r/coloncancer

Hi everyone, here just venting i guess.

I work away as a mechanical fitter. September last year after working three weeks away noticed blood in my stool dark red and on the toilet paper.

Kind of just brushed it off as a lot of my work is heavy/ strenuous and put it down as ive just strained something.

Kept an eye on my stool from there but all returned to normal happy days right?

January this year me my partner and some friends ventured japan for 3 weeks. Wasn't till the last leg of the journey I had a bowel movement where large amounts of dark red blood featured and large blood clots were on my toilet paper.

Fast forward to four weeks ago where I had a first time appointment with a GP in a new area (moved houses recently). When I stated my concerns with out hesitation pushed for gastroenterolagist specialist check up.

This leads to a colonoscopy via the specialist recommendation. (yes the bowel prep isn't great) my tip is just have a bottle of water ready to chase the bowel prep.

Post colonoscopy.. specialist reveals they've found a mass in my colon, 9cm up from my anus roughly 30mm in size.

They believe it looks strange, biopsied it and wanted me on that day to have a contrast CT scan. This happened on a friday. They said results will follow on monday.

Monday rolls round waiting for the phone to ring when it finally does its not the specialist who is on the phone it was a colorectal surgeon who wanted to book an appointment with me asap. 30 minutes later I get the delayed news that the biopsy had returned positive for cancer cells.

Appointment with the colorectal surgeon glosses over a lot of everything to start with an explains that he would like as much information as possible before going forwards trying not to freak me out if there is no reason for it. Explains how theere is basicly two options forwards being either surgery or chemotherapy/radiotherapy however he would like me to get an MRI and carry out a flexible sigmoidoscopy first before discussing those options further.

MRI suck if you've had one you know. This was only a 20min procedure thankfully! They didnt tell me till I was lying down that due to the MRI having to be carried out of my bowels they inject you with something to paralyse your bowels due to how much they move and it blurs the image.

Well before the inject this into me they tell me how it may effect my vision and cause my eyes to blur everything.. but hey it only lasts 15mins apparently. (starting to wish I didn't drive their by myself)

With the MRI complete only had the flexible sigmoid remaining.. The bowel prep for this is far better as you only need to stop eating at a certain time the night before drink and lots of fluids the night before as you wont be able to have any in the morning before the scope. The worst part is the enema.. boy was the nurse rough when she put that in.. caused bleeding and for a few days after I wasn't sure if I was sore from that or the surgeon. (be nice to the nurses!)

Right the surgeons results that leads to today. He leads with that after the sigmoid scope he discusses the best options forwards with a panel of doctors. He mentions that the radio/chemotherapy option is only a trial here in Australia with limited information on results. Best case is that there is a 30% chance that this option with get rid of the cancer completely, if it doesn't 3-6 months down the track I will still require surgery.

Ive decided to skip the chemo/radiotherapy step and go straight for surgery. He goes one to to explain the size and location with the MRI results they also confirmed the following T2-N0.

T stands for Tumour

2 Stands for the size and if it has spread to near by tissues.

N stands for Nodes (lymph)

This confirming the cancer has grown into the colon walls.

This requiring an anterior resection where the remove the section of colon with cancer and join it back together. While it heals I'll have a stoma or colostomy bag.

So here i am ranting at on reddit 2:07am.

I hope this helps anyone else going forward, if anything is weird going on with your body please please just get it checked out. Since all of this ive only had two events where blood was evident (that im aware off) even today everything seems completely fine.

2 months in, it’s clear to me that it will not be financially sustainable for me to keep doing a Folfiri infusion every two weeks. With infusion day, Nadir, and sideffect management, I am left with about 10 working days per month, quite scattered.

Unfortunately, still the breadwinner of our family. While exploring my options on the financial side (which are not many if any) -

What are my options on the medical side?

What can i ask my oncologist? Is it possible to space out the infusions? Ask for a different protocol? Etc

Any other creative ideas?

Thanks.

