Experiences with T1 - please share with me

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kmalbany
Posts: 6
Joined: Sat Sep 09, 2017 7:34 pm

Experiences with T1 - please share with me

Postby kmalbany » Wed Oct 11, 2017 1:43 pm

Hi all,

I had a T1 tumor removed recently through an endoscopic procedure.
It was a sessile tumor, well-differentiated, no lymphovascular invasion, no tumor budding, but likely grew deeper than 1mm. They could not grade it for depth based on the SM1, 2, 3 system because of how it was removed (you can imagine my eyes are glazed over from reading studies).

Of the doctors that I have consulted, the one I liked best was at Mayo, and he gave me the option of going the surveillance route. He thinks my risk of metastasis is probably around 5%. He also says surgery is an option and that it's up to me - that either option makes sense in my case and that of course, neither are free of risk.

I am 75% leaning toward surgery at this point and am wondering if anyone would be willing to share experiences that would help push me one way or another. My doctor's reasoning toward surveillance is that surgery is a risk, and that some recent studies are starting to show that T1s are being over treated with surgery.

I'm particularly curious with people's experience post-surgery for T1 long-term. I realize this is an individual experience. My tumor was at the very base of the sigmoid colon but the surgeon who would perform surgery (my insurance won't cover Mayo and I can't afford surgery there) - said she planned to take out the sigmoid and descending colon.

I'm also interested in if anyone on this board past or presence went the surveillance route for T1 (I imagine this is quite controversial and most would advise against it).

I'm really feeling traumatized by this decision and what is ahead of me in general. I haven't had any luck in finding a therapist who can help me with the emotional part, so far.

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: Experiences with T1 - please share with me

Postby Andrea1976 » Wed Oct 11, 2017 5:03 pm

Hi,
Sorry you are here. Yes, I had t1 in pedunculated polyp. That's the type that looks like a mushroom. The polyp was huge 5 cm. 3 cm head and 2 cm stalk. Highgrade dysplacia in the head. Stalk was completely free of any dysplacia. No vascular invasion. I had 3 different pathology reports done and it didn't include tumor budding or specific dept of invasion other than "superficial invasion" limited to the head of the polyp size 0.6 cm. I have seen 4 colorectal surgeons. Including a surgical oncologist at a GI dep of cancer center. He took my case to the board and they said surgery not indicated. 2 other surgeons from Baylor said I could have the surgery but estimate 3-5% chance of lymphnodes involvement. Last surgeon of a different hospital said no to surgery. It was very hard but I ended up trusting the cancer center. Currently the only surveillance I have is colonoscopy. I had one 6 months and will have another next week - at almost 2 months. I have transferred all my doc app to cancer center. And was also diagnosed with stage 0 Melanoma. At that point I was going to the same dermatologist for 5 years and she never questioned my mole. So now I am also being monitored for Melanoma. How old are you?
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

kmalbany
Posts: 6
Joined: Sat Sep 09, 2017 7:34 pm

Re: Experiences with T1 - please share with me

Postby kmalbany » Wed Oct 11, 2017 7:05 pm

I'm 44. Yours does sound more superficial than mine, so that makes sense.

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Experiences with T1 - please share with me

Postby mozart13 » Thu Oct 12, 2017 3:28 pm

Kmalbany, what are the options, if no surgery, will they give you chemo to wipe out any microcells if any, also is radiation option?
No situation is easy one, did they obtain clear edges when they removed polyp, that is the most important question in my opinion.
If surgery, will they give you chemo after?

