r/coloncancer

Hi all,

I posted about 10 days ago after receiving MRI and CT scans after a colonoscopy that found adenocarcinoma in my rectum. The scans indicated a stage II rectal cancer. Subsequently, the tumor board changed opinion and characterized the 2 suspicious spots that on the scans were deemed “unclear/unlikely” to be lymph nodes to now that they “may” be lymph nodes and bumped me up to T3bN1M0. Either way it doesn’t seem to have changed the approach to treatment.

My treatment plan right now is 4 rounds of CAPOX only with no radiation which I start this Friday Oct. 16th.

My oncologist is telling me it’s very likely that I will need surgery at the end of treatment to remove my rectum. It is apparently far enough to preserve the sphincter muscles and avoid a permanent colostomy. I asked whether it was possible that, if I had a full clinical response, I could do watch and wait to maybe have a chance at organ preservation. He said it was possible but there’s a 20% chance it could come back. 80% chance of organ preservation seems like good odds to me.

Some “positive” aspects appear that I am MRF clear, EMVI negative, and no sphincter involvement, and it is moderately differentiated which puts it more on the less aggressive side of cancers.

I’m only 32 and the idea of having LARS is really daunting to me which is why I’m really hoping for being eligible for watch and wait. I’d rather deal with scans for 5 years for the hope I can preserve my body then to do the surgery immediately and live thinking what if I waited. Of course I won’t have a choice anyways if I don’t have a full clinical response.

Does anyone have experience with watch and wait for this kind of cancer? Or any advice?

I’ll answer any questions people have.

Hi,

Mum was diagnosed with poorly differentiated adenocarcinoma T4a N2b back in May. Had the tumour removed and has now been on the CAPOX regimen since August. She’s coming up to her last oxaliplatin infusion on Wednesday and is taking the capecitabine twice daily 2500mg.

She is so unwell with it. I can’t find any other accounts of people being so poorly online. Even during her week break she is completely wiped out. Most days she can’t even get out of bed. The diarrhoea is severe, the nausea is out of control and she’s got no energy. Her memory is going too..

She’s been on every antiemetic you can think of and they somehow make her worse. The dexamethasone helps the nausea after the initial oxaliplatin but then they won’t prescribe her anymore for the rest of the chemo.

My family and I are so concerned, because she really can’t do anything. She’s house bound 90% of the time. They have already reduced her dose by 20% as her WBC’s and consistently low.

Has anyone else got experience of this? We are hoping she may feel better when there’s no more oxaliplatin. But I just wanted to know if it’s normal to be this unwell with this chemo? As most side effects seem to be more, neuropathy related (which she also has)

Many thanks :)

I am 34f I just had my first endoscopy and colonoscopy where they found a 2.5cm fungating and ulcerated malignant mass about 10cm from my anus. A bit of background - I did a 23&me test with the health option 5-6 years ago and it flagged some abnormal genes consistent with MUTYH-associated polyposis syndrome. I initially ignored it not realizing what it really meant. I finally told my PCP a few months ago and he referred me to a geneticist who was able to confirm the results through another round of testing. I was immediately referred to gastroenterology.

I had my first procedure yesterday (Friday 10/9) where they found the mass and 25 additional polyps. I've been referred to a colorectal surgeon, hemotology/oncology, and to get a CT with contrast to make sure it hasn't spread anywhere else.

My family has some trauma with cancer from my sister who passed from an unrelated cancer back in 2017 so this is bringing up a lot of emotions for everyone. I am trying to prepare for worst case scenario while also hoping for the best.

Any words of advice? Anybody else have experience with a mass like I described? I hate that I found out on a Friday and have to wait until next week to even start scheduling follow ups.

Do you anyone with stage 4 cancer of any kind get cured? Under all these circumstances we need to hear some good news and get some hope.

My hair is starting to come out now and I’m sad. I’m not ready to lose my hair yet. Also this month makes a year since I was told about the diagnosis and 1 year on chemo ( I am not okay). I have stage 4 with liver Mets. I could really use some encouraging words and stories

I have stage 3 colon cancer and just finished up week 5 of radiation / chemo and I am miserable today...my ass is killing me...I shit out broken glass all day and my but cheeks are feeling sunburnt like no other. My Dr says this is normal and does not offer much for the pain...I am using prep H w/ 5% and lots of Vaseline....is this normal / how long does this last??

