T3N0M0 Rectal Cancer- refuse surgery?

Please feel free to read, share your thoughts, your stories and connect with others!
TheSquire
Posts: 6
Joined: Wed Apr 26, 2017 11:09 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby TheSquire » Thu Apr 27, 2017 7:58 pm

Thank you for your feedback. I am glad you agree. At the end of the break between treatments I am supposed to have an exam. I am not yet sure what that will entail. I also expect to have follow up exams after I am cured. I am working with doctors in Connecticut and have also seen Dr Paty at MSKCC. He is guiding the therapy but not on it day to day. I believe I will see him during my break. I trust him greatly. As a 53 year old guy with a busy life, I just couldn't accept the "bag", especially since my cancer was caught so early and I am basically "fine" otherwise.

I should have had the colonoscopy a year or two ago. If I had, this thing could have been removed with a local excision. The tumor is now T2 and it's just a bit too advanced for that. It's too low to have a recection without the risk of a permanent colostomy. So, here we are.
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17.

TheSquire
Posts: 6
Joined: Wed Apr 26, 2017 11:09 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby TheSquire » Thu Apr 27, 2017 8:19 pm

That's good advice, Dan. Thanks. I am presently putting off surgery and undergoing chemo radiation.
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17.

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby sreekanth » Fri Apr 28, 2017 10:08 am

Congratulations TheSquire on your bold approach. Just like you, I was diagnosed late March (colonoscopy on 3/21, biopsy results back the next day) and I started chemoradiation on 4/18. 1800mg Xeloda twice a day with 200Cgy of radiation- Monday through Friday

It is good that your tumor is a T2 and not T3 like mine. That might improve the chances of a full clinical response.

Peter (user id: prs) had a T3N1 while mozart13 had a T2, so I am hopeful that some T2, T3 folks would get complete clinical response.

My radiology folks said nothing about Vitamin C/ anti oxidants . I will ask them today when I go in for my daily dose.

----------------------

Dx 3/22/17- T3N0M0, Distal rectal tumor of size 4.5cm, 2.5 cm from anal verge
Chemo/radiation started 4/18/17- 1800mg Xeloda twice a day with 200Cgy of radiation- Monday through Friday
In line for permanent colostomy- trying to avoid (I am open to surgery, but just trying to avoid permanent colostomy)
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

User avatar
CaliforniaBagMan
Posts: 317
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby CaliforniaBagMan » Sun Apr 30, 2017 10:09 pm

The banter in this thread seems to be an effort to validate a hoped for process and outcome instead of objective weighing of alternatives including possible risks. Maybe I am not seeing that right?

The bottom line is that cancer is a potentially fatal diagnosis. Surgery is the gold standard which is most effective at achieving a cure. So alternatives should have a very sober and objective assessment of risks and consequences. Other routes are possible, of course, but whether two or a hundred people write here that watch and wait is good for them, the simple truth is that your system is different and unique. What other people write won't help your body to clinically respond, although their information can of course be helpful to increase knowledge. And, what about those folks who are now deceased and cannot write? What were their choices and outcomes?

While you watch and wait, depending on how long that continues, you might risk lymph node involvement or other spread. That's not a reason to decide one way or another, it's just another risk. I am not advocating any treatment plan. You are the patient, and so you choose. And I hope whatever you choose you have the best possible outcome!!!
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

sreekanth
Posts: 22
Joined: Tue Mar 28, 2017 2:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby sreekanth » Mon May 08, 2017 1:27 pm

I appreciate your direct and candid response.

Yes, I understand that surgery is the gold standard for colorectal cancer treatment and is the best way to reduce chances of recurrence and loss of life.

However, cancer treatment or any kind of medical treatment evolves over time. This thread is discussing some new treatment plans and research papers that are coming out of Brazil and the Netherlands that try to preserve the organ (rectum, colon) in patients who have had a complete clinical response by using a wait and watch program (frequent follow ups). In case a recurrence is noticed, a salvage surgery, a permanent colostomy is done. This treatment I hear, is offered at some centers in US, like the Kaiser facility in LA and also at Memorial Sloan Kettering at Houston.

I am not advocating treatment one way or the other. My preference is to leave it to my doctors who have spent years in training and seeing and treating many cases.

However I believe the patient community should keep their eyes and ears open for new technologies, treatments and openly share such information for the benefit of others. :D 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

User avatar
CaliforniaBagMan
Posts: 317
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby CaliforniaBagMan » Wed May 10, 2017 9:51 pm

I had my "year 10" checkup recently with my chemo oncologist. I asked him what had changed in the past 10 years regarding treatment. He said that sometimes they aren't as fast to do APR surgery compared to before. I asked him what the factors were that "sometimes" suggest waiting and "sometimes" does not. He said it is a blend of art and science and it's really a mutually agreed path in most cases, if the doctor recommends that, based on the patient and their experience. I asked him if I would have fit the criteria and he said probably not. Although I had the most difficult side effects I've ever read about, indicating the treatments strongly affected my physiology, my tumor did not completely respond to treatment.

