r/coloncancer

My (24m) mom (51f) is currently on palliative care… or she about to be… at the moment she’s hospitalized due to feel very ill… got diagnosed back in 2024 at few months shy of her 49th bday for stage iv colon cancer… after more than a year of going back and forth to the hospital for feeling unwell and being sent home everytime…

Any hope or should I get back to reality? I feel completed depleted… lacking all the will at the moment

So heartbroken right now. Just wanted to give an update. :(

Anyone else going/went through something similar?

We had our first oncology appointment. It did not go well. It was basically a pointless appointment. She told us that the original operation note from the exploratory lap does say specifically where the biopsies were taken. My mom’s CT showed an omental lesion, the exploratory lap did show some omental lesions but didn’t describe how many. So the oncologist started off the appointment telling us that if it has spread to the omentum then she will be on chemo for the rest of her life every two weeks. She said that it would not be considered curable but treatable. She ordered a PET scan and referred my mom to a surgical oncologist and GI oncologist in Atlanta at Emory. The oncologist really made us feel terrible. She also referred my mom to have a port placed. We are just so upset and distraught right now.

Hi, my mom was diagnosed with stage IV rectal cancer in March 2025 with liver, lymph node, and later bone metastases. She completed 6 months of FOLFOX, had surgery to remove her primary tumor in October 2025, then unfortunately developed more liver metastases and a bone metastasis in January 2026. She was treated with FOLFIRI, later added Avastin, and received SBRT to the bone lesion.

Her latest PET/CT shows both liver tumors have continued to shrink (1.4 × 1.2 cm → 1.1 × 0.8 cm and 1.3 × 0.9 cm → 0.9 × 0.6 cm), no PET-active disease, no active lymph nodes, and the bone metastasis remains inactive. Her CEA is now normal and Signatera is negative.

At this point, should we push for liver-directed treatment (ablation/surgery/etc) or a treatment break with close surveillance? Has anyone been in a similar situation, and what did your team recommend? Posting here because it seems like I'm experiencing an error on Colontown and can't post anything...

Stage IV cancer in sigmoid colon with liver mets.

So i went for the liver bippsy, stayed in the hospital with a collapsed lung. They put the tube right through my tittie and i'm so sad. I'm home now and can't seem to get a grip. I'm falling apart. I don't think one ativan per day is quite enough and none of my doctors are returning my calls. No drinking. No exercise. No picking anything up. Can't even go downstairs to wash my laundry. What am i supposed to do? At least my tumor quieted down while i wasn't eating. So there's that.

Not that i know what it means, mri report came in:

Annular mucosal based mass involving the superior and right lateral wall of the rectum

MR-T T1/2 tumor confined to rectal wall

MR-N N1 involves 1-3 lymph nodes

No sphincter involvement

No suspicious extra mesorectal lymph nodes

EMVI no

I'm about to start round 8 of chemo. Cetuximab, Folfox, Folfiri. Anyone have to deal with terrible rashes on face, chest and scalp (scalp is the most annoying and I can't stop picking at it).

Also, I get crazy cracks on my fingers. I have liquid glue and the utterly smooth lotion that helps some, but it still is super annoying.

Whether you're on the range regimen or not, anything else that you might suggest to help out?

41 M, dx with stage 2 right-sided colorectal cancer in the beginning of May 2026. Could be stage 3, hard to know without surgery, but we at least know it's local. I also have ulcerative colitis (UC). Here is my situation...

My cancer is dMMR/MSI-H (MLH1). The surgery team said they can't just do a resection because the reconnection may leak due to active colitis, so instead they must do a total colectomy (total colon removal) and ileostomy. Bowel biopsies from all other parts of my colon show no cancer, it's just at that right-sided spot. I think a total colectomy is drastic.

First oncologist I spoke to completely rejected the idea of neoadjuvant immunotherapy (IO) because it's "an absolute contraindication if you already have colitis." This is because colitis itself is a possible side effect of IO. However, she was unwilling to think creatively at all about how to maybe control the colitis so I could at least try IO. My right to try was rejected.