EDIT:

I’m outside the U.S., and pretty well informed and advised on my financial options, so really just asking about the medical paths.

My mom was diagnosed with Stage 1 (T1N0M0) rectal cancer in June 2025 and underwent LAR and finished 6 months of adjuvant oral chemo. The pathology showed a 1.5 cm G2 mucinous adenocarcinoma, no LVI, no PNI, no tumor deposits, low tumor budding, and all 13 nodes negative from cancer. She's been NED since and the last CT scan from Feb 2026 was also clear.

This is all her CEA readings since she was diagnosed:

June 2025 (pre-surgery): < 1.7

Aug 2025 (post-surgery before chemo): 1.23

October 2025 (mid-chemo): < 1.8

Feb 2026 (post-chemo): 1.45

May 2026: 2.84

As you can see, she never reached this level before so I'm really surprised. Her scans are scheduled every 6 months so the next one would be on August. I understand this value is still normal but its hard to ignore given that it doubled in just 3 months. Hoping others can share their experience with CEA fluctuations like this and if the scans were moved earlier because of it. I guess I'm just looking for reassurance here. Thank you!

I (male, 19 year old) was recently diagnosed with stage 3 colon cancer and it’s leaving me to feel emotionally and physically drained. Mind you, this cancer diagnosis came out of the blue as my family has no history of cancer whatsoever. After two days of diagnosis, surgery (my first ever surgery) was performed to remove a part of the colon which contained this mass/tumor, and it was a success which I’m really grateful for. I am now in my recovering process and am expected for the stitches to be gone in 4-6 weeks. However after the given recovery period, I will be starting chemotherapy which is scaring this shit out of me, as I don’t know what’s to come.

If anyone has any tips for me in my current situation, I would greatly appreciate it. ❤️❤️ I would also like advice on what I should be expecting throughout my recovery journey ❤️ (Sorry for the bad grammar, I’m uncontrollably shaking as I’m typing this)

34 F diagnosed a month ago with Stage 2 colon cancer. I have a partial colectomy scheduled for next week and don’t really know what to expect for the recovery process. Any advice and tips are appreciated!

Context: Mom was first diagnosed stage 4 colorectal cancer in Nov 2025 and had undergone surgery within that month as well. The surgeon successfully removed the tumor but still afraid and worried the baby cancer cells would spread to other parts which everyone is telling her to start chemo. After countless scans and all, her body seems fine and has not metasised. Lungs liver all ok for now.

Mom’s sister, my aunt who was 76 years old, passed away due to side effects from the chemo. This caused her not wanting to take chemo and live happier life. It was traumatic for her when she was hospitalised for 3 months.

She told me that she could feel her immune system is weak and her body is fragile and she’s pretty thin now so she said she didn’t want to take chemo.

She started eating healthy and all now too. I can see her mood is getting better too. I would encourage her to exercise and walk bit by bit sometimes.. cuz she gets tired easily

I would like to know if there’s any successful stories whereby people who got diagnosed, refused chemo and got to live til old age? I know many people would advise to take chemo. Even some people are scolding her to take chemo…

I am respecting my mom’s decision and I will be there for her as much as possible.

I have stage 4 duodenal cancer that has metastasized to my lungs. I had 6 months of Folfox, 6 months off and then started Folfiri and have completed 30 rounds. I have minimal growth and the disease is considered stable. I have no shortness of breath, coughing or low oxygen.

Unfortunately, chemo is my only treatment option and I'm on it until it stops working or my body cant tolerate it. I am lucky enough to suffer minimal side effects except for crashing platelets, which I only know about from bloodwork. I am on platelet meds which are slowly working (and painful).

My question is what is the longest I can hope for? Is 60 rounds doable? Has someone gone years on Folfiri?

