T3N0M0 Rectal Cancer- refuse surgery?

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skb
Posts: 23
Joined: Tue Mar 28, 2017 2:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby skb » Tue Aug 15, 2017 4:21 pm

I have not posted in this forum in a while but I thought it was important to share some updates so that it could be useful for other patients.

My chemoradiation therapy ended on May 22nd 2017. Since June 2017, I have been having normal bowel movements. I had several imaging studies as well as a pathology study done to evaluate the tumor response.

June 26: Blood tests for genetic propensity for colorectal cancer retruns negative results for all 18 genes in the panel. This was initiated by my cancer team at Minnesota Oncology. The blood sample was sent to a lab in California.

June 28, 2017 (5 weeks after completion of chemoradiation): MRI Scan:
Approximately 10% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of 2. No suspicious lymphadenopathy.

June 30, 2017: Flexible Sigmoidoscopy with biopsy:
A nodule/bump was all that remained in the place where the tumor used to be. A biopsy of deep tissue from where the tumor used to be revealed no evidence of adenocarcinoma.

August 7, 2017: (10 weeks after completion of chemoradiation): MRI Scan:
Approximately less than 5% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of mrTRG-2.

August 9, 2017: (10 weeks after completion of chemoradiation): MRI Scan and PET scans as part of a study at Mayo clinic:
MRI report: No evidence of primary tumor. No evidence of distal metastasis

August 11, 2017: Oncologist at University of Minnesota Masonic Cancer Center calls the above reports an excellent response and places me in Wait and Watch Program if I am interested. I choose the Wait and Watch program after understanding risks and after signing up for an intensive follow up program.
August 17, 2017: Mop-up Chemotherapy to start. IV infusion of Folfox with Oxaliplatin. Every two weeks for approximately 5 months.

USEFUL INFORMATION FOR OTHER PATIENTS
========================================
1) Wait Period between completion of neoadjuvant therapy and surgery or evaluation for surgery:
Just by looking at my case, it appears that the chances of a complete tumor erasure are better if we wait longer after the completion of neoadjuvant chemoradiation. Some physicians recommend a waiting period of 4 weeks, some 5 weeks, the landmark Habr-Gama trial kept a waiting period of 8 weeks and some places wait about 10 weeks or more. There are studies going on regarding this. At least in one research paper, I read that the chances of tumor responding to neoadjuvant chemoradiation diminish after 10 to 12 weeks of completion of neoadjuvant chemoradiation. I was evaluated at 5 weeks and also at about 10 to 11 weeks.

2) University of Minnesota Masonic Cancer Center offers Wait and Watch Program for select patients with excellent response to neoadjuvant chemoradiation. There is not much information available online as to which Cancer Centers in the US offer this treatment. It is rare because it is not yet Standard of Care in the United States. It is probably the standard of care for complete responders in the hospital in Sao Paulo, Brazil where this method was pioneered. It is also offered as a choice to patients in the UK who are complete responders (read an online NHS pamphlet about it). In UK, it is called active surveillance. The patient is offered the choice, to either go for radical surgery or be on active surveillance. As far as I know, these are the centers in North America offering Wait and Watch program for patients with "complete response" (no consensus exists on what it is or how to measure complete clinical or pathological response)

- Memorial Sloan Kettering in NY
- Kaiser facility in Sunset Blvd. (CA)- this is where the user prs is having his treatment
- Some hospital in Toronto, Canada- )- this is where the user mozart13 is having his treatment
- Masonic Cancer Center, University of Minnesota, Minneapolis, MN- - this is where the user sreekanth is having his treatment
- University of Rochester Medical Center in Rochester, NY

Memorial Sloan and the Rochester, NY hospital are the only ones in the US that are part of the International Wait and Watch Database

3) It is important to note that Wait and Watch is a risky approach and every patient who is offered this program has to decide what is best for them. I am not advocating one way or the other. Considering my situation, my genetic test results, I decided to take the risk. Rigorous follow up is key. It is important to detect reccurrences early so that there could be emergency salvage surgery. I am just sharing information here for the benefit of other patients


4) Being active, eating healthy seems to improve chances of response to treatment:
While I was waiting after my neoadjuvant chemoradiation, I asked lucky folks like prs and mozart13 whether they ate a special diet or had special exercise regimen that helped them get to complete response. prs used to walk regularly. My oncologist also recommends that. I can't say that I walked every day in the last 3 months for 30 mins. But I tried to lead a normal lifestyle. Went to work, picked up kids, cooked dinner every night for my family, played with my kids when I could make time. I was active. My wife prepared a cocktail juice of carrots, celery and ginger and she made me drink a mug of that daily. We do not know if that helped for sure but carrots and celery can't be bad for you.

I am curious as to how other complete responders like prs, mozart13 and Rikimaroo are doing. Please post if time permits. You are the ones who gave me hope.

