Non cancer diagnosis for hemicolectomy

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Alanna
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Joined: Sat Feb 04, 2017 6:57 pm

Non cancer diagnosis for hemicolectomy

Postby Alanna » Sat Feb 04, 2017 7:28 pm

Because I have suffered from IBS for years I have just had my first colonoscopy. I am a healthy 63 year old female. The results were one polyp and a hemorrhoid. The polyp is not big (1-2cm) but flat and apparently not easily excised. The biopsy results are negative for cancer however, it is known to be a polyp that can develop into cancer in 10-20 years. I received this news from the surgeon recommended by the colonoscopy doctor. The recommendation is to have a right hemi colectomy. The reason I am reluctant to have this kind of surgery (besides the usual concerns of surgery and what I have read about the recovery period) is that I already experience IBS with frequent diarrhea. I do not want to risk colon cancer when that risk is able to be removed, but based on the surgeon's comments that I will be fine after the surgery (to remove a third of my colon). I want to know if anyone who does not have cancer has had this surgery? And---- is life the same, or did the residual effects of the surgery leave you with additional issues? I already have to adjust my life timetable and diet to the foods that do not suit me based on the stressors that create IBS.

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

Re: Non cancer diagnosis for hemicolectomy

Postby Utwo » Sun Feb 05, 2017 12:10 pm

You can get more answers on Crohn disease forum.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

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WriterGirl1969
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Location: Central NY

Re: Non cancer diagnosis for hemicolectomy

Postby WriterGirl1969 » Sun Feb 05, 2017 3:26 pm

Hi Alanna.

I can understand why surgery seems a bit radical for a polyp. My guess (and understand that it's just a guess) is that this type of polyp does typically turn cancerous, which is why they want to remove it. Since they can't remove it easily non-surgically, they opt for the other method. For something so small, it would most likely be done lapriscopically (sp?) vs. opening you up, which is a lot less invasive. However, it's still surgery. So what we would probably be telling someone with a positive diagnosis for colon cancer is to make sure you get an opinion from a *certified* colo-rectal surgeon! Maybe have them do a secondary colonoscopy to see whether A) they agree with the findings, and B) they would have the same recommendation.

Then, the bottom line is that this is your decision to make. Those of us who have had cancer would undoubtedly do almost anything to go back and have the chance to get it out before it ever turned into anything, but that doesn't mean that you would ever end up there. It's just a perspective.

Also, in case it helps, I had a hemicolectomy and was home in 3 days, and back to work in 2 weeks. While that isn't always a typical recovery time, I just wanted you to know it doesn't automatically mean a horrible long-recovery event, and if you have a chance to avoid cancer... food for thought. :)

Best of luck to you.

Hugs and prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

zx10guy
Posts: 233
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Re: Non cancer diagnosis for hemicolectomy

Postby zx10guy » Sun Feb 05, 2017 3:42 pm

I understand your concerns and maybe my story will add something useful for you to think about.

A quick background on me. I don't have IBS but was diagnosed with Stage 3b colon cancer back in 2012 with the tumor in my descending colon. I had a left hemicolectomy and went through 12 rounds of FOLFOX6 chemo. Last year during my 6 month checkup, I had an abnormal CEA result even though a CT with contrast showed all clear prior to the CEA test. A retest was done to ensure it wasn't a lab error or something else. The retest was even higher. A PET was ordered and deemed normal by the radiologist. The only diagnostic I hadn't done was a colonoscopy which I was due to have anyways.

During the colonoscopy, we just happen to be lucky to see the polyp in my appendix near the opening. My GI doctor took as many samples as he could given that a decent amount of the polyp was hidden in my appendix. The biopsy results came back as high grade dysplasia. Not cancer but not great either as it's the last phase before the cells turn into cancer. This started the debate of whether a regular cecectomy or a right hemicolectomy was warranted. My surgeon said due to my past history and given the high CEA readings, he wanted to go aggressive and do a right hemicolectomy. My wife felt the right hemicolectomy was too drastic of a procedure. In the end, I opted to follow my surgeon's advice and have the right hemicolectomy.

The pathology results came back and the polyp was actually cancerous. Fortunately, the cancer didn't have time to develop so I was staged as Stage 0. Even though there wasn't any other spread, my surgeon said we now know for sure instead of guessing if there might be other spread.

My life so far with only half of my original colon now because I lost the descending from the first surgery and now I lost the ascending colon along with some of my small intestine has been actually pretty normal. The only complication I had was an infection/allergic reaction from the sutures. Took me almost 6 months to get over that issue.

So while the biopsies done may give you a good feeling you're clear, it depends on how spread out the samples could have been taken to ensure all areas of the polyp were sampled. I think the only way to know for sure with a flat polyp is to resect the area and to examine the entire cross section under a microscope. So in many ways, your situation is similar to mine as my GI doctor could only sample the area he could reach with the scope.

