I need help: Doctor recommended Colectomy

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Dawgh
Posts: 6
Joined: Thu Mar 20, 2014 12:09 pm

I need help: Doctor recommended Colectomy

Postby Dawgh » Thu Mar 20, 2014 12:25 pm

Hello -

I'm a 48 year old male with about 25 years of UC. Just got the results back from the last colonoscopy. They found about 6mm of high-grade dysplasia in the part of the colon closest to the small intestine. The doc recommended complete colon removal ASAP. My head is spinning, I didn't see this coming. I read a little through this helpful forum, but found myself jumping erratically from this to reading medical papers and back. Maybe I just have to let the facts sink in first. What have some of you done after hearing the news? Does it make sense to research this or is the science settled on a complete colectomy? Any help would be greatly appreciated.

Thanks,
D.

jscho
Posts: 417
Joined: Sat Apr 18, 2009 10:01 am
Location: Toronto, Canada
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Re: I need help: Doctor recommended Colectomy

Postby jscho » Thu Mar 20, 2014 2:49 pm

Sorry to hear about the dysplasia. About 2 years after a stage IIIc cancer diagnosis and right hemicolectomy for a tumor found in the cecum (where your dysplasia is), I had a routine colonoscopy and 2 DALMS (dysplasia associated lesions) were found. One GI specialist recommended watching it, which made me very uncomfortable after reading the literature. I consulted with a surgeon, who said that with high-grade dysplasia, there is something like a 25% chance there is actual carcinoma somewhere. He recommended a total colectomy. This is the usual recommendation.

I too had UC or some form of very mild Crohn's for around 25 years before my diagnosis. Since the disease didn't seem to involve the rectal area very much, I pushed to have a sub-total colectomy with ileo-rectal anastomosis. I preferred to avoid an ileostomy, figuring that I could always go that route if needed. The surgeon thought this was a reasonable (though not ideal) thing to do. I had the surgery 1.5 years ago, and have been doing well. The downside is that I still need regular colonoscopies, but this is a very minor procedure since I only have 14 cm of colon left. My lifestyle has certainly been affected to some extent, but life with little colon is still manageable.

You might want to discuss this as an option.

Best,
Jeremy

p.s. As for the cancer, I have now passed 5 years from diagnosis with no recurrence. I have been extraordinarily lucky.
Colon cancer dx Feb. 24, 2009, T3/N2/M0
Right Hemicolectomy Feb. 26, 2009
Stage 3C: 4/19 positive nodes
High grade adenocarcinoma with tumor budding
FOLFOX6 April 15 - Oct. 1, 2009
Elective sub-total colectomy July 3, 2012 due to 2 DALMs
Currently NED

Dawgh
Posts: 6
Joined: Thu Mar 20, 2014 12:09 pm

Re: I need help: Doctor recommended Colectomy

Postby Dawgh » Thu Mar 20, 2014 3:04 pm

Jeremy,

thanks for your thoughts and suggestion. I will follow up with a surgeon within a week. Your message gave me some hope. I am happy to hear the good outcome in your case.

Thanks again,
D.

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: I need help: Doctor recommended Colectomy

Postby orcasres » Thu Mar 20, 2014 3:28 pm

My husband has had UC since the early 70's. His is near the end of the colon. He was told early in his diagnosis, that it would probably be cancer (which has not happened) within 10 years and if that happened the plan would be a colectomy. Things have obviously changed a lot since then, so hopefully there are some other options that would be recommended now. I wish you good luck in your discussions with the surgeon.


Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: I need help: Doctor recommended Colectomy

Postby Cherie » Fri Mar 21, 2014 2:21 am

Dear Dawgh,

Get it done. Do not end up like me where the UC turns into four big fat tumours. You can get a jpouch and live pain free for the rest of your life.

Good luck
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: I need help: Doctor recommended Colectomy

Postby Guinevere » Fri Mar 21, 2014 9:19 am

There's also a very helpful forum on the United Ostomy Associations of America http://www.ostomy.org. I know there are a lot of people on that board who've had to deal with UC for years and found an ostomy actually gave them the freedom to have a better life. I hope they're able to be a help to you.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

Dawgh
Posts: 6
Joined: Thu Mar 20, 2014 12:09 pm

Re: I need help: Doctor recommended Colectomy

Postby Dawgh » Fri Mar 21, 2014 10:57 am

Thank you all for your helpful replies. I very much appreciate them. A day after the diagnosis I am starting to lean towards a complete colectomy. I thought about it a lot last night. I am a person who just wants to get rid of potential future problems such as cancer, even if it comes at a price of having to go to the bathroom 8 times a day -- I'm excluding potential J pouch problems here of course.

Thanks for pointing me to the other forum / website. I am sure I'll spend my weekend searching a lot more.
D.

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: I need help: Doctor recommended Colectomy

Postby nicola smith » Fri Mar 21, 2014 11:17 am

...almost the same as you dawgh - long term UC (35 years) but I actually developed a malignant tumour in the sigmoid as opposed to your situation of a very early stage finding in the cecum and YAY for that. There's a long sad story about why mine wasn't found earlier too and I won't bore you with it.

At any rate, my whole colon was removed, a temporary ileostomy put in place and a jpouch created. I had the ileostomy throughout chemo and for a year after. Then the ileostomy was closed up and the jpouch made operational. The jpouch has been very effective as a replacement for my old colon and my toileting routines are pretty much back to normal.

People with UC are at a higher risk of developing pouchitis which is essentially uc in the jpouch. To avoid that, I take VSL3 antibiotics daily.

http://www.VSL3.ca

Expensive but worth it.

The UOAA site was a great help to me.

Good luck
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: I need help: Doctor recommended Colectomy

Postby nicola smith » Fri Mar 21, 2014 11:37 am

p.s. I should add that my GI always told me that I would likely need a colectomy one day owing to the number of precancerous cells and polyps he found over the years.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

Mrsrob1000
Posts: 22
Joined: Sat Mar 22, 2014 1:13 pm

Re: I need help: Doctor recommended Colectomy

Postby Mrsrob1000 » Sat Mar 22, 2014 1:55 pm

My husband has a laproscopic subtotal colectomy Jan 8, 2013 which removed his assending, transverse and distending colon. He did not get a bag and did very well. Unfortunately, he was never advised to have adjuvent Chemo after the surgery. Last month, it came back near the suture line.
DH 71 Cancerous Tumor 10/2012
Subtotal Colectomy Stage IIB pT4A NO MO 1/2013
Evidence of Metastatic Disease: 3 Small Lung & 1 Liver Nodule 2/2014
Resection of Ileosignmoid Stage IV N3 2/2014
Xeloda 3/2014; + Avastin 5/2014
More lung mets/Liver 7/2014


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