Second oncologist I spoke to was willing to do IO if I got on a biologic for UC that specifically suppresses a UC pathway in the bowel, but would have no effect on IO. He said a lot of IO patients use this biologic if the IO causes colitis. My UC is not currently severe. It's moderate in the rectum and mild in the rest of the bowel. Over time it continues to downgrade. Before my diagnosis, I was actually coming off prednisone because the flare was ending... but the hospital interventions made it all flare up again (IV antibiotics, colonoscopy, etc).

If they could offer me a resection, I would get that tomorrow... but I have decided to reject a total colectomy given that the cancer is MSI-H. I feel I should at least try IO to maybe save my bowel.

Here is the catch...

It took weeks to get approval for the biologic (Entyvio). I just got the first dose. Those few weeks were lost time. The loading doses for the biologic are week 0, 2 and 6. My UC has to get under control within that time for IO to be attempted. All the while, the cancer could be progressing. I am getting another CT scan (with two forms of contrast) on Monday to assess if there is progression. If there is no real progression, I will better about what I'm doing. If there is progression, then maybe I should just get surgery, I dunno. I was lucky to catch the cancer when it was still a local tumor... and this was because it was causing acute pain. Otherwise I would've had no idea.

I'm just wondering if anyone here has experience dealing with colorectal cancer through neoadjuvant therapy alone, especially MSI-H? I think if I didn't have the MSI-H mutation, I would just let them take my bowel. Furthermore, if IO doesn't eliminate the tumor but only shrinks it, I'll still be stuck with the same surgery options.

Could I please get some perspective? I know what I'm doing is not standard of care but my current medical team says it's an okay strategy. They just think it's sad that no surgeon would be willing to do just a resection.

My 92 year old elderly mother had a CT colonoscopy a couple of weeks ago. We were informed two days later she had a thickening in the bowel by her consultant who would arrange a colonoscopy to investigate further.

We then called into the hospital late last week - we weren't told in advance who we were seeing - and were informed she had a cancerous lesion/growth which could cause a blockage in her bowel if not removed - the timescales on that happening are unclear. It appears to be localised and hasn't spread.

We have been asked to decide early this week if my mother should have a right hemicolectomy to remove this - but have been informed there is an up to 15-20% chance the op might not be successful. But on the other hand if she doesn't there is a risk the growth could lead to a bowel obstruction and an emergency hospital visit/and operation which would be more traumatic and risky.

My mother is mobile with a walking stick and currently looks after herself at home but has the usual comorbidity issues for someone her age including high blood pressure and heart disease - so the operation is risky.

We really don't know what decision to make for the best - palliative care/support at home or a major operation that might succeed or might cause complications that end her life earlier.

I accept this forum can't offer medical advice but we are really struggling to decide what is best for her.  So would welcome any thoughts/experiences people might have.

Thank you!

Hi, I posted on this subreddit regarding starting chemotherapy, and now that I’m on it, I don’t know if I can last 6 months of treatment.

I’m 19M and was diagnosed a month ago with stage 3 (3C)colon cancer with 10 positive lymph nodes out of 33. I already had surgery to remove a part of the right colon which I’ve recovered from and am now doing chemotherapy (CAPOX). I had my first infusion 2 weeks ago, and man did it suck after a few days. felt nauseous, though the pre med they gave before the infusion helped alot. It left me fatigued, no matter how much sleep I got, I was tired. Though after a week, most of these issues were gone.

However, the only problem im having is swallowing the oral chemo pills. Just last week I was having no troubles taking swallowing pills, but as of today and yesterday , I’m struggling and having major troubles taking the capecitabine. I take 5 pills ( 3 150mg & 2 500mg). It started yesterday morning after eating my breakfast, I went to go take the pills with water like the usual way I do it all the time, but this time the pills just stayed in my mouth while I was swallowing all the water. After attempting a little more, I was finally able to swallow all my pills. Fast forward to the evening dose, I had more troubles swallowing it. I even missed one pill because I was gagging on it while trying to swallow and spat it out into the trash can. Fast forward to this morning, I tried taking it down with water first, but this time none of the pills I could swallow, eventually the smaller pills went down, but not the bigger pills. I tried taking it with yogurt but I just end up eating the yogurt and leaving the pill in my mouth. Eventually, after a while of trying to swallow it, I somehow ended up being able to swallow one big pill but spat out the other. I’m doing everything in my power to take these pills, but my body is just rejecting it and it’s annoying and irritating, and pissing me off badly.