Peace!
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

ozziej
Posts: 215
Joined: Thu May 21, 2015 8:35 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby ozziej » Wed Aug 16, 2017 2:19 am

Just wanted to say what pioneers I think you guys are. As a person who has experienced severe LARS, I have been researching new directions for RC. Seems to me that once the oncological safety of sphincter saving surgery was established the focus shifted to functional outcomes, which is where the wheels began to fall off. The direction in research now seems to be firmly focused on avoiding radical surgery rather than treating the late effects. So watch and wait after complete (or even almost complete) response is firmly on the radar. Too late for me, but such a ray of hope for future generations. I wish you continued NED as you continue to push the boundaries.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Sam_I_Am
Posts: 2
Joined: Mon Oct 02, 2017 1:24 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Sam_I_Am » Mon Oct 02, 2017 1:37 pm

I am in the same group of wait and see. I was diagnosed with a 5cm tumor, 1 cm from verge. Stage 3 was the estimate from the doctors but 1 felt maybe stage 2. I went through the initial radiation and chemo for 5 1/2 weeks (extra 1/2 week was my request based on Sloan Kettering Study). I waited 1 month for MRI, at which point I was told that a 1.2cm tumor remained. Another 3 weeks passed before I had my surgeon due physical examine. At that point I was told the mass had shrunk more but it was still there. Since I was still reluctant for a bag, surgeon recommended a biopsy of area and to allow her to examine it closer. I allowed 2 more weeks to pass before biopsy. The results of the biopsy was that there was no tumor found, only scar tissue.

My surgeon is of the position that I am not at any greater risk by opting to take the wait and see approach versus the surgery and she would give the same advise to her brother. I begin my 6-months, every other other week treatment of Folfox and Flurouracil. Now my concern is for the possibility of permanent Neuropathy from the Oxaliplatin component of Folfox.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Maia » Tue Oct 03, 2017 8:38 am

Sam_I_Am wrote: Now my concern is for the possibility of permanent Neuropathy from the Oxaliplatin component of Folfox.

You can ask to receive Folfiri instead of Folfox --it is your right, both are interchangeable regimens in terms of efficacy, different side effects profile. With Folfiri, you might have diarrhea, and maybe hair loss or thinning, but not permanent neuropathy.

Sam_I_Am
Posts: 2
Joined: Mon Oct 02, 2017 1:24 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Sam_I_Am » Wed Oct 04, 2017 1:20 pm

Thanks for the info. On my 1st day of insulin, they told me they are giving Oxaliplatin. It definitely produces cold sensitivity within 1st 24hrs. When I grabbed a cold glass jar, my fingertips felt like little pins were poking them. Same when I took a sip of a cold beverage. I will monitor if this goes away after 48 hrs otherwise my doctor indicated they may back off the dosage.

I was surprised however that the whole infusion process for the Oxaliplatin took 4 hrs. For my initial chemo treatment care with 5FU, I just had a home service nurse come in an hook me up to a pump that was removed 5 days later.

mozart13
Posts: 98
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Wed Oct 04, 2017 1:43 pm

Sam, thats great that you had complete clinical response.
I was on folfox, scheduled for 10 treatments, developed neuropathy after 3rd dose, my oncologist told me at that time that I had excellent response to chemo, dose reduced, neuropathy went away, started to creep back after 7th dose again, after 8th one, was permanent, last 2 rounds switched to xeloda pills, on my last round now.

My neuropathy is now grade3, annoying, but I am getting used to it, might take years to go away as per my oncologist. Also strugle was with platlets, neutrophils.
But overall I feel better since switched to xeloda.

Guy next to me received fofiri, just spent 5 days in hospital for diarhea.

Maia has valid point, there is not much diference in outcome.
Either way, there is price to pay, ask your oncologist for opinion.

Here is the link to interesting link:
http://news.cancerconnect.com/chemother ... al-cancer/

Good luck toyou!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Chemo/rad finished end of January 2017, focus was on lymph nodes
Tumor erased, CCR, negative mri, ct, scope, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

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susie0915
Posts: 441
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby susie0915 » Wed Oct 04, 2017 2:42 pm

mozart13 wrote:Sam, thats great that you had complete clinical response.
I was on folfox, scheduled for 10 treatments, developed neuropathy after 3rd dose, my oncologist told me at that time that I had excellent response to chemo, dose reduced, neuropathy went away, started to creep back after 7th dose again, after 8th one, was permanent, last 2 rounds switched to xeloda pills, on my last round now.

My neuropathy is now grade3, annoying, but I am getting used to it, might take years to go away as per my oncologist. Also strugle was with platlets, neutrophils.
But overall I feel better since switched to xeloda.

Guy next to me received fofiri, just spent 5 days in hospital for diarhea.

Maia has valid point, there is not much diference in outcome.
Either way, there is price to pay, ask your oncologist for opinion.

Here is the link to interesting link:
http://news.cancerconnect.com/chemother ... al-cancer/

Good luck toyou!

