milestone.

Best of luck to all on this forum

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Aug 02, 2020 6:06 pm

Did you not do chemotherapy?
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

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 » Sat Aug 08, 2020 2:37 pm

In England, it is not standard to have chemotherapy on watch and wait, but I asked my oncologist to look at the latest research and he said it would improve my survival chances if I did, so I had it. I had 3 months as he had seen research that this would be just as effective as 6 months. Take care.

skb
Posts: 50
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Mon Aug 10, 2020 2:41 pm

Hi,
I am a wait and watcher who avoided radical surgery when the disease was diagnosed in 2017. I was disease free for two years.

In 2019, a solitary metastatic nodule was discovered in my right lung and it was removed with a VATS wedge resection. There was no chemo afterwards.

It is now one year after my lung surgery and I am fortunately still cancer free. I have scans every few months.

Just wanted to update this forum
Last edited by skb on Mon Oct 05, 2020 8:45 am, edited 1 time in total.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19, 12/19, 4/20, 7/20- Clean CT, MRI, NED

User avatar
CRguy
Posts: 10235
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Tue Aug 11, 2020 12:05 am

skb wrote:Hi,
I am a wait and watcher who avoided radical surgery when the disease was diagnosed in 2017. I was disease free for two years.
In 2019, a solitary metastatic nodule was discovered in my right lung and it was removed with a VATS wedge resection. There was mp chemo afterwards.
It is now one year after my lung surgery and I am fortunately still cancer free. I have scans every few months.
Just wanted to update this forum

Thanks for your post here as I believe it highlights the most important part of WW
NOT the wait part ... THE WATCHING PART !!!!!!!!!!!!

I have screamed this from the rooftops since I was first diagnosed :
" You WILL miss more for not looking... than not knowing."

SOMEBODY has to be doing some kind of aggressive WATCHING on the WW program
SO very glad they found your met ( same sitrep as mine ) and you are now doing well.
Please keep us in the loop and make damn sure some Doc is still WATCHING for a while !!!

Cheers and best wishes
CRguy on the Journey
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

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Fri Aug 14, 2020 11:35 pm

skb wrote:Hi,
I am a wait and watcher who avoided radical surgery when the disease was diagnosed in 2017. I was disease free for two years.

In 2019, a solitary metastatic nodule was discovered in my right lung and it was removed with a VATS wedge resection. There was mp chemo afterwards.

It is now one year after my lung surgery and I am fortunately still cancer free. I have scans every few months.

Just wanted to update this forum


Thank you very much for the post.

I am PRAYING for a ccr post TNT, and will be extra vigilent thereafter if I am lucky enough to be “cured”
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

Hopepray
Posts: 17
Joined: Fri Feb 14, 2020 9:48 pm

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

Postby Hopepray » Sat Sep 05, 2020 6:41 am

Just thought I ll update the thread since I have had so many of you answer my naive questions. Thank you for that first.

After considering W&W and all the inputs from you wonderful folks, we spoke to a few surgeons and med oncs and decided to get the surgery done.

Surgery was done well into 13th week after completion of preOP CRT.

We went with getting surgery done considering the initial staging.

Pathology report came back negative for any tumor cells and staging was ypT0N0M0. However the pathologist could only retrieve 5 nodes all of them negative. This I read about a bit, and found some studies that say that especially in Rectal CA the number of nodes retrieved after a extensive pre OP CRT can significantly reduce nodes retrieved from the avg of 12. Short course CRT has more nodes generally than longer course of 28x. The surgical margins looked quite on point for me at least.

It's been now two months after surgery and with consultation of our oncologist we are getting on the adjuvant CapOX of 3 cycles and possibly Xeloda for few cycles after again based on the initial staging etc....
Worried a bit about Oxi's sides but it's just the first day today.

I hope and pray for all of you for a quick recovery!
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

FightCRC
Posts: 52
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Sun Sep 20, 2020 12:52 am

prayingforccr wrote:I will opt for any surgery that doesn’t leave me with an ostomy.


You need to look up LARS (low anterior resection syndrome). You are not alone, there are others who also believe a colostomy is the worst possible outcome, worse than death. I can tell you from studying countless patients who decided to forego surgery, who also couldn't bear the idea of a colostomy, that a colostomy is not the worst possible outcome from a rectal tumor. Far from it. Something they eventually came to realize, as well...but too late. I do hope you dig deeper on the subject. Stage III is still potentially curable.

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Sep 20, 2020 3:47 pm

I have completed 5 weeks of radiation combined with capecetabine and a clinical trial drug (m3814) and after a break of about 6 weeks, have completed 6 out of 8 FOLFOX sessions.

