Big Decision

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Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:22 pm

You are correct!!! Completely!!! Thank you.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 9:32 pm

Histology
Carcinoma "in situ", intramucosal carcinoma, high displasia or intraepithelial carcinoma is the stage at which there is no involvement of the muscularis mucosa. In general, this tumour stage does not cause metastasis. It is classified as pTis or Stage 0 in the TNM staging system.These terms are defined as non-invasive high grade neoplasia in the Vienna classification [12].Carci‐ noma in situ or severe displasia or intraepithelial carcinoma corresponds to a carcinoma that is restricted to the epithelial layer without invasion into the lamina propria. Intramucosal car‐ cinoma is a carcinoma characterized by the invasion into the lamina propria.
When the carcinoma spreads to the submucosa, the polyp is considered to have become ma‐ lignant, being able to spread to lymph nodes or distant sites. The tumours that affect the submucosa are classified as T1 and correspond to Stage I of the TNM staging system. This term is defined as submucosal carcinoma in the classification of Vienna [12].

Nik Colon

Re: Big Decision

Postby Nik Colon » Wed Feb 24, 2016 10:43 pm

Andrea1976 wrote:Report from my 2nd pathology dep:
Cecum: tubular adenoma no cancer
Descending colon: polypectomy. Infiltrating mod diff adenocarcinoma arising in a tubulovious adenoma with extensive high grade dysplasia (adenocarcinoma in situ). Tumor extends into submucusa pt1 without evidence of lymphovascular or perineural invasion. Cauterized surgical margins negative for dysplasia and neoplasia.

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Big Decision

Postby Cowgirl918 » Wed Feb 24, 2016 11:11 pm

I have had the struggle you are having. If I had proceeded with surgery I would have had a right hemicolectomy for no good reason at this time. My EMR revealed a 4 cm flat/sessile polyp. They removed 80% and in August we go back for the rest and another biopsy. I am so happy to have been spared a reduced qol even if I am checked every 6 mos. I will deal with each process as it comes. In this country we refer to folks being "too quick to pull the trigger". Just be sure you aren't one of those. I agree with Bev and zx10.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:20 pm

Thank you both! If I only had "in situ" / than I would not have the surgery. Or if I was older... I called the surgeon who is post to do it on Monday. And want to talk to him one last time. I want the explanation why he thinks u should do it and also where is his statistics coming from. That's what my friend who is a nurse at cancer center recommened for him to tell me his recourses and if he can't back it up than there is a problem...

Cowgirl: great that you are feeling well!!! I think I can deal with the result of the surgery. My digective system was never good so not used to easy... That's why if I didn't start bleeding I would not be able to tell. I am probably not diagnosed with IBD etc. My daughter is ok but my son has the same issues like me since childhood. I just took him to GI pediatric doc. Might consider having my kids do colonoscopy at 15 years old just to be sure...
Last edited by Andrea1976 on Wed Feb 24, 2016 11:24 pm, edited 1 time in total.

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Wed Feb 24, 2016 11:21 pm

Andrea...again, your cancer cells did NOT spread to the submucosa of the COLON WALL. What you just quoted above refers to the COLON WALL submucosa .....not the same thing as the submucosa of the polyp itself. Please understand that they are different.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:25 pm

Maybe I am wrong - I will ask the surgeon about it.

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Wed Feb 24, 2016 11:26 pm

You want to ask a surgeon WHY he is willing to do the surgery....why not ask the other surgeon why he/she ISN'T willing to do it. Again, if you truly had a T1N0M0...stage I, I would have a very difficult time believing that he/she wouldn't do surgery. You have TWO surgeons who feel surgery is unnecessary. Ask the surgeon if there were any cancer cells in the colon wall.

Reality is, Andrea, no colon cancer patient is staged until AFTER surgery.....besides looking at nodes, the pathologist cannot tell how deeply the tumor has grown into the wall of the colon (requirement for staging) without a surgical pathology report. A doctor may give a patient an 'idea' of what stage he/she thinks the patient is but until that colon wall is thoroughly examined, it is impossible to give a "T" stage designation. Your colon wall wasn't removed during a colonoscopy.....just the polyp, with stalk, was removed. You can't possibly be told that there was cancer in the submucosa of the colon wall.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:38 pm

Ok, thank you. I will ask. My understanding is that Pedunculate polyp is in a special category. If it's invasive and goes to submucusa of the head than its T1 and level 1 on Haggitt. If it's stage 0 - in situ than its not considered invasive. Mine unfortunately is not stage 0. Once it's in the head than there is a minimum risk that it could spread. If it's a low risk polyp / Haggit level 1, well or mod diff, no lymphatic etc than most studies show 1% chance of spreading. If it's level 4 Haggit / cancer made it to the colon wall than its like up to 25% chance of lymph nodes involvment. So that's the struggle. The surgeon basically told me that its up to me what risk I am willing to take. Still the number 3-6% seems high. I would like to confirm from where he is getting his number.