If I’m being so honest, this whole chemo process makes me not want to deal with it for the next 6 months of my life. These pills make me not want to deal with the 6 month process of chemo. The thought of being diagnosed with cancer at 19 is miserable and the treatment phase is not making it any better. It literally flipped my life completely and now I’m just so lost in life. I just completed my freshman year of college and am about to do my 2nd year, which i don’t even know if I can handle while being treatment.

I have all the support I can ask for from my family and a few friends, but I still just feel so down and sad. To be honest, I don’t have much friends either that I can openly talk about my cancer to and im just stuck at home playing video games alone the whole day to cope with my diagnosis. It’s worth a while though since playing video games is my only way of making myself feel a little happier.

That being said, thank you to everyone who reads this, and if you have any advice for me, I’d appreciate it so much ❤️

Hi! 1 year ago I was diagnosted with the stage 2 sigmoid cancer. My cancer is hereditary one. I got it from my father bloodline. My father and my grandfather both died at 35 due to the stomach cancer. I found my cancer at 35 as well. My great grandmother died young too, but I don't what type of cancer she had.

The mutation we have is well-known the founder mutation. So I assume there are many of my ancestors died from cancer.

It was confirmed I have a Lynch Syndrome and MSH2 mutation. If anyone else has this mutation, it would nice to talk to someone like me.

That’s it.

She got diagnosed with a stage 4 right side colon cancer, a type that Seems to be very aggressive (HER2+). I a couple o months went from barely any sympton to almost dead.

This is her second round of FOLFOX (every two weeks). She is getting also cetuximab weekly.

If (when?) The dissease progresses, we are aiming for anti her2 treatment (tukysa or enhertu)

Right after first infussion (only folfox, no cetuximab) she recovered extremely well and extremely fast in about 2 days. She is now able to have a near normal life without symptons. she even went to gym back again today.

I wonder what to expect in terms of goals. Her mets are very spread but only “a few” in each site except for lungs where she has the most.

Wondering if its possible for a stage iv so spread to reduce the tumor until she can live for 5+ years.

My mum (84yrs) had bowel cancer about 20 years ago, she had the tumour removed, bowel resection, a stoma for a year which was then removed. What is becoming more and more common is a complete loss of control of her bowels. At least once a week she has diarrhoea with no warning. Whilst this has always been something she has been living with, in the last 5 years it is becoming more regular and therefore quite restrictive. She has been checked again by the consultant as few times, no issues at all. Is this something she now has to live with? Its hard to narrow down what triggers it too, but probably worse if she has eaten out, however it is also very unpredictable. Thank you

This community has been such an incredible source of support over the last few months, so thank you.
When I was first diagnosed, my tumours were considered too large to remove. Thankfully, after treatment, I'm now scheduled for surgery next week.
Everyone around me is excited, and I am too...but I'm also terrified. I have a 4-year-old at home, and I know he'll struggle while I'm in the hospital, but I think it's more than that. The thought of being put to sleep for major surgery has me feeling incredibly vulnerable, and I've been much more emotional than I expected.
For those who've been through this, did you feel the same way? Any advice for getting through the days leading up to surgery would really mean a lot.

Hi everyone, I’m going in for a bowel resection & having a stoma fitted in 2 weeks, will most likely be in hospital for a week, getting all my stuff together I want to take with me but I wanna ask anyone else who has spent a period of time as an inpatient, what is the thing that you wish you’d taken to the hospital with you but you didn’t, can be anything, something that would have been helpful with recovery, entertainment etc, trying to cover all bases 😂 thanks for any help

I had my first CT scan 2 weeks ago, I’ve been so stressed waiting on the result that I thought would be explained to me in detail like the original diagnosis CT result.