I was diagnosed March ‘25, stage IV, liver, lung, bone mets at 37 years old. I did 6 months of folfoxiri - to shrink enough to be eligible for surgery. Eventually I was. Did radiation to the bone met - that has stayed sterilized since and no other bone mets have popped up. I had my surgery back in October to remove 40% of my liver and my primary tumor and have had three!! clear scans in my pelvis and liver. After surgery I did 6 more rounds of chemo. The lung spots are hanging on for dear life and never really did much during chemo other than stayed stable. I am not eligible for surgery , but the nodules are scattered and very small - 2 of size enough to mention (8mm and 5mm). Has anyone had a similar experience? I want to get rid of these with all of my being but am feeling a bit defeated after discussing my last scan results with my oncologist. I took a break to reverse my ileostomy and they grew a bit while I was off of treatment. I have young kids and I just need some hope. I feel so close but so far. I’ve come so far for this to be how my life just continues and eventually ends. Mother father!!!!!! I will be staring back on folfiri to keep it stable. Does anyone have a similar experience, or things they’ve done that worked?

33F, I’m from the UK.

My mum (63) has been recently diagnosed following a sudden hospital admission - we were told it has spread to her liver, that it would need chemo (too far gone for surgical), and then a week later she was back in hospital as her colon had become completely blocked by the malignancy and she needed a stent in it.

She doesn’t want treatment, which I fully support her in. However, trying to find out a rough timeline of how long she might have is really hard. When in the hospital, the surgeon was very kind but would just say things like ‘what I want you to do is keep smiling and go out and live life to the fullest’ - sweet, but how can one do that if one doesn’t know how long that will be for?!

She wants to think about drawing down on her pension so that she can do some things, but because everything has happened so quickly and with zero build up, we’re unsure who to talk to about anything.

Does anyone UK based have any advice please? I’ve found a few things online (prognostic calculators etc), but don’t feel it’s a great idea to just jump into Google.

Everything seems predicated on people accessing treatment, which doesn’t apply to her.

Thank you.

Hi all,

I currently have an HAI pump which was placed late January this year. After my first 3 month scan, it is showing response. I have multiple liver mets and the largest is around 6cm, in an inoperable location.

I have had a consultation with Dr. Kevin Burns out in California, from what I have read in numerous places...he is one of the best. He said I was a candidate to go after the smaller lesions and attack the bigger ones to help kill them and make them smaller. I would of course still have my HAI pump do it's thing.

My liver surgeon who I trust very much was adamant that I cannot have histotripsy and was upset that Dr. Burns said I was a candidate. He said the treatment is new (which I know), and there isn't a lot of data yet. I am a nurse practitioner with decades of surgical experience and critical care knowledge, so I know how to find and read studies. I have seen many promising studies on the efficacy of histotripsy, and it's safety profile. I KNOW it' isn't curative in my instance, but can help get me to being resectable.

Anyways I am just confused and surprised my liver surgeon was so against it. He said since I am responding to the HAI very well, I should continue that and truly be looking toward transplant ultimately to give me the best outcome. Mind you, my oncologist (who is also amazing) has been the one directing me to now look at other procedures due to my liver responding to the HAI pump. He also said Y90 is not an option while I have the HAI pump, because I cannot have both at the same time.

My question is, has anyone here had an HAI pump AND histotripsy? (or any other procedure)? Can you share?

Thank you so much.

- Good news story and update -

Hi everyone! I often avoid cancer related social media for mental health reasons. I promised myself that I'll come share good news when it comes.

Brief history:

- Diagnosed T3N1Mx in November 2024. I had "likely benign" lung lesions, and concerning liver lesions. CEA of 23

- Started with 6 rounds of Folfirinox, ending Feb 2025.

- Anterior resection in April 2025. CEA < 1.7

- 3 Months Capox ending September 2025.

- By this point the lung lesions became "Indeterminate" and the liver "likely benign". The September scans identified a concerning para-aortic lymph node near the surgical site. This was big concern, because it would represent cancer that grew during treatment. The next scan would be January 2026.

