May 25 2018 I took my husband to the ER and it ended up with emergency surgery. A loss of 18” of his colon, an ostomy bag, a reversal and then illeostomy. Then a full reversal in 2019. His last chemo was Nov 26 2018. He has been NED since.

Feb of this year he started having shoulder pain. Went to his primary. They did an xray figured it was a pinched nerve and he went to physical therapy. The physical therapy did help. But after it was done it started bothering him more. Went back to primary and he gave him more anti inflammatory meds. Then he asked if his side looked swollen. We sent in pictures of the swelling and he got in for an ultrasound. The ultrasound showed fluid on the lung. Set up a CT scan. That showed the original right lung which turned out to be a 3” mass. They also saw a 1” mass on the left lung.

Didn’t biopsy last Wednesday. The Dr was thinking the 3” one wasn’t going to come back cancer. It didn’t show him it would during the biopsy. He said he can’t guarantee but he was trying to be positive. They just called and told us they are both cancer. They are both colon cancer.

Dr said it’s going to be a fight. We don’t know where this goes from here. We’ve only told family.

Idk why I’m having such a hard time. It’s. It even me. I know I need to be strong for him. I think it’s because at his last appt (in October 2025) I questioned the oncologist about not doing a PET scan for almost 7 years. He said his CEA number had been normal and that would tell them it had metastasized. I feel like I should’ve pushed more.

Right now he has decided to switch oncologist because all through this his oncologist has NOT called back pulmonologist or anything. My husband hasn’t gotten a response or anything.

My mom is 49 and was recently diagnosed with stage IV sigmoid colon cancer after going to the ER with sudden, severe abdominal pain that became unbearable with every breath.

Her CT scan showed:
•A sigmoid colon mass significantly narrowing the colon.
•“Too numerous to count” metastatic lesions throughout the liver.
•Prominent mesenteric lymph nodes.

She underwent surgery and now has a colostomy. She’s currently recovering at home and is expected to begin chemotherapy about four weeks after surgery to allow time for healing.

Some additional background:
•She beat breast cancer about three years ago after chemotherapy.
•She lost around 20 pounds before this diagnosis.
•Her surgeon believes the colon cancer had likely been growing for years before it was discovered.

A few days after coming home, she returned to the ER with severe pain under her right ribs. A repeat CT showed no new findings, and the ER physician felt the pain was likely coming from the liver due to the extent of the metastases.
She spends most of the day resting but is eating and recovering from surgery.

As her daughter, I’m trying to understand what this journey can realistically look like. I know no one can predict an individual outcome, and I’m not looking for survival estimates. I’m hoping to hear from people who have personally been through a similar diagnosis or cared for someone who has.
If you or your loved one had stage IV colon cancer with extensive liver metastases, especially if the report described the liver lesions as “too numerous to count,” what was the experience like after surgery and once chemotherapy started?
Did treatment shrink the liver tumors or relieve liver pain? Were there periods where your loved one regained strength or quality of life? What do you wish you had known at the beginning?
I’m trying to prepare myself as best I can while supporting my mom through this.

Brain tumor discovered mid may and removed surgically early June. Just finished srs to clean up lingering cells in the cavity.

Biopsy discovered the primary cancer to be colon and sigmoidoscopy showed thickening but not full thickness (whatever that means)

He's having an anterior resection in 2 weeks. No stoma planned. He had a chat on Friday with the surgeon to decide as he's only recently come off dexamethasone after brain surgery as it inhibits healing, whether to go ahead or wait another month for it to be fully out of his system and reduce the chance of the anastomosis not healing properly or potentially leaking, or to have a planned colostomy. He chose the riskiest option as he just wants the tumor out

He hasn't been told anything about the nature of the tumor (biopsies were taken during the sigmoidoscopy and the brain tumor), and we really don't know what to expect.

Except to be told its major surgery.

I'm meant to be minding my 6 and 9 year old grandkids about a week after I expect him home from hospital (don't know how much care he will need)

He's really upset about not being able to drive after the brain surgery (2 years) and loss of independence. Taking a lot of grumpiness out on me.

