Colon/Rectal stage 4 cancer

Ultimately the surgery is very much a question of personal perspective.

I had severe ulcerative colitis that interfered with my life. But I vehemently opposed surgery and kept trying things. I failed Humira (which triggered neuropathy and contributed to a stroke), failed Entyvio, failed Stelara and had major bouts of recurrent cdiff (with the last case landing me in the hospital and a SNF for a month). Yet I soldered on and refused to consider surgery.

Finally I got results with Rinvoq. In 6 months I went down to 1 or 2 BM a day and had significant mucosal healing such that my UC went from a characterization of severe to mild.

However the colonoscopy that confirmed these results also identified an area of high dysplasia. I had an EMR to remove the dysplasia. Unfortunately the pathology report showed a small area had already converted to colon cancer.

They thought they probably got everything with the EMR, but there was a possible question about the edges. A "wait and see" approach with heightened surveillance was offered as an option. But I was 68 at the time and felt that it was almost inevitable that I would develop colon cancer again sooner or later, and that would almost certainly lead to surgery and probably radiation and/or chemo. As much as I didn't want a colectomy, I wanted to avoid chemo and radiation even more.

So I viewed the choice as (1) go with surgery right away or (2) wait and hope for an extended period before cancer recurred.

I had had the opportunity to consult with a colorectal surgeon and a couple of WOCNs (suggested by the surgeon when I asked practical lifestyle questions) a couple of years before and had an opportunity to talk to him again at this point. He agreed that wait and see was a reasonable choice.

But in the end I went with a total proctocolectomy with end ileostomy. As expected, they were able to confirm the EMR took care of the initial cancer and there was no need for chemo or radiation.

I have no regrets. The impact of an ostomy is largely a matter of attitude. There are some that can't seem to come to terms with the ostomy. But most grow to accept it and are thankful. And although it is something you have to deal with, it is not particularly limiting and you can lead a full, normal life.

One observation, someone who has dealt with serious UC has almost certainly had to deal with poop. That makes it a lot easier to avoid freaking out when you have to deal with the mechanics of controlling the ostomy output, and you can probably accept that it is not the end of the world if you are unfortunate enough to develop a leak so that you would not be paralyzed by fear of a public accident.

I don't know what your risk of reccurence is and whether your risk is localized in the colon so that a colectomy would effectively block recurrence. But if these comments makes sense to you, I recommend you seriously consider surgery.

Also, at the time I made this decision I had in the back of my mind experiences of my mother, father and sister with chemo and radiation. Since then my husband developed GEJ cancer and went through 11 cycles of FOLFOX. To say that was AWFUL and that it affected quality of life would be an understatement.

With FOLFOX, radiation and cdiff, I would guess that your quality of life with cancer treatment was pretty bad. The potential impact of a colectomy is nothing in comparison to that.

I'm hoping you have a good outcome whatever you decide.

I forgot to explain that I originally planned to get a j-pouch. But after considering things I went with an end (permanent) ileostomy instead.

-- I had pancolitis with inflammation and ulcers all the way through including the sigmoid. So I figured there was at least a small risk of colon cancer in the pouch remnants.

-- More importantly, pouchitis is common and typically treated with an antibiotic, often Cipro. The CR surgeon didn't think that was such a big deal, until I explained I am effectively allergic to Cipro and Flagyl + would be concerned about an antibiotic triggering recurrent cdiff (less likely but still possible after removal of the colon)

-- But most important was a quality of life issue. The CR surgeon said I would have to be prepared to have 6 - 10 movements / day + without a sphincter muscle it would be very hard to control. I couldn't take going back to that. With an ileostomy I may empty the bag as much as 6 - 8 times a day. But it is at my convenience.

The surgeon offered to do a partial surgery that would leave me the option to change my mind and go with a j-pouch, but if I decided to stay with the ileostomy he would go back in with a second surgery to clean things up.

So a one shot end ileostomy it was.

Thank you for your time in replying to my post. My UC has been under control for years, but they bring it up after every colonoscopy. What complicates things is I had high dose rectal radiation in 2016, colon resection in2022 and then everything came back in 2024. I guess a lot will depend on the results of my MRI. I did tolerate the initial Folfox therapy fairly well, no major issues. It was when they put the Folfox together with radiation twice a day that I started having problems. If I hadn't brought up the fact that I felt the cdiff was back and I was in the bathroom 35 times in one day I think they would have just pushed on with the radiation. The second bout of cdiff was basically my fault, I had a sinus infection and asked for an antibiotic and they gave me one!!!
I am glad to hear you appear to be doing well and I appreciate your thoughts.