Alanna
Posts: 4
Joined: Sat Feb 04, 2017 6:57 pm

Re: Non cancer diagnosis for hemicolectomy

Postby Alanna » Sun Feb 05, 2017 7:28 pm

I really appreciate the responses to my post. This is an extremely hard decision for me. If I was told I have cancer - there would be no doubt or question in my mind -- I would have the surgery asap. Being told it is "pre-cancerous" (low dysplasia actually), slow growing and could take 10-20 years to manifest to cancer IF it does at all, but that the recommendation is still for a surgery that requires me to lose a third of my colon is blowing my mind.

I really am interested in the statistics of those that have had the surgery and have no long term colon problems vs those that are having problems due to the surgery (not additional treatments such as chemo). I am afraid to lose more of my quality of life (IBS does make one plan differently than those that don't have it) on the chance that far down the road something bad may happen. And of course my brain flip flops back and forth over the opportunity I am being given to keep from having that dreaded cancer diagnosis. Who can be so stupid as to give that up??? Anything anyone can add is helpful to my decision process. Thank you

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Non cancer diagnosis for hemicolectomy

Postby Utwo » Sun Feb 05, 2017 9:40 pm

My 3.5 cm sessile polyp was piecemeal removed during colonoscopy.
Margins were reported as clear, but it was not 100% certain.
My surgeon recommended right hemicolectomy in "prophylactic purposes".
Next step was review of my case by a "review board".
This board agreed with recommendations of my surgeon.
I felt comfortable with their recommendations and on a balance of probabilities wanted hemicolectomy surgery myself.
-----
In 4 days after a laparoscopic surgery I was out of hospital.
Then I was readmitted to a hospital and was back home in a day.
Then I was readmitted again and was back home in ten days.
-----
In three months my bowel movements pattern has stabilised and I restarted my exercises.
Now, eight month after a surgery I have not reached my pre-surgery endurance yet. I am still recovering.

I live in Canada where our main problem is waiting time.
So I was not concerned that they wanted to do a surgery that was not really needed.
In the US you need to be more careful about such "prophylactic" surgeries.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

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Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Non cancer diagnosis for hemicolectomy

Postby Cowgirl918 » Tue Feb 07, 2017 12:35 am

Your situation has many similarities to mine. I did not want the complications of right hemi-colectomy for many reasons so I opted for EMR (endoscopic mucosal re-section). Best decision I ever made. I had two procedures in one year and biopsies came back cancer free. My polyp
was large (4.5cm) but was re-sected without open surgery. I am scheduled for re-check in August of 2017 and I am relatively symptom free. Would do it again in a heart beat even if it only buys time.
The decision is clearly yours but consider all options before deciding. Quality of life was my primary driver. Make sure you include your doctor and support system in the discussion.
Good luck!
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%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery

ayellesse
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Joined: Thu Jan 26, 2017 11:36 am

Re: Non cancer diagnosis for hemicolectomy

Postby ayellesse » Tue Feb 07, 2017 10:13 am

Cowgirl - I posted a topic asking for experiences with surveillance rather that colon resection "Surveillance for HGD in Resected Polyps?" It sounds like you might qualify, at least for the surveillance (follow-up colonoscopic resections and biopsies). Did your polyp biopsy show any dysplasia? I don't want to derail this thread, so could you please reply to my origical topic thread? I would really appreciate it. Thanks so much. - Aye
Last edited by ayellesse on Tue Feb 07, 2017 11:02 am, edited 1 time in total.

ayellesse
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Re: Non cancer diagnosis for hemicolectomy

Postby ayellesse » Tue Feb 07, 2017 10:45 am

Alaina - I am in a similar situation where prophylactic colon resection was recommended. Do you know why the polyp is considered difficult to remove? Large, flat (sessile) and location are among the reasons. However, a skilled colonoscopist can successfully resect even these. Here is a link to Jim Sease's very educational website where he explains in great detail the steps he took to successfully avoid prophylactic colon resection for a difficult polyp:

http://www.sease.com/polyp/emr.html

As well, there is a newer procedure that involves laparascopic assisted colonoscopy when the polyps are in a difficult location. The polyp is removed through the colonoscope while the colon is left in tact. I actually contacted this particular facility sending them the colonoscopy report and images and both the surgeon and the gasterenterologist determined that my difficult polyp could be removed with regular interventional colonoscopy.

https://connect.uclahealth.org/discussi ... rts-story/

You have some time to do some research and get a second opinion from an experienced interventional gastroenterologist. I'm not sure a colorectal surgeon can tell you that a polyp cannot be removed by a skilled interventionist, but perhaps there are some who can and who would be objective.

Alanna
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Joined: Sat Feb 04, 2017 6:57 pm

Re: Non cancer diagnosis for hemicolectomy

Postby Alanna » Fri Feb 10, 2017 6:12 pm

Thank you for the information on the EMR and link to Jim Sease's website. My polyp is not particularly large, only 1-2 cm, difficulty is that it is flat and located right at the cecum. I will definitely be doing more research. I do have Kaiser coverage and I felt from the first moment the surgeon recommended the right hemi that it was because that is Kaiser's standard protocol. It was all so matter of fact, as though losing a third of your colon is just no big deal......Made me wonder if the surgeon were given that diagnosis herself if a she would jump right into a hemicolectomy. I wonder also how Jim managed to get Kaiser to cover the procedure? Good information, thanks again.