Had an oncology review appointment yesterday and was expecting it to be with the main consultant but instead it was someone on her team, we went through the normal review stuff before my next chemo on Tuesday and then she glossed over the scan and said it showed a partial response and then moved on… I asked her exactly what that meant, she pulled up the report and started reading through it and cherry picked a couple of numbers that were kind of meaningless in the bigger picture, didn’t mention my lungs mets just 1 from the liver and a number from the primary that didn’t match what I was originally told. We asked her to clarify this and she said she would look into it and call me after 5pm yesterday. She didn’t.

Then she said they were going to reduce the fol part of the folfox but didn’t explain why and gave me a prescription for steroid mouthwash for my chemo mouth, I’m not allowed steroids at all after I developed steroid induced diabetes so I questioned this and she told me to just use the glucose monitor and keep an eye on my levels, I’ve decided I’d rather live with the couple of days of misery than risk it.

I don’t know if I’m just overly sensitive and letting things get to me but while this is her job and something she does day in, day out, this is my whole life… I need the facts and figures, I need to know if this is going in the right direction as they’d expect, giving me 1 number doesn’t help me not panic that there may be new lesions or others growing. 2 weeks of sleepless nights will probably now extend to 4 weeks before my next review as they are impossible to get hold of and there’s always the chance I end up with an appointment with the same specialist.

I’m in the uk and under the nhs, can I ask for copies of the CT results so I could atleast find some answers myself? I don’t particularly want to read them but don’t feel like I can ask the questions anywhere else or is this just a normal thing that is routine and they would tell me if it was bad?

I think I just needed to rant and get this out more than anything, I felt so dismissed and unimportant yesterday and have wasted so much time sitting by the phone waiting for it to ring but don’t know
If I’m just hitting a point where I’m overly sensitive

I finished 6 rounds of FOLFOX last November. My first CT scan in January was clear thankfully. Last week, I had my first post-chemo colonoscopy. No polyps or masses were found through some foreign object was taken out and sent to pathology. I was told 2-4 weeks for results. A couple days ago, I had a follow up CT scan and have no idea when I’ll get results. I’m trying to manage anxiety while waiting, but it’s hard. My mind keeps going to the worse case scenario. What has helped you deal with the wait time for test results?

I'm a 73-year-old male, diabetic. My family is helping me post this. Looking for any perspective, especially from oncologists, radiologists, or anyone who's been through something similar.

Here’s the timeline:

July 2025 - CT showed a large sigmoid colon mass (roughly 7 cm) protruding from the right lateral wall of my sigmoid colon. A few suspicious lymph nodes along the sigmoid mesocolon (6-8 mm). A 7 mm lung nodule in my right lower lobe was flagged as concerning for metastatic malignancy but said could also be unrelated. A secondary 2-3 mm nodule was also partially visualized.

October 2025 - I had gone down from 170 lbs to 130 in less than a year and it wasn’t looking good. I had what they called palliative surgery (I wasn’t doing chemo or radiation at this time). Robotic-assisted low anterior resection with colostomy (Hartmann's procedure). The goal was to relieve a near-obstruction so I could eat again. During surgery, my surgeon found an abscess cavity with pus at the tumor site and noted the rectosigmoid region was tightly adhered. He made a small incision in the retroperitoneum to facilitate removal. He debulked my pelvis and removed as much viable tumor as possible, then cauterized the lateral sidewalls. A lot of this I’m taking directly out of records so apologies if it’s confusing

Pathology came back as moderately differentiated adenocarcinoma, 16.5 cm. Staging pT4a, pN0. Some other notes:

- Radial (circumferential) margin: positive — cancer at the cut edge

- Macroscopic tumor perforation through visceral peritoneum

- Lymphovascular invasion: present

- Venous (large vessel) invasion: present

- Perineural invasion: present

- Tumor budding: intermediate

- 20 lymph nodes removed, all negative (0/20)

- Pathologist noted findings highly suspicious for in-transit metastasis near a peritumoral lymph node but did not meet criteria for upstaged nodal status

- MSI tested on a prior outside biopsy: no loss of expression (microsatellite stable)

- KRAS, BRAF, HER2, NRAS status: unknown / not tested to my knowledge

I did not go with adjuvant chemotherapy or radiation at this time either.

