Hi, just found out I have stage 3 rectal cancer

I am getting ready to have APR surgery. Can anyone please share their experience with the surgery?

I was stage 3b when I was told of my cancer. My first visit with the counselor at the cancer center was horrible. I had surgery but did not do chemo due to what that counselor told me. I did not do anything till i was told it had metastasized to my liver. I do have stable abdominal lymph nodes as well due to it going outside the colon. I had the first port installed and it was wrong and had to be removed and later a new one in. I was able to handle 4 rounds of 5fu and it’s cocktail until i had such a reaction to something that i thought i was going to die. I was put on Capc??? not sure of spelling but it was the pill. You have less the side effects on the pill and they say it works the same if your body breaks it down. Was on it for over a year and get scans and colonoscopies often. I go in for another this month due to stomach pain and issues. I’ve had sigmoid resection, liver resection and gall bladder out. No colostomy bag. Numbness in my stomach with muscle/abdominal wall separation but I am alive. It does get easier to go through life with it all. Stay positive. Also, on hair loss I was told by a hairdresser to wash my hair in cool water not cold or hot. To tolerate the cool try showering in luke warm water. Chemo will cause neuropathy and temperature sensitivity. Do not drink or eat cold food. Your throat will spasm and scare the crap out of you. You will be ok. Stay away from the sugar, even when the cancer center offers cookies or juice. Proteins and veggies. Nuts and grains like quinoa and such are not good for colon issues cuz it can cause diverticulitis if it gets caught in the areas that polyps and such have been removed. Stay on your care, advocate for yourself and get second opinions if needed. 2017 to present for me and still surviving. You can do this.

Are you having APR surgery?

I agree, go somewhere where they do a lot of those surgeries. I meet with 2 surgeons so far, I live on west coast of Florida so I'm thinking of Moffitt they do about 100 a month. I may also look into mayo. I have heard to go somewhere that does a high volume of these surgeries, don't go to the guy that does 2 a month

I've heard so many good things about Mayo Clinic. They have all good doctors there.

We traveled 2 1/2 hours to Mayo Clinic in Jacksonville. It was so worth the trip! The surgeon we met with was extremely compassionate and put my mind to rest. He’s done many APR surgeries which was what we needed to hear. I am waiting for a cancellation to have a MRI and then I will move forward with the surgery. My fecal incontinence is so severe that I am welcoming a colostomy. I know there will be a period of adjustment, but I am ready. Please share your experience with APR surgery. I can use any and all advice.

It would really be awesome to have a outcome like that, I started the radiation with the chemo pills, then I will have the 6 sessions of chemo, I got a port installed.

From what I hear only a small percentage of people have a outcome like you. Good luck. I also ride road bikes. I really hope I can ride after all this

It is starting to catch up with me, pain in that area and I also have almost fainted twice during strenuous activity

I had 4th stage and survived although I have an artificial sphincter plus I wear a Hollister pouching system, not a problem once you get used to it. They have many advantages to take a BM you don’t have to rush to find a place and so on.
It’s all in that important over looked word in life “acceptance”.
Just think about it.
I’m cancer free for about 15 years now.
Hope this helps.

I can relate to you because I have been through the same thing. I was diagnosed with rectal/anal cancer (I think that's stage 4?) with a 6 cm tumor in September 2022. I started treatment in October 2022. I had a total of 12 sessions of chemo which occurred every 2 weeks. I had a port surgically installed in my chest for the chemo. Each session was about 4 hrs and I would then go home with a chemo pump which would be removed 2 days later.

After my 8th session, they stopped the chemo through the port and I had 6 weeks of radiation which took place every day. During the radiation period I took chemo pills every day. During my treatment I had MRI and CT scans which showed that the tumor was shrinking.

I then completed my last 4 sessions of chemo and then had a colonoscopy. The surgeon said he could find no sign of the cancer. I have to get checked again this month and am praying for the same result. My energy levels are just about back to normal, but I am suffering pain from, what I think, is the damage from the radiation. Just the same, I am back to enjoying life and even managed to get back on my mountain bike for short rides.... yes, sitting is a bit painful so lots of peddling out of the saddle 🙂

I hope that gives you some encouragement that you can defeat this thing. It's a fairly tough journey but most definitely doable. I wish you the very best outcome.