Postby bathroom_tile_blues » Thu May 07, 2015 2:24 pm
Hey there,
I have been a lurker of this site since my diagnosis in January. I will give you a little background in hopes that it might prove beneficial to you and anyone else that might be going through something similar.
I'm a 31 year old guy who was tested for Lynch Syndrome in the fall of 2014. My brother and I were tested for this because my father battled colon cancer twice about 20 years ago and has had a family history of similar, unbeknownst at the time, Lynch cancers in his family that had proven fatal. My brother was found not to have the gene, but I did have it (MSH2). The next steps entailed meeting with my primary care doctor and a GI to begin the routine testing for Lynch patients. I met with those doctors, discussed any issues I may have had at the time (none) and scheduled my first endoscopy and colonoscopy (and blood work, urine tests, etc.). Ultimately, everything came back normal with the exception of my colonscopy. The colonscopy identified a 30mm polyp/tumor/whatever you want to call it on my ascending colon. They biopsied it and found it to be cancerous and away we went. I met with a surgeon a few days later and he proposed three options: 1.) partial colectomy (site of tumor/polyp/bs) 2.) total colectomy (leaving about 6 inches) and 3.) total removal and installation of J-pouch. The doctor gave percentages of likely recurrence for each procedure with the partial having the highest. I opted for the total colectomy based on my father's experience. He had the same cancer in the same location, but it came back where it ultimately resulted in something close to a total colectomy. From there we had more blood work and a CAT scan that came back "pristine". My CEA level prior to surgery was 1.2.
I went in for the surgery less than a week later and it was performed laproscopically. I was discharged prematurely after about 36 hours that resulted in some vomiting and pain, but was readmitted 24 hours or later. Since then, my recovery has been pretty good. I was up on my feet and walking a couple of miles about 2 weeks after surgery. I was initially having about 5-6 bowel movements a day that have slowed down to about 4 on average.
The pathology report came back identified the cancer as Stage 3. It had penetrated to the submucosa but not beyond any of the walls. The colon itself looked clean from the outsides and the margins were clear. 31 lymph nodes were pulled and unfortunately, managed to get itself into 1 of them (resulting in the stage 3 diagnosis).
The oncologist went back and forth with whether or not we should proceed with adjuvant chemotherapy and we finally decided to go with it. We also received a second opinion from Sloane that agreed with this plan of attack. So, I'm currently finishing up round 3 of 12 on Folfox. It kind of sucks for a few days, but it has been mostly tolerable thus far.
In summary, I know a lot of people are against an aggressive plan like a total colectomy, but I've honestly found it to be pretty easy to deal with. I live around Chicago and have tested my new bowel with all sorts of "chicago" food and have not really had an adverse reaction. The biggest change is the more frequent bowel movements which aren't so bad! I never feel bloated!
I hope this story helps you and anyone else out there that is in a similar predicament. I'm happy to help and share any information I can.
P.