Stage 3 colon cancer: What's your experience?

I was diagnosed with stage 3 colorectal cancer in June 2022. My tumor was quite large, 12 cm, so the surgeon wanted me to do light chemo and radiation first. Radiation 5 days a week and chemo pill daily for five weeks. No bad side affects to speak of. I was exhausted the week following my last radiation. Waited a month, had surgery, loop ileostomy… and now I’m in round 7 of 12 of Folflox. I’m doing okay, the last round I started really feeling it. Super tired mostly. Overall, it’s not bad, I almost feel guilty that my body seems to handle it better than some. I will admit though, I feel it more each round, but still not what I thought it would be. I’ve not had nausea or hair loss, but others that I have in treatment with have occasional nausea and mild hair loss. The most significant side affect has been exhaustion. It’s manageable though. There is a guy that has my same treatment day and he originally had colorectal cancer, his treatment was different from mine, he had oral chemo and radiation, then surgery, but no chemo after. He was good for two years and on one of his 6-month checkups, they found a spot on his lung. That really scared me. I was trying to do 8 rounds, not 12, but hearing his story changed my mind. I’ll gladly take the 12 rounds the surgeon and oncologist recommended. I don’t want a reoccurrence. My surgeon was more adamant than the oncologist, he clearly sees a high reoccurrence rate, even though it usually appears in other organs. Either way, the guy in treatment was my reason for doing the 12 rounds.

I was diagnosed with stage 3 colorectal cancer in June 2022. My tumor was quite large, 12 cm, so the surgeon wanted me to do light chemo and radiation first. Radiation 5 days a week and chemo pill daily for five weeks. No bad side affects to speak of. I was exhausted the week following my last radiation. Waited a month, had surgery, loop ileostomy… and now I’m in round 7 of 12 of Folflox. I’m doing okay, the last round I started really feeling it. Super tired mostly. Overall, it’s not bad, I almost feel guilty that my body seems to handle it better than some. I will admit though, I feel it more each round, but still not what I thought it would be. I’ve not had nausea or hair loss, but others that I have in treatment with have occasional nausea and mild hair loss. The most significant side affect has been exhaustion. It’s manageable though.

Thank you Colleen! I have been tempted to ask, but don't know how to ask or start another thread. What experiences people have had with oncologists and surgeons giving totally differing diagnoses? Does this happen regularly, e.g. NO, if continues to shrink don't see why surgery needed, versus YES, it will still be required. Does it mean that they just aren't communicating, or is it a differing philosophy of sciences. I mean I DO feel they are both very great at their jobs and experiences, but it kinda has driven me crazy. Actually, from the start! (Not first time.) I try to read between the lines and have patience, but wonder if am going nuts with my understanding of what each one said... and am pretty darn practical and non-judmental. Thoughts? Worthy of discussion? And/or????

p.s. regarding Keytruda after the 3rd treatment. I DID get briefly nauseous 2 days later and threw up just a tiny bit. Nothing else except a vague "spaciness" at times. I imagine accumulative effects can do this as time goes on. Will see.

Great news, @not2ruthless. I hope your appointment with the oncologist went well last week.

How is ur husband doing, meaning on day ago Feb 8th 2023? I was told a 6cm mass mid rectum March 4th 2022. I was 58, Duke MRI said a lymph node area was lighting up and it was stage 3… Atrium Health in Charlotte NC put me through a 6 week course Late May/June of radiation and Chemo.. today no mass, no cancer, no ulcer at the spot of treatment and No surgery. I follow up every 6 month with my Doctor Davis and hope my body and lifestyle keeps any cancer from gaining any beach head in my body ever again. Very active Before cancer and love playing pickleball now after this battle victory. I put on weight during chemo and did not throw up, just a FYI. Wish u slam the best. Doctor did say I was in the 20% or less who gets this outcome. Dane

Hello and thanks! I have had two Keytruda only treatments thus far and another one this Friday. They are scheduled for every three weeks. The only side effects for me right now seem to be .... very dry and irritated skin (maybe a rash on face, but dermatologist does not think that is due to treatments) and at times maybe a little lack of energy. I DO have to add tho, that these both could also be attributed to winter time and lack of general physical stamina since was so inert for awhile with the tumor spasms!

The good news is, the tumor pain is totally gone, and the surgeon can tell that's it's already shrinking!! He also said that it had been observed that these can almost shrink down to a "scar" type of thing. (p.s. my colon cancer type is MMR BRAF Mutation (acquired mismatched) He said another surgery would be required even so, and because of its location -- being so close to abdominal sides (and they had found during the initial surgery that there was no "fatty" issue to cut around....it could still be a rough one.) This is concerning to me, because they won't know until get in there again with those laparascopic Edward scissor hands!!!

I will be getting the Oncologist take this Friday on possible time lines, initially they had said treatments for 4-6 months, but surgeon felt this might not take that long. I am thinking also, about getting a second opinion before what could be a major surgery (if they have to rebuild abdominal walls, etc.)

But I am sure happy to report that for ME, I have not found either the treatments NOR any effects that are that worrisome. Am aware this can change as treatments continue, but having no tumor pain has been a huge huge blessing in the meantime!!

Thanks for asking, and will keep everyone updated!

Welcome, @not2ruthless. I moved your message to this existing discussion:
- Stage 3 colon cancer: What's your experience? https://connect.mayoclinic.org/discussion/stage-3-colon-cancer-diagnosed-yesterday/

I did this to help connect you easily with other colon cancer members like @maya8238 @paul28 @lisag03 @martin77 @kitty2 @chrisjenn8287.

I'd also like to bring in @mercator @cnso and @bea1972, who have had immunotherapy for colon cancer. Here's a related discussion on that topic.
- Immunotherapy - Keytruda for colorectal cancer https://connect.mayoclinic.org/discussion/immunotherapy-keytryda/

Not2ruthless, when do you have your next followup to check how treatment is working? How are you doing?

I’m sorry to hear that. It’s such a shock and the unknown is the worst. Your husbands sounds just like my case in terms of size and location. I did not get any chemo before surgery and I wasn’t given a stage until after surgery. All I knew was it wasn’t stage 4 after seeing clear scans. We were hopeful it was stage 1 and the oncologist kept stressing to us that the size doesn’t indicate stage. Unfortunately in my case it was found in lymph nodes after surgery making it a stage 3. I started chemo about a month after surgery. It’s not the best but I’m managing it ok. Mostly tired and some neurological symptoms. For now just focus on the scan. If that’s clear then it’s a huge weight off your shoulders. Stage 1 2 and 3 colon cancers are treatable. Stage 4 would be much more if a challenge but these days they can prolong life and really do a lot. Keep us posted on the scan results.

My husband found out yesterday he has a >50mm Malignant mass in the rectum 8cm from the anal verge. His CT is scheduled for this Thursday. He is 40 years old. We don’t know what stage he’s at. We’re hoping for stage 1. He had the same symptoms as you. His blood tests also all came back normal giving us hope, but now I’m not so sure.
Did you have to do radiation and “lite chemo” before your surgery?
How is your chemo going so far?

I think that we all need some positive influence at times of our greatest challenges.
Fear can be debilitating.
I find that life is easier to live when fear or being afraid is not part of your DNA.
Kitty, thank you for your wisdom and kind thoughts !
I wish you health and happiness always !
Paul