Good luck to you!
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

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: Experiences with T1 - please share with me

Postby Andrea1976 » Thu Oct 12, 2017 6:44 pm

Mozart,
For t1 colon or any colon cancer I think radiation is never used. Also chemo is not used for t1 colon. The only other option is to have surgery and check the lymph nodes.
If clear lymph nodes statistics show that possible spread from t1 cancer is like 2 / 3% so that's why chemo is not used. Rectal cancer I think local reocurence is like 10% tats why radiation...
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Experiences with T1 - please share with me

Postby mozart13 » Fri Oct 13, 2017 8:00 am

Andrea, you are right, rad/chemo is not common in colon cases, for T1 is probablly overkilling, but some times both therapies are used for more difficult cases:
https://www.cancer.org/cancer/colon-rec ... erapy.html

There was one study, I lost the link, where 75% of all cancer cases come back within 2 years if not treated by chemo.
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

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: Experiences with T1 - please share with me

Postby Andrea1976 » Fri Oct 13, 2017 8:38 am

Looks like you didn't have a surgery correct but your tumor wasn't removed completely during colonoscopy. And you had radiation and chemo to treat tumor and possible spread. That makes total sense to me. In our polyp cancer type of situation it's different and unclear. Our polyps with little element of cancer were completely removed. In my case 2 cm clear margin. Than the question is should or shouldn't had the lymphnodes check with surgery. Similar situation is for people with stage 1 Melanoma. Surgery is not recommended but about 10% will end up with return of the cancer. Luckily I had stage 0 Melanoma so it wasn't invasive yet. Cancer once it's become invasive and that is any cancer can spread. We can follow statistics and hope for the best. But it's never 100%.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Experiences with T1 - please share with me

Postby mozart13 » Fri Oct 13, 2017 10:28 am

My cancer/polyp was never touched surgically, except for initial biopsy.
Completlly gone after chemo/rad, burned by radiation. I did ask them to remove it during colonoscopies, but they wouldnt touch it,had few surgeons to look into it. Plan was to downstage it , than remove it.
My radiologist thought that they are over killing it with radiation.
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

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: Experiences with T1 - please share with me

Postby Buckeye » Fri Oct 13, 2017 7:34 pm

Hi, you can look at my line below. I had a 1.5cm lesion that was graded a T1 in my rectum. I went to see a colorectal surgeon. Here is what he told me.,

You have two options. One scoop out the tumor as it was just entering the mucosa. He said if you go that route we have no idea if you have lymph node involvement. If I did he said the cancer could come back anywhere and I could be dead in two years.

Option two. Have laparoscopic tme with a temporary ileostomy and a 95% chance of a cure. I was only 47 at time of diagnosis. I am currently 2 years cancer free. I did however get diagnosed with Lynch Syndrome and have to be monitored closely. I chose option 2.

I can tell you I am very happy with my decision. I do go to the bathroom more often, but I don’t have much of a rectum left . About an inch. I live my life and do and go were I want. I drive for ups for a living . On the road for 8 hours a day and have never had an accident. I am not much of a gambler and I have a beautiful wife and two lovely daughters. They need me and I was going to give myself every opportunity to be in their lives. It’s your decision, your life, you only get one chance to make the right decision. I didn’t want to look back 6 months, a year later and think what did I do, I screwed up. You have to live with the decision not your doctors. Get a good colorectal surgeon and you will be fine. If there are any specific questions I will try and answer the best I can. Good luck to you and god bless.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

Utwo
Posts: 145
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Experiences with T1 - please share with me

Postby Utwo » Fri Oct 13, 2017 9:40 pm

kmalbany wrote:I had a T1 tumor removed recently through an endoscopic procedure.
It was a sessile tumor, well-differentiated, no lymphovascular invasion, no tumor budding, but likely grew deeper than 1mm. They could not grade it for depth based on the SM1, 2, 3 system because of how it was removed (you can imagine my eyes are glazed over from reading studies).
kmalbany,
What are your "margins" according to the pathology report?
Where was this tumor located?
Could you please update your signature with this information.

