rectal cuff cancer

Hopefully you mean a rectal cuff of 2 cm not inches. I've read that after the surgeries the chances of cancer are some super small percentage But I would think if the reason you had your rectum removed was cancer like yours that you might have a higher chance of cancer. Please ask your doctor.

Lively,

Is there a reason they did not strip your cuff after a rectal cancer finding? I am a bit surprised by this.
Are you having or have you had any treatment or was the cancer in a very early stage (pre-cancer)?

I am assuming if they have eradicated your cancer your chances are equal to the rest of us who have had jpouch surgery and had no rectal cancer prior to the operation. I would highly recommend (as your surgeon probably already has) annual scopes and biopsies in your rectal cuff to be safe. I am following this protocol and they only found indefinite for dysplasia in my colon prior to my surgery with zero pre-cancer findings in my rectum.

Good Luck with your takedown.

I was told it is less than 1% . The reason for follow-up scopes. Best wishes!

I was diagnosed with stage 1 cancer. Luckily I went annually for colonoscopy. Very early and pathology said it was limited to a 2 cm. patch in the rectum, about 8 inches in from the anus. The attached lymph nodes were clear. My Mt. Sinai surgeon said that studies have shown no statistical advantage to stripping the rectal cuff compared to leaving the lining intact, in term of re-occurrence of cancer.
Thank you for your responses.

Funny, I just recalled what the surgeon said during my hospital stay during the step 1 j-pouch construction. He said I was totally cured of cancer (which is the best news) and that I am cured of UC. I'm thinking that is only partially true. The rectal cuff is still considered colonic material and hence can still get UC symptoms, albeit with much less total impact than if I still had my entire colon (which I do not anymore). Still, the cuff can have inflammation, which can lead to dysplasia which could theoretically lead to cancer, again. It seems at this point I feel as though I will always be waiting for the other shoe to drop.
I know the numbers are much more favorable for me now, and I try to put it out of my head, but it will take time for me to file it away where it will no longer creep into my daily consciousness. I will stay positive. Many people on this site are inspirational. That helps big time.
My take down is scheduled for 1st week in September. Wish me luck.

Stay positive and do not miss your annual scopes.
If they find cancer early (pre-cancer/dysplasia)
they may still be able to still remove the cuff and perform pouch advancement surgery where they sew the pouch to the anus after removing the cuff. My surgeon told me this is a relatively straightforward surgery as I have had issues with cuffitis since takedown that are finally resolving after 18 months. At least I believe this can still be done.

Good Luck Lively752, isn't that next week?

jeane - good to hear you've got your cuffitis is resolving! Do you think it was that all along and not pouchitis? Or were you lucky enough to have both!

I've been on anucort or canassa since mid January. I was instructed by my Mayo doctor to keep using canassa until things were under control and then to wean down to every other night to twice a week. I missed taking it a few times the last few weeks, long story involving my father's health. I got tested for C-diff because I thought I had it back and was relieved the test was negative. I've had fevers and some nausea so was thinking I had pouchitis. Today I produced a toilet full of blood. It's cuffitis back. I'm wishing I didn't have a cuff and don't understand how it can remain inflamed so much without inviting cancer in.

Dr. Loftus's nurses told me a few weeks ago that if I kept having C-diff infections he said they would treat with vancamicin, for I don't know how long, and if that failed they have been having good results with fecal transplants.

He didn't have such a good sounding plan for my cuffitis. My take down was 20 months ago. Did your doctor tell you the removal of the cuff surgery would make us incontinent?

Sorry for invading your topic Lady752. I read a paper written by Cleveland Clinic doctors a few days ago that said only 4% get cuffitis. I think they were talking about just UC patients as FAP and other patients don't get cuffitis. I could be remembering the percentage wrong but if I'd been told that before my surgeries I would have had the same surgery. I am not trying to talk you out of having surgery with a small cuff. It's a small risk of getting cuffitis and a smaller risk of getting recurring cuffitis.

Again, good luck with your surgery and please post and let us know how it went.

IT should be stripped if you had rectal cancer. One reason I didn't not have jpouch and went with the BCIR was rectal cancer I had. I only had a T1 but it can come back. My surgeon had a case he took on. Was the same thing I was looking at. Hers came back 6 months later after her jpouch take down and they had to start removing her butt and bones. It is a nasty cancer to have.

Please note that none of us are medical doctors. Your question should be directed to your medical team. We all have good intentions when we give advice, but somethings are beyond our knowledge.

Sue

Thank you for reminding me. I recognize that the contributors on this site have nothing but best intentions, and that the vast majority are not medical professionals. I do feel that there is always something to be gained by reading j-poucher's personal experiences, realizing that what is said is not necessarily gospel.
Again, I know it's your job to keep things "real". You illustrate to me that you are a very good moderator. Stay well, and thanks.

Also, keep in mind that not all rectal cancers are the same either. FAP has different histology and disease course than isolated rectal cancer or that associated with UC. Follow the recommendations of your oncologist.

Jan

Jeanne, thanks for the advice. Saw the surgeon today (final pre-op visit), and asked about cancer recurrence at the cuff. He said the numbers were very small and that procedures could be done through the anus, where appropriate i.e laser ablation, direct excision, cauterization as well as experimental cryotherapy. These are possible options in appropriate scenarios. The surgery you mentioned is also an option, as well as permanent ileostomy. Of course annual scoping is an absolute necessity.
Toughenough, thanks for the good luck wish. I'll take all I can get. Hope things resolve for YOU very quickly.

Thanks for posting what your doctor said about rectal cuff cancer options.

I hope your take down surgery went well. The next few weeks will not be pleasant, or possible hell, but will improve with time. You probably know all about it as you've been researching in this group.

Take care and please let us know how you are doing, when you feel up to it.

Hi Toughie,
The surgery went without a hitch (which rhymes with stitch). Actually 5 staples. A little dry medical humor, there. Staples come out Friday. Yes, I make frequent bathroom stops, about every hour on average, and sometimes when I go out and about, I find 1 might go every 2-3 hours. Hard to predict what my body wants to do, and when. All in all not bad. I know it will take the better part of a year for things to kind of find get balanced. Using peri-anal barrier cream with each trip to the bathroom, so have so far been able to keep the butt burn at bay.
I was not happy to hear about your belly button discomfort. I really do hope it resolves. Our bodies should know that we are all ready dealing with a full plate, no need for 'add-ons'.
But in the grand scheme of things, I see you are like the Unsinkable Molly Brown. I like your closing statement on your posts. I will adjust my sail. Thanks for your good thoughts.

Dear Lively752,

It sounds like you are doing great.

I'm a little embarrassed I posted about my belly button pain. It's just the latest in a long line of ills and pains I have. I feel much better than I did when I was at your stage of the process. It sounds like you are doing very well. You are brave to be out and about so soon!

Take down surgery went well. Was released after 3 days. Was doing fine for 1 week, then developed a blockage and went to hospital. It cleared after 3 days. The scan they performed while there, also revealed a clot in the portal vein to the liver. They say it occurs at least 20% of the time with this type of surgery. Have to be on coumadin for 3 months as a precaution until that resolves. I, got out this past Sunday. Luckily no surgical intervention. They seem to think it was caused by swelling at the reconnection point. Well even with these 'bumps' in the road, I still have a lot to be thankful for.
Cancer free, and colitis free and medication free (except for the temporary course of coumadin).

It is never good to have a blockage but fortunately they discovered the clot before it could reek much havoc.