Prophylactic subtotal colectomy after right semi-colectomy

[mike's wife]

My husband is scheduled to have a subtotal colectomy in early December. In July 2010 he had a right semi-colectomy, but after much research, discussion, etc. it has been decided that a subtotal colectomy is in his best interest as he also has Lynch Syndrome.

Has anyone else gone from a semi-colectomy to a subtotal colectomy? What should we expect post-op? How different is body function after the second surgery compared to the first time around? Just curious.

Thanks!

[lisacc123]

This is a tough one, and a decision I've battled with myself. In the end it's a very personal choice.
I'm scheduled to have a right-hemi next week to remove a pre-cancerous polyp. I also have Lynch but decided ultimately to go for the lesser option and continue with regular scopes. If another polyp/cancer arises at a later date I will cross that bridge when I come to it.
In my family, my grandfather, uncle, brother and cousin all had right-hemis at their time of diagnosis. My grandfather never had any further problems and neither have the rest of my family. One of my other cousins, however, has indeed had 90% of his bowel removed. We're not close, but I believe he does just fine with it.
I wish your husband much luck with the procedure. Do let us know how he gets on.
All the best, Lisa

[KimT]

I decided to keep as much colon as possible to preserve function. When my grandfather had his total colectomy, his bowel function never went back to anywhere near normal and it really affected his quality of life. The recommendation for those of us with lynch is to get yearly colonoscopies. Since colon cancer is slow growing, this is usually sufficient to catch any polyps before they become a problem. If I get colon cancer again, I will probably opt for the subtotal colectomy. But I didn't want to be hasty in getting rid of all of it knowing how it affected my grandfather. Once it's gone, it's gone. You cannot take it back. I had a second resection a year later to remove the metal clips were used in the first surgery and I still chose to keep the rest of my colon since there was no cancer involved. I'd really think hard about deciding to get rid of everything, especially if he doesn't have cancer again. I've had two resections and that surgery isn't a picnic. I would never do it again unless necessary. And if he is getting his colonoscopies yearly, there is a good chance he will never have cancer again or that it will be caught in a very early stage if it does occur. There is also the fact that some colon will remain so he could still get colon cancer. For me, I believe the cons outweigh the pros in doing a prophylactic subtotal colectomy. I've had two colonoscopies since my first resection. The first showed ulceration at the anastamosis site which is why I had the second resection. I had one last week and there was only 1 polyp and some inflammation at the anastomosis site. I think this confirms that I did the right thing. One polyp in two years after surgery.

[adina91]

I opted to have the subtotal after my initial sigmoidectomy. My situation may have been a little different though. The first surgery was done as an emergency procedure, I was completely obstructed and the only tumor that showed up on the ER CT was in my sigmoid. After the surgery (with colostomy) I started chemo, but my CEA was rising so they ordered a PET during which they discovered a second tumor in my right colon that they had not spotted on the initial CT. It had been there all along. I decided at that point to just do away with the whole colon. I almost felt a hatred toward this diseased organ that was ruining my life. I was also worried about bowel function but one year after reversal( I initially had an ileostomy), things have settled down quite a bit. its just a matter of finding the right diet. I do still have occasional uncomfortable days and it did take a few months to get used to my new plumbing, but I certainly do not regret it.

Like others have said though, it is a very personal choice and if you are vigilant about getting regular scopes, that is also a great option. For me, the other tumor is what made my decision. I decided if I had more primaries, I didn't want to have to keep going in and getting resected. Let us know!

[mike's wife]

The biggest issue for Mike stems from a polyp that was removed from the left side of his colon in June 2010 at the same time the cancer tumor was discovered on the right side. Because the surgeon had just removed the polyp he was unable later to find the location again in order to keep a better eye on it.

The polyp was precancerous, aggresive and with high instability (nearly the same characteristics as the full blown tumor). The concern of the experts at UW Madison is that there is a 20% chance that polyp will become cancer and that, because of the removal procedure, it would grow in the opposite direction (towards the outside of the colon) rather than inward where it would be found by a colonoscopy. We have talked with several people who had yearly colonoscopies only to end up with Stage II colon cancer less than a year later. Apparently Lynch Syndrome colon cancer tends to occur on the right side, so the fact had this polyp on the left side has them concerned as well.

It took Mike about 6 months for his body to regulate following the first surgery. He's obviously not where he was prior to surgery, but it's very manageable for him and only an occasional inconvenience. Because he is "young" and healthy, he has a better than average chance of a positive outcome and his body should recover more quickly than the norm. Last year following his right semi he was out of the hospital in less than 4 days.

I'm certain this is the right decision for us regardless of the difficulty. As my husband put it, "I'm not 'regular' now and I think about getting colon cancer again. After this surgery, I still won't be 'regular', but I won't constantly be thinking about getting colon cancer."

[adina91]

I like that quote a lot! That was my view on it as well. Good luck to Mike with the surgery and recovery!!! let us know how it goes!

[nicola smith]

I'm not sure how relevant this is...if it isn't, please forgive me.

When my 6 cm sigmoid tumour was discovered, I was given no choice about leaving part of my colon behind. The surgeon said total removal was the gold standard, and that was it.

Consequently, I had a total colectomy and a temporary ileostomy for a year. I had a jpouch takedown this past March.

Today, my bowel movements are better than my old normal (with colitis) and pretty close to normal normal. I use imodium and psyllium as regulators and take a daily dose of strong probiotics.