This would help us to provide a more specific advise.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

ozziej
Posts: 216
Joined: Thu May 21, 2015 8:35 pm

Re: Experiences with T1 - please share with me

Postby ozziej » Sat Oct 14, 2017 7:46 am

I had a supposedly benign sessile low rectal polyp removed by EMR. Turned out it was malignant, moderately differentiated but with no lymphovascular involvement, T1/2. Margins were clear. I was immediately referred to a colorectal surgeon. He gave me two options: ULAR or APR (would only know once he was in there), or watch and wait (no chemo or radiation). He emphasized that not harvesting lymph nodes meant there was a possibilty of microscopic invasion that couldn't be identified by scanning. He said that if it did return that the success rate of salvage surgery was about 50%. He asked me if i was a gambler. I wasn't, so i chose the surgery. Ended up with a ULAR so no permanent colostomy but I had a temporary ileostomy for about 12 weeks. O/25 lymph nodes positive. The ileostomy was relatively easy to manage. I had this reversed about 2.5 years ago. No sigmoid colon or rectum, straight coloanal anastomosis. Life since reversal has been a rollercoaster. LAR/ULAR carries a real risk of ending up with LARS (Low Anterior Resection Syndrome), which I now have. LARS of varying degrees is an outcome for about 80% of people with low rectal cancer who have an LAR/ULAR. The lower the anastomosis the more likely you will have LARS. Given that your polyp was in the sigmoid colon your odds of having normal function after surgery are better, though not 100%. Since my surgery i have done my own extensive research on low rectal cancer. Seems to me that most research is definitely being directed towards watch and wait, with chemo used for T1/2 where the plan is not to do a resection. There are also alternate full thickness procedures that fall short of resection but have good oncological outcomes without the risk of poor functional outcomes. There is very little research into improving treatment for LARS. Many people with LARS report that once the reversal is performed they receive little support from the colorectal world and are perhaps better served by gastroenterology.
This is an agonizing decision which only you can make. My heart goes out to you as i remember how difficult it was for me to choose. It is hard to find psychological support when many professionals are still operating under the belief that all colorectal surgery results in a permanent stoma. There is now a predictive tool available online called POLARS. It enables you to get an estimate of the likelihood of your surgery resulting in LARS. This may help in your decision making. I wish you all the best whichever option you choose.
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!! : )

User avatar
susie0915
Posts: 541
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Experiences with T1 - please share with me

Postby susie0915 » Sat Oct 14, 2017 8:36 am

ozziej wrote:I had a supposedly benign sessile low rectal polyp removed by EMR. Turned out it was malignant, moderately differentiated but with no lymphovascular involvement, T1/2. Margins were clear. I was immediately referred to a colorectal surgeon. He gave me two options: ULAR or APR (would only know once he was in there), or watch and wait (no chemo or radiation). He emphasized that not harvesting lymph nodes meant there was a possibilty of microscopic invasion that couldn't be identified by scanning. He said that if it did return that the success rate of salvage surgery was about 50%. He asked me if i was a gambler. I wasn't, so i chose the surgery. Ended up with a ULAR so no permanent colostomy but I had a temporary ileostomy for about 12 weeks. O/25 lymph nodes positive. The ileostomy was relatively easy to manage. I had this reversed about 2.5 years ago. No sigmoid colon or rectum, straight coloanal anastomosis. Life since reversal has been a rollercoaster. LAR/ULAR carries a real risk of ending up with LARS (Low Anterior Resection Syndrome), which I now have. LARS of varying degrees is an outcome for about 80% of people with low rectal cancer who have an LAR/ULAR. The lower the anastomosis the more likely you will have LARS. Given that your polyp was in the sigmoid colon your odds of having normal function after surgery are better, though not 100%. Since my surgery i have done my own extensive research on low rectal cancer. Seems to me that most research is definitely being directed towards watch and wait, with chemo used for T1/2 where the plan is not to do a resection. There are also alternate full thickness procedures that fall short of resection but have good oncological outcomes without the risk of poor functional outcomes. There is very little research into improving treatment for LARS. Many people with LARS report that once the reversal is performed they receive little support from the colorectal world and are perhaps better served by gastroenterology.
This is an agonizing decision which only you can make. My heart goes out to you as i remember how difficult it was for me to choose. It is hard to find psychological support when many professionals are still operating under the belief that all colorectal surgery results in a permanent stoma. There is now a predictive tool available online called POLARS. It enables you to get an estimate of the likelihood of your surgery resulting in LARS. This may help in your decision making. I wish you all the best whichever option you choose.