I hope you have as good of an outcome as I have had, and even hopefully a better one!!
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

Rikimaroo
Posts: 24
Joined: Tue Dec 20, 2016 8:48 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Rikimaroo » Fri May 19, 2017 2:16 pm

Watch and Wait even though its a newer method, has still been around quite a few years and they do have data on it. Numerous articles have been coming out about not rushing to surgery when a patient has CCR.

Of course its still a difficult decision because the standard of care has always been, surgery is king. Watch and Wait is kind of debunking that thought and working for a lot of people. Like anything in cancer, there was a time when nothing could be done, everyday, month, year there is new things that can be done. So we should all be open to Watch and Wait, Surgery, Chemo Radiation, Immunotherapy and whatever else they are doing to help fight cancer.

If your a candidate for W&W based on cCR I would go that route and do anything and everything possible to help the doctors with achieving cancer free outcomes and non recurrence. We can't be just sheep listening to everything the doctors says, we have to also be our own advocate. Doctor's are not perfect and one can also question the reasoning behind certain monetary rewards for the institution/doctor's if they follow the standard of procedure, vs shifting away and doing something different like watch and wait.

I am not knocking on anyone who did surgery, I have a cCR and still having a hard time deciding what to do, because there are so many angles being thrown at you, from reading here at the forum and from doctors. It's really hard to make a decision. If I a biopsy comes back and there is cancer, I am doing surgery no questions, but if not, why go through a surgery when there are possibly other techniques that can be done and proven to be successful not given a chance?

Standard of procedure is open to change and like we all probably agree, there is possibly a cure for cancer, but its a multi billion dollar business. You have a cure, no more chemo, no more radiotherapy, no more surgeries, just a pill. No way pill is going to cost as much as all of that. Their is just so much thrown into this equation, it makes for a difficult decision making.

I hope everyone has a great outcome no matter there choice, but surgery is not the only option now, 2017 and more options are available.
38 y/o male, 3 kids 7,9,14
12/12/16 Colonoscopy, DX Tumor recto sigmoid 9CM from anal verge
12/16/16 Biopsy Results in Malignant, no staging
12/22/16 Pet Scan; 12/28/16 MRI; 12/29 T3N1M0 Stage III possibily
1/2017 Chemo Radiation Planned prior to surgery
1/26/2017 Chemo 3500 MG Xeloda/Radiation Begins
3/9/2017 Completed Chemoradiation, good response
5/1/2017 Met with surgeon to follow-up Surgery schedule 6/6/17

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Sams wife » Fri May 19, 2017 6:40 pm

I would have preferred TEM? TME? Anything, rather than colostomy, because I knew my husband would be upset about it. He just wanted it out without a 2nd opinion.

During pre surgery (talk) with dr & family, family asked something about the biopsy, after chemo/rad. To be able to watch & wait.
The only thing I could say was " if they miss where the cancer is, it will show no cancer". He went ahead with surgery. They only got 5 lymph nodes, I guess because radiation fried the rest. Not sure. But there were microscopic cancer cells left. I'm glad he did some kind of surgery. I would have wanted a few opinions. I guess he just wanted it gone! Good luck.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Rikimaroo
Posts: 24
Joined: Tue Dec 20, 2016 8:48 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Rikimaroo » Fri May 19, 2017 7:09 pm

Hi Sam's Wife - From your signature he did surgery, but did he have complete clinical response to the chemo radiation? Did the tumor disappear totally? Even though he did surgery and it seems there might be a possibly of spread based on your signature. I really hope its nothing. But its such a hard decision making process, because your damned if you do or don't sometimes. Did he change his diet? I quit eating red meat totally, am more active, don't sit as long and get up as much as possible. Drink a lot of water. Did he do all these things?
38 y/o male, 3 kids 7,9,14
12/12/16 Colonoscopy, DX Tumor recto sigmoid 9CM from anal verge
12/16/16 Biopsy Results in Malignant, no staging
12/22/16 Pet Scan; 12/28/16 MRI; 12/29 T3N1M0 Stage III possibily
1/2017 Chemo Radiation Planned prior to surgery
1/26/2017 Chemo 3500 MG Xeloda/Radiation Begins
3/9/2017 Completed Chemoradiation, good response
5/1/2017 Met with surgeon to follow-up Surgery schedule 6/6/17

rickker20
Posts: 115
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby rickker20 » Sat May 20, 2017 1:30 am

I have never met any one that has pass 5 years with the watch and wait method. Surgery is the only way to cut out the cancer from your body.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

Swirdfish
Posts: 257
Joined: Sun Jun 19, 2016 3:57 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Swirdfish » Sat May 20, 2017 5:32 am

So someone give me some insite here..

CT MRI and PET scans are how accurate?? They cannot detect microscopic cancel cells. Can they detect vascular, veins, or capillary invasion? A lymph node can still be affected by cancer but of standard size. There is a lot of other pathways cancer can spread besides lymph nodes.

Now scans do have there limitations and also if the scans show your Tumor is 100% dead from radiation and/or chemo how do you know that also it's killed the microscopic cells as well as affecting the other areas as above??

How can you know? Pathology after surgery.

I'm not trying to downgrade the watch and wait but I believe it's a big risk to take.. think of spread.