My question is: if he takes out 20 lymph nodes and they are negative. What is the chance that the 21st would be positive? How does this work?

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:40 pm

Also want to add that all other polyps are considered level 4 at minimum.

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:43 pm

And that's the problem. Unless I have the surgery than I cant be properly stage. I am taking risk not to have the surgery. The question is what is bigger risk the surgery or watch and wait approach...

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: Big Decision

Postby Andrea1976 » Wed Feb 24, 2016 11:49 pm

This person online is having my problem:
http://www.medhelp.org/posts/Cancer/mal ... ow/1855163

Nik Colon

Re: Big Decision

Postby Nik Colon » Thu Feb 25, 2016 12:11 am

Ok, let me ask you a question. How should any of us higher stages live or react? We KNOW it already spread and can be anywhere, should we just give up? Should we do chemo forever even if we are currently NED? Should we ask to remove as much of our insides as possible? Where does it end?

I only had the minimum 12 lymph nodes removed, only one was positive which was the one seen on my PET.

As far as the above post from me, I was quoting from your post about your report that said "in-situ". Why does that one say in-situ but another not? That would be one of my questions.
Last edited by Nik Colon on Thu Feb 25, 2016 1:27 am, edited 1 time in total.

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Big Decision

Postby weisssoccermom » Thu Feb 25, 2016 12:23 am

Andrea...you said it yourself. You CAN'T be staged until surgery. There is NO indication that the cancerous cells in the tip/head of the polyp have spread to the colon wall. So, HOW can you claim that you are stage I? You are confusing this haggit 1 with stage I and/or T1. Again, they are NOT the same.

Where do you get this from?

Also want to add that all other polyps are considered level 4 at minimum.


Andrea....STOP. Again, you can't be staged until surgery and there is NO WAY that you could have been told that you have a T1 'tumor' because the colon wall hasn't been examined. The person online that you referenced in the link only had a 1.5mm clean margin.....same as .15 cm.....and you said that your stalk...all of which was clean was 2.0 cm. Now, look at the difference in clean margins between .15cm (not a good enough margin) and 2 cm (considered normal).

You can spend all day/night trying to justify this or that...what should you do/not do....but it truly does seem as though you want to have surgery. Then HAVE the surgery. To answer your question...there is no 100% guarantee that if they take 20 nodes out that there is still one left in that might be cancerous. That's the thing with cancer. There are no guarantees.

Sorry if this sounds blunt, but you are overfocused (if that is such a word) on cancer. You've got a doctor whom you claim has something like 40 years of experience yet you don't trust him when he tells you you don't need surgery. BTW - you are totally wrong that the only way a cancer can spread is via the lymph system. Sure, it's one of the ways, but cancer can also spread via the vascular (blood) system. Someone could have the doc take out 20, 25 or 30 nodes....all of which are negative....and still have cancer spread via the bloodstream. Cancer is about statistics....pure and simple....and again, there is NO GUARANTEE. Go for the surgery for the less than 1% risk but be prepared for very real potential problems from having a significant part of your descending colon removed. Just because surgeons can remove the colon and you can live without it, doesn't necessarily mean you want to. Sure, you want to remove the colon in cases where cancer has definitely invaded the wall of the colon, but you need to be aware that while you won't have LAR syndrome (you wouldn't because you wouldn't be having an LAR), removing the lower part of one's intestine causes issues. The descending colon is where fecal matter is stored up before entering the sigmoid/rectum and where the last of the water is absorbed to form more solid stool.

Again, Andrea....you just have to decide what is best for you. If having the surgery will calm you down...then do it. If you have any reservations....then don't do it. Just count yourself lucky that the cancer apparently never reached the colon wall....or you wouldn't have any choice.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

KarenE
Posts: 17
Joined: Sun Feb 14, 2016 1:56 am

Re: Big Decision

Postby KarenE » Thu Feb 25, 2016 1:22 am

Andrea, I was Stage 1 rectal, Haggit level 4....into the colon wall. The colorectal surgeon said I was likely stage 3 due to a couple of enlarged nodes which were evident on CT and rectal ultrasound. Had ULAR with ileostomy and it was only after this surgery that I could be staged- T1N0MX. No positive nodes out of 15 and distal margin 9mm, radial margin 15mm, so clear. Ileus and nasal gastric tube.... not pleasant but necessary. I was told prior to surgery that if the tumour had not reached the bowel submucosa it would be in situ...
Stage O and would definitely not have had open ULAR. Hope all goes well for you but after being around here for 3 years, I can tell you without a doubt that there are many on this forum who really do know their stuff. Please take on board their advice and follow up what appears to be the confusion regarding what the doctors have told you. Take care, KarenE (prev Carrie).
DX March 2013 rectal cancer,T1NOMX 0/15 nodes,lymphovascular invasion present/moderate, 2 liver lesions, 1 lesion spleen probable cysts. Parastomal hernia. Latest scan shows change/ bowel wall thickening at anastomosis site.


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