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

Re: Non cancer diagnosis for hemicolectomy

Postby zx10guy » Sat Feb 11, 2017 6:33 am

I highly doubt any insurance would have set protocol for these types of medical procedures...especially anything involving surgery. Unfortunately, health insurance has lost their initial mission of doing managed care. It's now all about for profit and minimizing costs. My insurance company which has been pretty good so far with approving all the various scans and procedures started to question all the claims filed last year over my surgery and follow up upper GI scopes. They actually initially denied the surgery claim for removing my cancerous polyp despite my past history and pathology coming back saying it was cancerous. They did an automatic self review and requested additional documentation from my surgeon and only upon automatic appeal/review, did they agree to pay it. A review done by their on staff medical doctor who is a plastic surgeon :roll: .

I also got a letter regarding them holding payment on my claim from the endoscopy done based on my GI doctor wanting to make sure the upper GI is ok due to all the craziness going on with my lower GI. I told my GI doctor this on my follow up visit after the endoscopy and he just rolled his eyes and said he'll take care of it. And the endoscopy revealed I have gastritis, H pylori, some benign lesions, and some early onset ulcers. Not exactly a clean bill of health. To add further insult, my insurance denied my doctor's prescription for Pylera to treat the H pylori bacteria. He was so upset with this stupid decision he scrounged up enough Pylera drug samples in his office to give to me for free so I can get under treatment.

In the end, it's your body and your decision. As I stated, I can't relate to dealing with IBS on a daily basis. And as a correction, the right hemicolectomy isn't going to be taking a third of your colon. It's only a quarter. There are 4 parts of your colon: ascending/cecum, transverse, descending, and sigmoid. As I said, I'm functioning rather normally with only half of my colon still intact but then again I don't have IBS. I can tell you one thing, if on the off chance things do go bad, having to deal with cancer is something you probably don't want to risk.

ayellesse
Posts: 8
Joined: Thu Jan 26, 2017 11:36 am

Re: Non cancer diagnosis for hemicolectomy

Postby ayellesse » Mon Feb 13, 2017 2:54 am

Alanna - I also have KP, in Colorado. Perhaps KP didn't have the technology or skilled physicians in EMR at the time Jim was initially diagnosed. Thus they agreed to cover the procedure. I was recommended surgery last September after my first colonoscopy initially full colectomy and then right hemi and sigmoid). The polyps had been biopsied (but not removed) and were found to be benign. I opted out if prophylactic surgery. My original KP gastroenterologist (skilled in EMR) ended up doing EMR for both polyps last month, one in cecum and the other in sigmoid. The new pathology report came back high grade dysplasia. See my post entitld "Surveillance for HGD in Resected Polyps." They continue to recommend surgery, but are willing to do surveillance at my request. My next colonoscopy is in April and they will biopsy the former polyp sites and remove any regrowth. I'm waiting until at least then to make a decision about surgery. I would look into UCLA and the CELS procedure as well. Let me know if you want more details on my experience with that and we can PM. ~ Aye

Alanna
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Joined: Sat Feb 04, 2017 6:57 pm

Re: Non cancer diagnosis for hemicolectomy

Postby Alanna » Fri Feb 24, 2017 6:11 pm

To Ayellesse -- yes would like to keep in touch and see how your surveillance goes. I can't seem to figure out how to pm you....Do I need to have you accept me as a "friend"?

mcac15
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Re: Non cancer diagnosis for hemicolectomy

Postby mcac15 » Sun Jun 17, 2018 7:57 pm

What did you decide to do? I am in your same situation right down to IBS.

mcac15
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Re: Non cancer diagnosis for hemicolectomy

Postby mcac15 » Sun Jun 17, 2018 8:01 pm

Alanna wrote:I really appreciate the responses to my post. This is an extremely hard decision for me. If I was told I have cancer - there would be no doubt or question in my mind -- I would have the surgery asap. Being told it is "pre-cancerous" (low dysplasia actually), slow growing and could take 10-20 years to manifest to cancer IF it does at all, but that the recommendation is still for a surgery that requires me to lose a third of my colon is blowing my mind.

I really am interested in the statistics of those that have had the surgery and have no long term colon problems vs those that are having problems due to the surgery (not additional treatments such as chemo). I am afraid to lose more of my quality of life (IBS does make one plan differently than those that don't have it) on the chance that far down the road something bad may happen. And of course my brain flip flops back and forth over the opportunity I am being given to keep from having that dreaded cancer diagnosis. Who can be so stupid as to give that up??? Anything anyone can add is helpful to my decision process. Thank you


What did you decide? I am in your situation now. I have IBS. They found a submucosal mass in my cecum. Couldn’t biopsy it. No way to know if it’s benign or malignant so recommending Right Hemi. Sounds so drastic.


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