I'm still dealing with neuropathy, 18 months from treatment. It has gotten better. I don't drop things like I used to or lose my balance. It's more annoying. Tough to walk barefoot on hard floor, so wear shoes or slippers all the time. It has not prevented me from doing anything, but is annoying. Mine really didn't kick in until about a month after I finished chemo. I think I had oxi reduced once during treatments due to diarrhea and some weight loss, but xeloda was reduced a couple times. I only had six treatments. Idk, I hope it gets better. My oncologist says can take a long time or may never totally go away.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

AppleTree
Posts: 128
Joined: Fri Mar 18, 2016 8:16 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby AppleTree » Fri Oct 06, 2017 10:08 pm

I had a temp bag even though my tumor was very low. The surgeon had to cut into the sphincter muscle a tiny bit to get the required margins. He said if I really had no control I could always get a permanent bag down the road.

It took awhile to figure out right medicine and routine to keep everything in control. I do very well, most days. But, I still plan eating times very carefully! Always carry emergency supplies and extra medicine. Wear depends if I am going to be out all day...just in case! My DR told me that when I get older, I might experience leakage. If/when that happens, I probably will ask for the bag again! It was an adjustment going on Folfox. Needed to up my meds and get a shot every 2 weeks to control the diareah but I think we got it down now, for the time being.

When I did have the bag, the 1st day I was well enough for stoma training I cried. But I was also recovering from a big surgery and far from home! My nurse was very good. The first 2-3 products we tried did not work out so well for me. She got me different samples until we found the perfect one. After that, it was easy for me to manage. After my reversal surgery, going the bathroom was very painful for awhile. It all takes time.

Chemo/radiation shrunk my tumor a little over 50 percent. I know the DRs were hoping for more, but 50 percent shrinkage made for an easier surgery. Everyone is going to have different results. I did the surgery, but could not have follow up chemo because my liver was failing. 1 year later I had a lung met. Got rid of that with a VAT surgery and now doing Folfox.

Not sure if that helps you or not, but that is how it went for me.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

User avatar
susie0915
Posts: 441
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby susie0915 » Sat Oct 07, 2017 9:25 am

AppleTree wrote:I had a temp bag even though my tumor was very low. The surgeon had to cut into the sphincter muscle a tiny bit to get the required margins. He said if I really had no control I could always get a permanent bag down the road.

It took awhile to figure out right medicine and routine to keep everything in control. I do very well, most days. But, I still plan eating times very carefully! Always carry emergency supplies and extra medicine. Wear depends if I am going to be out all day...just in case! My DR told me that when I get older, I might experience leakage. If/when that happens, I probably will ask for the bag again! It was an adjustment going on Folfox. Needed to up my meds and get a shot every 2 weeks to control the diareah but I think we got it down now, for the time being.

When I did have the bag, the 1st day I was well enough for stoma training I cried. But I was also recovering from a big surgery and far from home! My nurse was very good. The first 2-3 products we tried did not work out so well for me. She got me different samples until we found the perfect one. After that, it was easy for me to manage. After my reversal surgery, going the bathroom was very painful for awhile. It all takes time.

Chemo/radiation shrunk my tumor a little over 50 percent. I know the DRs were hoping for more, but 50 percent shrinkage made for an easier surgery. Everyone is going to have different results. I did the surgery, but could not have follow up chemo because my liver was failing. 1 year later I had a lung met. Got rid of that with a VAT surgery and now doing Folfox.

Not sure if that helps you or not, but that is how it went for me.


I had problems with the ileo also. My stoma was always bleeding. 4 weeks after surgery I had a bowel blockage and was in the hospital for 3 1/2 weeks. I had to have another surgery to remove scar tissue, and my surgeon said he was going to reverse ileo since he was going in again. I was suppose to have until after chemo so for at least 8 months. I was happy about the reversal but made it tough with diarrhea during chemo. I also contracted c-diff in hospital right after reversal, so that was fun.
I waited over a year after reversal and 8 months after chemo to try and get total control of bms. Diarrhea was never an issue, but I did have clustering that could come on without notice. I tried immodium/lomotil, citrucel. I was always afraid to eat at certain time depending where I was as I may end up in the bathroom several times. I would have good days, but not enough.
I found the University of Michigan bowel control clinic (I was not treated for cancer here). I made an appointment, and the gastroenterologist decided to do tests.
He also asked if I ever tried enemas or suppositories when I didn't feel like I fully evacuated. I never thought of that and my gastro at the hospital that treated my cancer never suggested. He just wanted me to stop taking lomotil or immodium, as I did cause myself some constipation, and take citrucel. He said it just takes time.
I had to do a tap water enema for one of the tests the U of M Dr. ordered and I felt really good the whole day. I also did pelvic floor physical therapy and met with a dietician. I decided to try and do enemas and have been doing them daily ever since. There are many on this forum that use daily enemas. It has given me my life back. I have been able to eat anything, gain some weight back, avoid anti diarrheal meds and all other meds I was trying. My bottom feels better, and have been able to do things I avoided for fear of bathroom issues. It takes about 30 minutes a day. Both my gastro at University of Michigan and my surgeon have no problem with me doing this. You can do when you are having bad days only, but doing daily makes the whole process much easier. I don't know if you have every considered this, but it is an option.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT


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