- January comes, CEA < 1.7, CT+MRI, liver confirmed clean with the original lesions still there and present, likely hemangioma. They say that the one lung lesion is likely cancer, the other 2 probably scars

- The para-aortic lymph node is determined to be a vascular clip used during the surgery 🤦‍♂️

- February 2026, PET scan confirms the only active site is the one Right Lower Lobe lesion. The MDT settles on Ablation

- I run Paris and London marathons for Bowel Cancer UK, raising £9k, week after London I'm ablated and I have a CT scan the following day

- The lung tumour "grew more than expected", 12mm in Feb, 20mm in April, but ablation is successful and tumour is zapped

I have 2 weeks booked off work, waiting for my results on 15 May, and I decide I'm not going to call and ask for results. Mentally an incredibly tough 2 weeks.

Results come, and other than the mention of the 2 lung scars, everything is clean. "Unremarkable liver, pancreas, kidneys, adrenals", no lymphadenopathy, and importantly "No evidence of tumour relapse".

I now continue being scanned every 3 months. I know this does not necessarily mean cure, long road of monitoring ahead, but we are hopeful!

My sister and I are both stage 4 cancer. She has stage 4 breast cancer while I am stage 4 colon cancer with liver mets. And she is getting worse. She can’t breathe without oxygen and have edema on both her legs and arms. I just came out of chemo last Monday and recovering.

I don’t want to lose my sibling. I don’t know what to do. Writing here perhaps help me think but this just a whole lot of burden.

my spouse 33 year old has been diagnosed with colon cancer during routine colonoscopy, a tumor 6.5cm on descending colon was diagnosed. underwent PET CT scan, blood test for CEA marker and biopsy of the tumor in descending colon. clinical stage is stage 3B/3C. from PET CT scan, it may be possible to touch peritoneal lining (indeterminate). im crying every single day since last few days, cannot believe its happening. have to look for sugery next to remove the tumor, but worried it may be HIPEC procedure if its invading peritoneal. can someone share your thoughts.

Hi everyone,

My mom is stage 4 with a tumor in the sigmoid colon and a single liver metastasis. On March 11, they removed the liver met, but the primary colon tumor is still there.

On May 15–17, she completed her first round of FOLFOX (no targeted therapy yet). She was prescribed this regimen (6 cycles), and she will have the bowel surgery then. She doesn’t have a port — not available at our hospital. Right now, she’s feeling good.

A couple of questions for anyone with similar experience:

1. How can we support/protect her veins after infusions, especially without a port?
2. Has anyone done a chemo-then-surgery approach? How long after your last chemo infusion did you have surgery? And did they do additional CT/MRI scans in between ?

Thanks so much for any advice.

I posted before that we went to an appointment last month for my dad, 76m, (stage 4 KRAS mutation) to discuss next steps for his cancer treatment as the chemo stopped working. I thought he had only ever been on FOLFOX but at that appointment we found out it was not only FOLFOX that stopped working but FOLFIRI stopped working also. It’s in his colon, liver & lungs. He still is active, gets up and goes to work every single day he does construction & farming (self employed).

He just got into a center for clinical trials and they’ve applied for one for one. We’re so anxiously waiting and praying. The oncologist said if this one doesn’t come through, he has 2 more trials they can apply for. We’re hopeful as he said they’ve had promising results for people who have even done like 5 types of chemos before. He seems to have so much life left. He’s not ready to give up yet. Anyone else onto clinical trials right now?

Hey everyone,

I’ve got T2NxM0 rectal cancer about 4 cm from the anal verge and 1cm to the sphincter. The tumor is 6cm long and 2cm thick. My doctor is recommending TNT (chemo + radiation + surgery), and I get to choose the order.

Option 1 is 28 days of radiation first, then 9 cycles of FOLFOX, then surgery if needed. Option 2 is chemo first, then radiation, then surgery.

I’m mainly trying to avoid a permanent colostomy.