....5 more treatments left, then chemo (folfox) for 4 months....

It's been a hell of a last 12 months. I was diagnosed on October 12th of 2025 with stage 3 colon cancer. Nothing seemed out of the norm, but I was just getting tired really quickly during workouts and hikes (I live in Colorado. Going hiking at least once a week is mandatory for citizenship here, I'm pretty sure).

Today I completed my 12th and final round of chemo. 1 year, 3 hospitalizations totalling 21 days, 3 ER trips, 12 chemo rounds, and 3 surgeries (resection, chest port, and one for a massive blood clot)

I have scans set up in 2 weeks to see how effective it was. I'm nervous about it and am trying to be an optimist. But for right now, no more spending every other Monday in a chair all day getting infusions. No more having to wear gloves to take something out of the fridge. Hopefully much less exhaustion.

My husband has his 1 yr colonoscopy in a week, the surgeon is the one doing it. But I was looking at stuff yesterday and his pathology indicates rectal vs colon. The lower edge was 15 cm from the anal verge, and things refer to it as both rectal and rectosigmoid. I mentioned this to him last night (surgery was in December 2025) and he got a deer in the headlights look because he's afraid it's suddenly worse.

He had a robotic R0 resection with anastomosis, his first surveillance CT at the end of July was NED and his CEA was 2.3. He completed 2 Capox cycles and 4 cycles of capecitabine-only (1/19 nodes), finished those at the end of May.

We're both antsy about the colonoscopy (even with good clear margins) and I think he just got more freaked out bc of the terminology. Is there anything I can say that will help him maybe feel better?

So my 70 year old husband had his routine colonoscopy and they found a tumor (2.1 cm) jist above his sphincter. His MRI and Cat came back clean and we were relieved to learn he would have a 1 hour outpatient surgery to remove it. We are now 2 weeks out from that and learned from the pathology report that while all margins were clear 1 deposit was found and the tumor was deeper than they had hoped. Because of this they are recommending followup chemo and radiation so I am trying to gather as much info as I can before our Monday appointment to discuss treatment options.

Treatment plan: Tumor board recommends Adjuvant Therapy beginning with systemic therapy first followed by radiation.

• Ca pox or Folfox x4 months to be determined by patient and provider followed by Long Course

chemoradiation 5040cGy x28 days.

So what I just typed is still a foreign language to me but I'm sure that will change. If given a choice, any recommendations? Side effects? Tolerance? Questions to ask on Monday?

Any info and shared experiences would be greatly appreciated at this point.

FYI my husband is in relatively good shape for his age. He is not currently on any medications, although he has slightly high triglycerides. He has some limited mobility after having 2 hip replacements in the last 12 years and spinal fusion prior to that but overall good health!

I'm 45, diagnosed at a routine colonoscopy on 9-19 with a large mass. Literally had no reason to get tested earlier as I felt nothing different. Got my pathology report confirming adenocarcinoma on 9-21. Got my CT scan done on 9-22, results on 9-24 that looked clean. Surgery consult on 10-5, with surgery scheduled for 10-14.

Before this it was crazy to me to think that you'd have to wait for a surgery to find out your stage of cancer, but I guess that's a good thing for me that the CT scan isn't calling me stage IV. The first week was rough especially with the colonoscopy being on a Saturday and having the whole weekend to deal with it. I had to push my Health organization as the phone representatives told me multiple times things were put in but weren't.

Also have an odd feeling right now where I'm looking forward to the surgery, that is just how much I want this thing out of me and find out how good or bad it is.