My CEA is 1.5 and the tumor has been at least 85% destroyed. Tge tumor bed/scar tissue was 2.7 cm at last mri down from 3.8 in may prior to folfox.

I have 2 more FOLFOX sessions to do, then it is up to ny for an analoscopy to determine if there is any persistent disease.

My doctors know I will not accept a colostomy under any curcumstances, so for me it is either a ccr or I will pursue alternative treatments to kill what remains.

My opinions have been formed after much introspection.

I know what I can handle, and what I cant handle, and am doing my best to do what I can to be healthy again.

FightCRC
Posts: 52
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Sun Sep 20, 2020 7:08 pm

I'm certainly not opposed to the idea of alternative treatments. Whatever has a chance of working, is worth trying. The problem is, there's nothing alternative that's shown ANY significant efficacy at all for late stage rectal cancer. Joe Tippens Protocol, Chris Beat Cancer, Gerson Therapy, Care Oncolocy Clinic, Jane McClelland's How To Starve Cancer, hyperbaric chamber, mistletoe...none of it. Have not come across a single rectal cancer patient who has been cured. I don't expect you to take my word for it, but your own research will yield the same results.

The good news is you're at the top center in the US for W&W. Who are your doctors at MSK? Two key lead researchers at MSK for W&W are Dr. Julio Garcia-Aguilar and Dr. Philip Paty. W&W protocols in the US are almost entirely derived from their research/data. If you haven't seen either one yet, I most especially recommend Dr. Paty. He's perhaps the top colorectal surgeon in the country, and one of his specialties is sphincter-sparing surgery. An excision may be an option. Do try your best to see him, he's an amazing doctor and will talk it all through with you. It may not have to be cCR or bust. He'll respect whatever you decide. Best of luck to you.
Last edited by FightCRC on Mon Sep 21, 2020 12:38 am, edited 1 time in total.

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Sep 20, 2020 9:20 pm

Thank you very much for the input.

I went through a clinical trial run by Dr Paul Romessar, and have dealt primarily with Dr Zinavoy for radiation, Dr Wei for oncology, and Dr Won for surgery.

If and when the time comes, I will def take your advice and reach out to Dr Paty.
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

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Fri Oct 02, 2020 6:15 pm

I wanted to give a quick update on the status of DH, mostly to give some hope to those out there who were diagnosed with stage 4 CRC.

Its been over a year of chemo and radiation treatment with a laparoscopic surgery halfway through. The radiation was intense and covered a much larger area than the colorectal surgeon was expecting.

Today he went in fully expecting to be recommended surgery. Two types of surgery were previously on the table. One would result in a permanent colostomy and the other was robotic assisted, and would preserve bowel function, but would most likely have at least some negative impact on quality of life.

This afternoon DH met the surgeon who performed an examination and determined that all that was visible is a small scab. He could not declare him as cured, but said that for practical purposes he is, and that there is no sign of cancer.

The doctor said that SOC for stage 4 patients calls for surgery following treatment, but in his case - which seemed pretty specific to him - W&W would be offered as an option. So he was given three options, that one along with those other 2.

DH asked him what he would recommend in his case, and he leaned toward W&W. The caveat is that if there is a recurrence, he would most likely require the permanent colostomy. The surgeon always seemed to favor the permanent colostomy due to the quality of life related issues that most likely would result with the other surgery.

Meanwhile they will observe his progress every 3 months for the time being. So watch and wait begins for him today.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

prs
Posts: 172
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 » Sun Oct 04, 2020 11:07 pm

@jsbsf, congratulations on your husband's complete clinical response. It looks like you've had quite a journey to get here, but to this point it all seems to have worked out extraordinarily well.

Welcome to the W&W club, and always remember the emphasis is on the "Watch" part! Those quarterly follow up visits are all important. IIRC my quarterly exams consisted of a flex sig plus an MRI specially designed to look at the rectum in great detail. Also annual colonoscopy and CT scan of chest, abdomen, and pelvis.
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

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Oct 05, 2020 11:54 am

prs wrote:@jsbsf, congratulations on your husband's complete clinical response. It looks like you've had quite a journey to get here, but to this point it all seems to have worked out extraordinarily well.

Welcome to the W&W club, and always remember the emphasis is on the "Watch" part! Those quarterly follow up visits are all important. IIRC my quarterly exams consisted of a flex sig plus an MRI specially designed to look at the rectum in great detail. Also annual colonoscopy and CT scan of chest, abdomen, and pelvis.


Hoping to join you in the W&W club soon, Peter.

I’ll know in early November.
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


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