What I’m unsure about is this: if I do radiation first, surgery could end up being like 18–20 weeks later, and I’m worried that long waiting after radiation is done might make sphincter-sparing surgery harder because of fibrosis. With chemo first, surgery happens sooner after radiation done (like 8–12 weeks), but maybe the tumor shrink isn’t as strong.

Has anyone actually had surgery 18-20 weeks after radiation in a TNT plan, and did that timing affect outcomes or sphincter preservation?

Appreciate any real-world experience 🙏

Hello,

I'm a stage 3 rectal cancer patient in Scandinavia undergoing adjuvant chemo. I see everyone from the US are getting regular Signatera testing done.

Anyone here from Europe who has used similar options? Good/bad experiences with transferring tumor material from hospital pathology etc?

I have stage 3 and did chemo this winter. I moved for my treatment and didn’t have any of my house stuff to include my workout equipment.
I gained 30 pounds. Yes I could have gone to the gym. But I only felt goodish for 2weeks a month and couldn’t justify 130 a month for a gym membership. It was cold out and I couldn’t be out due to the oxyp as my eyes would start to spasm.

I tell myself you were healing and doing the best you could. If you gained weight you are alive.

I am now onto radiation and I started to feel good but all of a sudden my stomach started to get gassy and painful. I had to stop my workouts. I am working on fixing my diet. I also developed neuropathy due to the oral chemo ok my feet. (Working on that to with my doc and PT)

I just feel blah. I am mad at myself for not being able to workout and getting cancer (I understand it isn’t mu fault)

Just a kinda sad day today. But I shall be ok and it will pass.

It’s been 468 days since my diagnosis. Wife has been an absolute superwoman. House, kids, food, meds, appointments, me. You know the drill.

The thing I appreciated the most is the lengths she went through to make sure I don’t feel like a burden.

I had a huge issue with losing abilities and having to be take care of as well as how intimacy switched its meaning overnight after the first surgery.

While still reviving from surgery #3 weeks good the news: NED! Only to find out within a month: 7 new Mets in my just operated on liver.

Put on Folfiri, and it’s a huge disruption on our life: I’m getting every sideffect in the book, at full volume.

Both her and I have been talking to psychologists specifically from the oncology department.

Recently I’ve been getting signals that I’ve never felt before.

In a positive way - I think she learned to ask for help, which is a good thing. Also communicated to me where I can be of more help which I’m glad - many things I assume were easy just because she did not communicate.

But there seems to be another layer, some sort of phoning it in… cutting corners… not a native English speaker so I can’t find the right way to describe… I wouldn’t say doing the bare minimum, but that’s alike the vibe she’s giving.

Whenever she was criticized (ever, before the cancer) she’s often say “this is the best I can do” - it feels like she just kinda lowered the threshold lately of what that best is.

The real problem is our relationship.

I feel it got stronger of the last year and a half, and we’ve bonded more than ever before. We hardly had any serious fights or arguments, we worked as a team. I was worried she was just holding things and being soft on me because of the cancer, but after 20 years together had a strong feeling she was a more like me - realizing what’s important in life

Whatever the case, it changes 180 recently, with her getting angrier and angrier, and this week a huge blowout - something I haven’t seen for years.

She’s ADHD (not diagnose but aware and managed somewhat well), but I suspect also RSD (completely unaware. - and just my armchair analysis). So explosive is explosives

I’m worried about how sustainable our situation is, especially since now there’s no end in sight.

L oncologo che mi segue mi ha prenotato un appuntamento all istituto dei tumori in ottica di arruolamento in trial clinico. Da quanto ho capito vorrebbero aggiungere terapie sperimentali a quella in programma (Folfox), sinceramente sono un po scettica, qualcuno ha provato terapie sperimentali? E com è andata?
Mi hanno spiegato che solitamente vengono selezionati pazienti giovani che non hanno altre patologie.
Io ho effettuato emicolectomia sinistra tramite Laparoscopia, risultato pt4a pn0.
Sono propensa a non voler accettare la terapia sperimentale. Voi cosa fareste?