[supprimé]

I never expected to find myself writing this, but I wanted to share my story with people who understand.
My diagnosis came completely out of the blue.
It started with severe back pain. I initially saw my GP and was told it was musculoskeletal and was given naproxen. When things didn’t improve, I went to A&E and was sent home with antibiotics.
A week later I was still in an incredible amount of pain and returned to my GP. He was concerned by my blood results from the hospital and arranged for me to go back in by ambulance.
This time I was scanned.
On 25th July, I was diagnosed with Stage 4 colon cancer, which had spread to my uterus, liver and spine.
It was an absolutely devastating shock. I had never imagined that this was what was happening.
I’ve now started treatment at The Royal Marsden and was fortunate enough to get onto a clinical trial. I’ve had 5 sessions of FOLFOX so far and I’m starting to feel like I’m coming out of the other side of those first few rounds.
It’s certainly been a journey. The treatment has left me with a pretty horrendous scalp rash, with my head becoming very scabby and prone to bleeding.
I’m currently waiting for my CT results to find out how things are responding to treatment. That wait is definitely one of the hardest parts.
Just wanted to introduce myself, share my story and say hello to everyone here. ❤️

My husband was diagnosed with stage 3 colorectal cancer in 2023 and it later became stage 4 with metastasis to the lungs and local areas.

We have exhausted all treatment options and currently are waiting to meet with clinical trials. The doctor said the tumor in his pelvic (peritoneal cavity) is growing but not towards any immediate vital organs. So, he is unsure if he can predict survival time.

I keep hearing people saying that once things get bad then it gets bad very quickly and I'm afraid that I'm seeing that in my husband. His leg pain is worsening and he can barely walk.

My question is, when do you know that it's time? We want to be planful with our future.

I’m 29 years old, Just here to share my story so far and see if anyone has advice or a similar experience.

Nov2025-March2026: was having diarrhea once per day and went for a colonoscopy in March2026. They found a 3.5 cm sessile polyp in the ascending colon and sent me to get it removed in-hospital, which did not occur until August 2026. They assured me the polyp did not look malignant so it was ok to wait for my referred doctor to recover from an injury so he could perform the procedure.

August 2026: the polyp was removed, and pathology came back 2 weeks later showing grade 2 adenocarcinoma in about 25% of the cells. They think it was pT1, but the margins were positive so it might be pT2. Some high-risk features were noted (10 tumor buds, 1 small blood vessel invaded, mucinous features). Tumor was micro satellite stable

September 28: CT scan completed, no metastasis

October 1: right hemicolectomy completed and all lymph nodes removed from the area. Now I must wait a month for pathology results, and to see if I will need chemo. Surgeon thinks there is 20-30% chance that 1 node will have cancer in it, in which case chemo is necessary, but he’s hopeful for no nodal involvement.

I want so badly for them to send the current tumor sample for genetic testing so I can see what mutations it has, and try to imagine what my Long-term chances are if I do need chemo. I know tumors in the ascending colon often have mutations that make them more aggressive and resistant to chemo, and I just want to know right now which of those mutations I have, if any.

This waiting game is so awful. the month-long wait for my CT scan was completely excruciating and now I have another month-long wait to know my next steps.

If you got this far, thank you for reading and thanks for any advice or support you may have <3

Hi everyone. I was diagnosed with Stage IIIC MSI-H/dMMR rectal cancer in June 2026, with loss of MSH2/MSH6.
I had 2 cycles of FOLFIRINOX before switching to ipilimumab + nivolumab. I’ve completed 3 doses so far.
I’m looking to connect with others who have personally gone through immunotherapy for MSI-H/dMMR rectal cancer.
If you’ve been through something similar, please feel free to share your own experience what treatment was like for you, how you felt during and afterward, any side effects you experienced, and how your journey progressed.
Thank you to everyone who shares their story. 💜

I am a 52 f. I was diagnosed on December 31 2025 with colon cancer. Stage 3. I had emergency surgery due to my mass rupture and two perforations. Well the rupture happened because I was given opdivo and something else.
Woke with a colectomy. In the hospital for two weeks. When I got out my oncologist changed it to just opdivo. Now here we are in September October and I had my first CT scan and I have no cancer cells as we speak ! Yay! Me. But I will continue with the therapy to make sure I don’t have a relapse. I also will be getting my reversal soon. So please yall have faith. I didn’t but I’m hopefully “healed”.