I was stage 2 so I was not given many options. It was chemo/rad, surgery with temp ileo, chemo, then reversal. Well after the chemo/rad sigmoidoscopy showed only scar tissue remained. Surgeon said still do surgery as that the only way to know if lymph nodes are involved for sure, but may not need chemo after if no cancer cells remained. There were minimal residual cancer cells remaining so had to do chemo. That was disappointing. I did have a bowel blockage 4 weeks after my resection and spent 3 1/2 weeks in the hospital ending up with surgery to remove scar tissue and early ileo reversal since he was going in anyway. I was happy about the reversal but did make it more difficult during chemo as I had diarrhea issues. I dealt with LARS syndrome for awhile and finally went to University of Michigan bowel control clinic about 15 months after reversal and 8 months after finishing chemo. After physical therapy, working with a dietician, and a couple tests, the Dr. there suggested using enemas, suppositories, or daily miralax to try and get total evacuation once or twice a day rather than many small bowel movements. I chose to do daily enemas as I have complete control, takes about 30 minutes a day, and I am free the whole day.
I'm not sure if I would've been a candidate for watch and wait after chemo/rad. Since the sigmoid only showed scar tissue, and pet scan showed no cancer, I think if offered I may have done it. But now knowing there were still some cancer cells remaining I'm glad I had the surgery. Also, I agree there does not seem to be a lot of help regarding LARS. My gastro basically told me take citrucel, limit immodium and be patient. The bowel control clinic really helped me, but I had to research myself to find it as my cancer was not treated as U of M. Their solutions were very helpful, and when I told my surgeon I was incorporating the daily tap water enema and feel so much better he was okay with it. It did help me gain some weight back, not stress, just lead a normal life. So besides the fact I have to do it, it has been quite positive. It is difficult to make decisions and measuring possible outcomes. When I was told I should do chemo after surgery, my oncologist said even though my risk of recurrence was low, she didn't what me to wonder "what if" if there was a recurrence. So I went ahead. Good Luck.
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, 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
11/17 CEA<.5

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: Experiences with T1 - please share with me

Postby Andrea1976 » Sat Oct 14, 2017 2:30 pm

With t1 polyps the doc are trying to estimate risk of lymph nodes involvement based on location, type of polyp, negative features etc... I have a almost 2 year colonoscopy coming up on Friday. The same day in the evening I am heading to watch my kiddo play at a varsity game and than to a Halloween party... as they say: we have to live every day...
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

kmalbany
Posts: 6
Joined: Sat Sep 09, 2017 7:34 pm

Re: Experiences with T1 - please share with me

Postby kmalbany » Mon Oct 30, 2017 12:49 pm

Thanks for the responses all. I have a great/talented surgeon at a top notch medical facility, and have surgery scheduled, but I don't feel at peace, I guess. It was the surgeon who suggested I could go with surveillance. If he hadn't, it wouldn't be buzzing in my brain.

This was my pathology report:

Size of invasive carcinoma: 0.9 cm greatest dimension.
Histologic grade: Low-grade (well-differentiated to moderately
differentiated)
Microscopic tumor extension: Deepest invasion involves the submucosa
(measured 3 mm beneath the disrupted muscularis mucosa)
Margins: Negative
Deep margin or stalk margin: Uninvolved by invasive carcinoma, distance
from margin is 0.5 mm
Mucosal margin: Uninvolved by invasive carcinoma, uninvolved by
dysplasia.
Lymphovascular invasion: Not identified

Polyp characteristics in which invasive carcinoma arose:
Type of polyp: Tubular adenoma
Polyp size: 2 cm greatest diameter
Polyp configuration: Sessile

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: Experiences with T1 - please share with me

Postby Andrea1976 » Tue Oct 31, 2017 8:55 am

That's very detailed pathology. My wasn't as detailed. Only included size of the malignant part: 0.6 cm. But not how deep in went. But all 3 of my reports do show head invasion only. Stalk was clear of any dysplacia so just s regular polyp stalk. Did your surgeon estimated your risk of lymph nodes? Also did he tell you if you have sm1, sm2 or sm3 invasion?
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!


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