Postby Soccermom2boys » Wed Mar 16, 2016 5:11 pm
You and I have similar situations. I was diagnosed back in August with a large tumor in the distal rectum that was right up against the anal verge. I too had the exact same chemoradiation schedule, my Xeloda was 2600 mg per day I believe. At any rate, I was rather bummed to have gone through the physical pain of radiation to have my tumor shrink very slightly as well (and yeah, those digital exams do hurt, I can feel your pain on that, literally!). So because it did not have much change in size and was still too close to the anal verge to get clear margins that meant I needed a permanent colostomy with my APR surgery. Yes, this is not what anyone wants to hear or have happen, but hard to turn it down when the alternative is most likely you leave open a greater opportunity for the cancer to linger unknowingly. My surgeon knew I wasn't thrilled with the idea, but as he has done his fair share of surgeries he said that he has seen many patients who did not go the ostomy route and live a life with fecal incontinence issues and would have a better quality of life had they done the ostomy in the first place.
So tomorrow is actually three months since I had my APR surgery and I am getting used to my new lifestyle. Not going to lie, not always ideal, but not as horrible as I think you originally think it will be. On a good note, a colostomy versus an ileostomy offers the chance to "irrigate" and not have a pouch attached to you 24/7. I am going through adjuvant chemotherapy right now so not going to try irrigating for some time, if at all, just kind of taking it one day at a time to see how it goes.
Based on all that I have read, most especially on this forum, this really is the standard of care for rectal cancer so rest assured that even though you are at a teaching hospital you are getting the same care as at probably any other hospital. Wishing you the best, it definitely is a long and mentally and physically grueling process, but eventually one day turns in to another and you are through the surgery and recovering. As many have said on here, it is absolutely a day to day mindset that gets you through. After my surgery, every morning when I woke up and got up out of bed that was my daily yardstick for measuring progress--did I at least feel better than the day before? Time does march on as do we so eventually this will be in the rear view window.
Also, if you do go the colostomy route I would strongly suggest checking out the forum on UOAA (United Ostomy Assoc of America) website. Excellent resource of regular folks dealing with the day to day of having an ostomy. Will be thinking of you, good luck with your next leg of the process, better days are coming!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox