The Colon Club

I am 58 years old male. I have Lynch Syndrome and have had two colon cancers in the past. My last colon cancer was 10 years ago and I underwent three surgeries (segmental colectomy) and two rounds of chemotherapy. I have gone the past ten years with no trouble, but recently, my doctor found two polyps near the splenic flexure of my colon. Because of their large size (>2cm), he was not able to remove them during the colonoscopy. The biopsy indicates that both polyps are precancerous--specifically, tubular adenomas with high grade dysplasia. I have been getting annual colonoscopies for 10 years. The fast development of the polyps within one year made my GI doctor quite uneasy. Since I have Lynch Syndrome, he suggested that I get a radical surgery where only 3cm of my rectum is left and I need a J-pouch (to act as a reservoir for stool). This procedure will require three surgeries. I understand that Lynch Syndrome may increase my chance of getting rectal cancer, but my prior cancers and polyps were all far away from rectum. I am leaning towards either an ileorectal anastomosis or an ileosigmoid anastomosis without a J-pouch. Basically, I am leaning towards just getting one surgery instead of three where a J-pouch is created.
I know the decision is based on two factors: 1) getting another cancer in the future and 2) having a relatively good quality of life. I am wondering if some of you have also faced this dilemma. If yes, would you please share your experience?

Not quite this dilemma, but after reading the research on QoL after bowel resection I was quite keen on having a J-pouch done as part of my ultra-low anterior resection. Two surgeons independently told me my pelvis was too narrow to confidently do it without issues (I’m a reasonably trim 32-34 inch waist guy), and that it only made a real difference to bowel function within the first 12 months anyway (until the remaining bowel distends to create more storage).

I went ahead and had most of my rectum removed (about 3-5cm left) without a J-pouch, and after a few months of some serious adjustments things are now much better than I was warned they could potentially be. If you are keeping some rectum (as it sounds like you are), then good function is still definitely possible - especially with some of the more useful lifestyle adjustments and techniques you can try.

Ultimately if things are intolerably bad you also always have the option of an ileostomy (which I had for 6 months, and was also fine after a bit of an adjustment period).

Anyway, just one man’s experience. Best of luck for the decision and surgery.

Rob

Hi Rob,
Sorry to reply you late. I have been in contact with surgeons last week. Your experience is really encouraging. I really appreciate your support!

Fight4Life

Wait a minute. If you have Lynch, I assume you are dMMR and MSI? Have they discussed trying Keytruda or other immunotherapy? Personally, I would strongly suggest taking a serious look at immunotherapy rather than launching into such a surgery!

Please respond to my post! I am very concerned about the situation you describe!!

Hi Boxhill,

Thank you so much for your concern! This time my polyps are still precancerous. However, their sizes were too big for the GI doctor to remove during the colonoscopy. Considering my genetic condition (Lynch Syndrome), the surgeons recommended ieorectal anastomosis as probably the best option. My oncologist also told me of the promising new drug - Keytruda. Hopefully I do not need it after the surgery though.

Thank you again for your caring!

Fight4Life

If you try Keytruda you might not need surgery! Keytruda is nothing like undergoing chemo for most of us, and infinitely preferable to a surgery that is likely to leave you with life-altering rectal issues.

I urge you to discuss this in greater detail with your oncologist before proceeding with surgical advice only.

boxhill wrote:If you try Keytruda you might not need surgery! Keytruda is nothing like undergoing chemo for most of us, and infinitely preferable to a surgery that is likely to leave you with life-altering rectal issues.

I urge you to discuss this in greater detail with your oncologist before proceeding with surgical advice only.

My understanding is that PD-1 checkpoint inhibitors like Keytruda are still only used standalone in MSI-H cases where surgery isn’t an option - ie unresectable. Keytruda can indeed be very effective but the response rates are far from 100%, and a treatment failure in this case (having forgone surgery) could be highly detrimental or even disastrous. With the option of surgery on the table (pun not intended) which is almost certainly curative for this particular occurrence, I think it would be very compelling to proceed with this plan (although as you point out the QoL implications are real, and we should all be informed about that). But personally I’d take that combined with an almost certain path to long-term NED.

I don’t know about the logic for adjuvant Keytruda given the Lynch setting - that could be one to ask about.

Cheers,
Rob

I know at least one person with Lynch and rectal cancer who is doing adjuvant O+Y, but IIRC he was not NED after surgery. I personally had Keytruda (successfully so far) after failing adjuvant FOLFOX.

It sounds like ileosigmoid anastomosis probably is better in terms of post-surgical control and QoL, the more sigmoid left the better. My best to you, Fightforlife, whatever you decide.