Surgery is done with margins.

Scans are still limited to technology.

By all means don't take the above as anything, I just trying to understand the whole watch and wait idea.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Joannerogers
Posts: 243
Joined: Tue Jun 16, 2015 4:50 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Joannerogers » Sat May 20, 2017 7:34 am

Just to reassure you...I had an ileostomy for a year. In many ways it was actually easier. I called it my personal porta potty. I had my reversal but if the cancer should come back, I know a bag is doable. I cried my heart out when I found out I would need an ileostomy because I didn't know any better and I was worried about what others would think. After I got use to it, it wasn't too bad. If I didn't mention to anyone that I had it they wouldn't notice it at all. Whatever you decide is ok. I just wanted you to know that ppp's (personal porta potties) aren't that bad.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Sams wife » Sat May 20, 2017 9:47 am

Rikimaroo wrote:Hi Sam's Wife - From your signature he did surgery, but did he have complete clinical response to the chemo radiation? Did the tumor disappear totally? Even though he did surgery and it seems there might be a possibly of spread based on your signature. I really hope its nothing. But its such a hard decision making process, because your damned if you do or don't sometimes. Did he change his diet? I quit eating red meat totally, am more active, don't sit as long and get up as much as possible. Drink a lot of water. Did he do all these things?


They never said complete clinical response. They said we still want surgery. They said we could biopsy & maybe wait but nobody recommended it. ONC even told us the last 4 or 5 people that tried, it ended up coming back on. I would have went for lesser surgery. Especially with lung spots.
But really, I think he would have had more of a problem with bathroom issues. Now I think it's good he went for it. He worked an hour away. Outside sometimes. Bathroom issues would not have worked.

No. He ate whatever would keep weight on him. Whatever he could eat at the time. The 2nd chemo wasn't to bad & steroids made him eat more. The first time he got down to 115 lbs because of thrush I think. And it could have been to much folic acid (cereal) with 5 FU. Drank cokes ate meat. I tried having lots of protein for healing & BRAT diet so we didn't get blockages. He doesn't eat popcorn anymore tho!

He's always been active (work), drank more water & Gatorades because he passed out in the shower from being dehydrated. Lowered BP. There is no way of knowing what will happen. 2 years (2 1/2) is up now. Went tues to dr. He told them he was coughing so went for a scan Friday. They wait for scans every 6 months now. I'm glad he got one a little early. Jan was his last one. I'm expecting something to be wrong. Even if it is a few years away. I guess I'm just that kinda person.

He has choked on food about that many times. Lung spots. So it very well could be that. One time after chemo he choked too. I'm just the kinda person that needs to be prepared IF something happens. Still smokes. ONC gets on him every time. Said cancer won't kill him, smoking will.

Even if they say complete response I would want a little surgery. I say that now but I am scared to death of surgery s. there is no way of knowing. You just have to do it for you & deal with whatever happens. You could have a big surgery & it come back anyways. Can't blame yourself for eating wrong or anything. It happens! Don't want to scare you either. Just wanted to let you know that there are people here that cells were found after surgery. I'm glad he did it now.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

mozart13
Posts: 72
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Sat May 20, 2017 12:14 pm

My surgeon told me there is no quarantee, surgery or no surgery, I have cCR, regardless of that, he said that I could still get distant mets, and local reccurance , even if I decided to get surgery. Laparoscopic rectal surgery is all he does, hardest part for me would be able to live with my dessiccion, he gave me option, and I took it, mistake or not, time will tell.

The difference between watch and wait in all those studies and now is, people didnt get chemo once cCR was established, things are changing today where most people now getting folfox to wipe out any microcell if any. Folfox is usually given post op as adjuvant therapy, my oncologist agreed to give it to me as neoadjuvant even though I alerady had chemo/rad.
When I ask her about W&W, she said every thing is risky in life, I kind of like her attitude.

There is oneshort study on just 3 rounds of folfox post chemo/rad, and cCR went from 25% to 50%, that gives much better chance of being curred those first 25%.
This is just my thinking, not meant to be advice in any way.

Wish well and good luck to all!
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 Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

Rikimaroo
Posts: 24
Joined: Tue Dec 20, 2016 8:48 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Rikimaroo » Sat May 20, 2017 11:09 pm

Interesting article supporting watch and wait:

http://www.cancernetwork.com/asco-2017- ... tal-cancer

It's such a hard decision to make, and only us folks with cancer know how hard it is. I hope everyone lives a long life :) <3

Rikimaroo
38 y/o male, 3 kids 7,9,14
12/12/16 Colonoscopy, DX Tumor recto sigmoid 9CM from anal verge
12/16/16 Biopsy Results in Malignant, no staging
12/22/16 Pet Scan; 12/28/16 MRI; 12/29 T3N1M0 Stage III possibily
1/2017 Chemo Radiation Planned prior to surgery
1/26/2017 Chemo 3500 MG Xeloda/Radiation Begins
3/9/2017 Completed Chemoradiation, good response
5/1/2017 Met with surgeon to follow-up Surgery schedule 6/6/17


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: angie1975, anitaw, Beckster and 22 guests