November 2025 – April 2026 — I recovered well, and got to enjoy eating again. Like I said, I had been down to about 130 lbs because of the obstruction and got back up to just under 170. My CEA dropped from 9 to 2 (last checked March 2026). I felt significantly better. No imaging was done during this period and I was able to be myself more or less.

May 2026 — I was hospitalized with fever, originally I’d experienced constipation so my family took me down due to the high fever with that. Blood test came back positive for E. coli but they never found the source. CT without contrast found a moderate-sized RIGHT retroperitoneal hematoma (referenced as 7.6 x 6.4 cm on my next scan), appearing to extend from my psoas muscle, causing hydronephrosis and hydroureter on the right side. They placed a ureteral stent to relieve what they said was apparent pressure on kidney (I think). The mass itself was not sampled or biopsied. The CT showed NO enlarged lymph nodes anywhere. My right lower lobe lung nodule had grown to 11 x 9 mm (from 7 mm in July 2025).

In between this time and June I underwent infusions of antibiotics, and also had the stent in. It was pretty painful, and it was really difficult to sleep. Stent was made of some sort of plastic, which I mention because I’ve had a doctor tell me I’m sensitive to that in the past, not an allergy but something similar where my body reacts.

June 2026 - Follow-up CT without contrast ahead of stent removal (or so I hoped). The mass grew to 10.6 x 8.6 cm (from 7.6 x 6.4 - what they said was significant increase in about 6 weeks). The radiologist changed their language from "hematoma" to "hematoma versus mass." It's described as lobulated and blending into my right iliopsoas muscle. NEW bilateral enlarged lymph nodes are now present — right iliac chain (11x9 mm), left iliac chain (up to 14 mm), right femoral (up to 8 mm). None of these were on the May scan. The report was flagged with a NOTIFY addendum. My lung nodule was not fully covered on this exam. Stent is in place, hydronephrosis has resolved be per doctor.

Follow up visit with urologist - June 2026 - He could feel the mass by pressing on my lower right abdomen. He believes it is colon cancer, not a hematoma. He told me he thinks it is not curable and the long-term prognosis is probably not good. He said several times that he is not an oncologist. He gave me two options: continue what I've been doing, or see an oncologist and have a biopsy. I told him I will likely pursue biopsy so I have that coming up to schedule.

How I'm feeling now:

- My weight has dropped from 170 to about 153 since May - going down again

- I have pain in my right back and right front

- I keep getting low-grade fevers - often will be higher at night

- My white blood cell count may be elevated (not confirmed in a report that I have access to but I thought they said that)

- I have my colostomy and ureteral stent in place still

What my family and I are confused about:

- I improved dramatically for 6 months after a palliative surgery with known residual disease and multiple high-risk features. If cancer was actively growing, why did I recover so much? Or maybe that’s tupical after tumor removal?

- The mass nearly doubled in volume in 6 weeks and bilateral lymph nodes appeared from nothing in the same timeframe. That seems very fast.

- My CEA was “normal” as of March 2026 or back down anyway. but again maybe normal after removal of tumor?

- My original tumor was on the right lateral wall of the sigmoid. The mass is in the right iliac fossa. My surgeon made an incision in the retroperitoneum during the operation. We're not sure if this is a plausible location for recurrence from the positive margin or whether the location argues against it.

- An abscess with pus was documented at the tumor site during my surgery. E. coli was found in my blood in May with no identified source. The mass has never been sampled. I have ongoing low-grade fevers.

- I have not had a biopsy yet and have not seen an oncologist since the surgery back last year.

I’m hoping for any perspective on this picture and posting a few places though also open to advice -does this look like a straightforward recurrence, or does the clinical picture leave room for other explanations? Anything we should be asking that we aren't?

Thank you for reading. and really grateful for this community.