Diagnosised yesterday with colorectal cancer, what can I expect?

Posted by smitty333 @smitty333, Mar 7 7:37am

Colonoscopy identified mass in colon, pet scan next week, surgery on March 25th. Was just looking for help in what to expect in the coming months.
Thanks everyone.

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Hi, @smitty333. Sorry to hear of your diagnosis. It differs from mine and my surgery nearly 3 months ago. Is your tumor/stricture near the end of your colon where the rectum resides? In contrast, mine was at the top of the colon on my left side (where it turned down near my spleen) plus a tumor in my appendix (at the other end of my colon where it begins on the bottom right side of my abdomen). Thus most of my colon was removed, leaving my small intestines to dominate what's left to digest food and extract nourishment from it. Given the differences between our treatments, I suspect my recovery was unique to my special symptoms after surgery. For that reason, my postsurgical experiences may not be useful to you. Better information is available from your medical team, which undoubtedly has dealt with many colorectal surgeries that equipped them to help you understand what lies ahead in detail. If you and your medical team think my experiences can be helpful to your treatment and recovery, I'll be glad to respond to any questions you have for me. Martin

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I had the surgery and was in the hospital for 7 days. I wasn’t in a lot of pain until they make you walk it hurt a bit. You are going to do fine. One thing I wish I did was chemo afterwards because mine has come back twice it went to my liver and my lung.

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Has the mass been cancer proven by biopsy?
My surgeon performed a colectomy removing and resectioning the ascending colon and illium and part of small intestine 2 wks ago. I have gone hiking at superstition mountain, walked mesa market, walked in neighborhood daily., including sinful walks to the ice cream parlor! Feel great! Let me not forget though that the whole "idea" of the surgery was scary-er than reality! Hardly any pain except to get in and out of bed, mostly just tired and weak from major surgery. Hospital and surgeon made sure any pain was controlled, in hospital and home. I was very fortunate-blessed that the lymph nodes they removed were clear of cancer cells. With all this said, I am a pretty healthy 68 yr old, I had an awesome, kind, skilled robotic surgeon, and there were no complications, but others may not had as good an experience as I did, and my tumor was a small NET, caught early!

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@sunshine9472

I had the surgery and was in the hospital for 7 days. I wasn’t in a lot of pain until they make you walk it hurt a bit. You are going to do fine. One thing I wish I did was chemo afterwards because mine has come back twice it went to my liver and my lung.

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Sorry to hear that. Could you comment on the decision to wait on chemo? What factors led to that decision? I've just had the colon resection and will need to determine next steps. Thank you!

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make sure you understand WHAT is going to happen Don't be a sheep & jump when ever they say to. ANd just because you are positive get a 2 or 3 opinion A surgeon always wants to do surgery Thays what they always want to do Stand up for yourself & say whoa wait a minute lets take it a step at a time. Sounds like they just want to push you then. SAY NO I just got done cancelling a bunch of appointments as I said what are these for NO answer from person on the other end My information no education not coming for that appointment. We need education to make correct decisions as to what they can or cannot do Its your body STOP and back off understand what is going on Yes they want to do stuff for you but don't just push me thru the system. And don't worship a doctor they put their pants on just like you do Once they do a surgery & remove stuff you cannot put it back in. So have them back off & get questions answered If they do not like it too bad

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It’s a little bit like Toad’s wild ride I would say

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I had colon cancer in 2007. Seven inches of my colon was removed and twenty lymph nodes. My advise would be to try not to over tire yourself. I had pneumonia three times in the first year after the surgery.

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Hey Smitty,
I’ve learned that colorectal cancer is usually rectal cancer, and where the tumor is is the most important thing.
I had a tumor found at my first Colonoscopy, and it was stage 3, large and low, but high enough to have a lower anterior resection. There were also 16 cancerous lymph nodes removed.
Do you know what stage yours is? And have they discussed any possibility of a temporary ileostomy?
I have one for 6 months after I finished chemotherapy, and I had the reversal surgery September 25.
Let me know if you have any questions? Stay positive!😘

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My colon cancer experience - yours will vary. Suspicions were raised by a Cologuard test, followed by colonoscopy which found a large mass, biopsies taken found the be malignant. Had minimally-invasive robotic-assisted surgery - took the entire colon and 108 surrounding lymph nodes of which a dozen were malignant. Surgeons connected my small intestine to the rectum. Surgery was fairly easy, stayed in hospital several days and released once the bowel worked. Recovery was quick.

Post surgery, I had self-administered injections of a blood thinner (Heparin) for 3 weeks to prevent blood clots - you get to practice giving them in the hospital. This will mess up your bowel habits for a while. You probably will get dietary recommendations. Depending on how much colon they take out, you may need to frequent the toilet more often. The more colon is removed, the less water is removed by what's left of the colon and the runnier the stool. a fiber slurry may be suggested not to loosen the stool but to tighten them. I found sugary drinks and some heavier cooking oils to be problematic.

While the surgeons were certain "they got it all", the oncology folks recommended FOLFOX6 chemo. In my case, I had about a dozen suspicious, but unidentifiable things from thyroid nodules, to spots on the lungs and the more common liver and kidney cysts. Ideally, chemo is 12 cycles, one every other week - done outpatient. I've posted the details in this group in other discussions before. I'll wait and see if you do chemo before posting more. Don't want to overwhelm you if not necessary.

You will most likely have regular surveillance scans and blood work post surgery - chemo or not, they start at 3 month intervals, then move to 6 month and then a year if cancer does not return.

I'm now 3 years post-surgery and ~ 26 months post-chemo and am cancer-free, doing scans and blood work every 6 months - only goofy thing remaining is low platelets about 65% below the lower limit - not a big problem but something they're watching.

Hope this helps. You can beat this.

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Hi Smitty,
A lot depends on where your colon tumor is located. Mine was about 1/2 above the cecum (where the small intestines join the large intestines). Mine was also discovered during my first screening colonoscopy. At first, I was shocked when they told me they would have to remove half of my colon (right hemi-colectomy). However, my colo-rectal surgeon explained that there are too many blood vessels and nerves to reattach--it is much easier and safer to remove the right half--my research proved him to be correct. I was lucky that mine was stage one and low grade. Zero out of 20 lymph nodes were negative, so no chemo or radiation. Surgery and recovery went smoothly, no pain, just some soreness. I was in the hospital for 6 days, but back to work a week after returning home. That was in 2016 (I was 61). If it were not for the small 2 inch scar around my navel, would not know I had surgery or was missing half my colon. A normal bowel movement once a day. I still see the surgeon once a year and will have a colonoscopy every 3 years for the rest of my life, but no reoccurrence so far! Hope you far as well as I did--good luck.

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