Proctectomy/APR advice

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inspired2013
Posts: 1
Joined: Wed Jul 08, 2020 6:43 pm

Proctectomy/APR advice

Postby inspired2013 » Fri Jul 09, 2021 5:30 pm

Hi all! I’m new here and looking for some advice. I was diagnosed three years ago stage iv colon cancer with a single liver met. I had surgery to remove both the original tumor and the met, followed by 12 rounds of FOLFOX. We also discovered I have Lynch (MLH1). Surgery left me with a relatively well managed colostomy. I’ve been NED since that surgery.

In August 2019, I opted to have surgery to remove my remaining colon, gallbladder, uterus, tubes & ovaries. Long story, but they accidentally left behind part of my right ovary. I had surgery this January to remove that ovarian fragment, only they couldn’t find it despite many scans & ultrasounds :roll: . They also nicked my small intestine & that led to a variety of issues. During all that, my rectal stump has decided to be angry it’s no longer being used and I developed diversion proctitis. We managed to calm things down with a high dose of flagyl & mesalamine suppositories. However, it’s back now already. My surgeon and I have started talking about removing my rectum & anus but we’d like to push that off at least a year, preferably more. However, I do nothing the easy way or the textbook way so I’m starting my own research into the surgery now.

I’m hoping those who have had that surgery can tell me their experiences, both good and bad. What questions should I be asking? What do you wish you’d asked at the time?

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Proctectomy/APR advice

Postby beach sunrise » Sat Jul 10, 2021 12:26 pm

For APR I would make sure they are board certified.
Get the surgeon to tell you how many of these operations he has done successfully and record the discussion. And ask the nurses about the surgeons record too.
I would also have a plastic surgeon involved.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


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