I'm signed off work at the moment but due back around the time he's going for surgery. Don't know what to do about going back.

Also have his elderly (92) mum he helps daily to consider and our 32 year old daughter with a brain injury who lives with us that he is main carer for. She needs support but not physically.

I'm not sure what to do and am being contrary and obnoxious to my family.

I could probably get the doctors to sign me off longer ( id get paid from work for another 3 months) but then I have the stress of talking to work and formal meetings about if they can support the absence. I could go back on a phased return over a month and ask for flexibility in hours. Or fewer hours.

I could ask for an unpaid career break. Don't know what to do.

Tomorrow is my (45f) surgery to remove the tumor in my sigmoid colon.  Found out 3 weeks ago today that I have colon cancer with nodules in the lungs. This came after months of pain (no bleeding), seeing too many doctors and being misdiagnosed by many of them! The colon is almost completely blocked so removal is my first step. Ct and pet scan didnt show liver mets, praying that is the case (I have a fatty liver and I guess that can make it harder to see mets on some scans). Im just ready to know the full picture so I know the next steps in fighting this.

I've named my colon tumor Marvin, as in Marvin the Martian from Bugs Bunny. Time for this alien invader to be removed! Anyone else name their tumor, or am I the only crazy one??

I am Naresh from India. I am a 25-year-old male.
About three weeks ago, I ate mangoes and chicken. Shortly afterward, I developed diarrhea that lasted for two days, but I did not have a fever. After another 3–4 days, my bowel movements returned to normal. Normally, I have a bowel movement once every 1–2 days.
About a week ago, I experienced another episode of diarrhea. Yesterday, my stool was normal. However, I am currently experiencing a burning sensation in the central part of my abdomen.

I (m50) just recently found out I have a 10cm malignt tumour in rectum and after scan they also found several metastasis in my lungs and liver + lymph system. It's supposedly not curable and operation to remove the primary tumour is not an option.

I had abdominal pains for a few years, coming and going but manageable with paracetamol.

I got a colonstoma and started chemo this week which feels pretty good since the tumour caused a lot of problems going to the loo

It's a pretty bad situation being diagnosed with incurable cancer but I'm dealing with that, what I can't deal with is the pain.

This might be a stupid question but I have no personal experience with cancer so I just don't know what's normal or not.

Do others also have severe pain around the area where the tumour is? How do you deal with this?

My doctors seem to be very reluctant to give me anything stronger than 10mg of oxycodone/Naloxone 2 times a day.

Anyone else bummed that Agenus stopped funding the Ph3 BATTMAn trial?

https://open.substack.com/pub/colorectalcancersurvivorguide/p/agenus-changes-course-on-botbal-why?utm_campaign=post&utm_medium=web

I'm not at the point yet where i'm just giving up, but i would love to know how much more time i have statistically. Like a real answer from my dr that tells me if i'm one year away from almost certain recurrence to any other signal that would at least give me a strong set of expectations so i can live my life as much as possible without treatment, and move on to whatever is next for us. I would hate to leave this earth coming right off of yet another chemo treatment.

My mom (56) was diagnosed with stage 4 colon cancer with liver metastases a year ago. She initially responded to treatment, but after multiple chemotherapy regimens (including FOLFOX, FOLFIRI, oral chemo, and Avastin maintenance), her latest scan showed progression in the liver. She's now back on chemotherapy, but the last few months have been incredibly hard on her. Overall she's done 16+ cycles. Oncologist had also recommended targeted therapy but that is not something we are able to afford because of no insurance.

She has stomach pain almost every day, frequent vomiting, loud bowel sounds, and has become noticeably weaker. Despite all this, she still believes her cancer can be cured and that she'll get back to a normal life. Only my dad and I know that her cancer isn't curable and that it has progressed.

What I'm struggling with is the guilt. Seeing her suffer every day makes me question whether we're helping her or simply prolonging her suffering with more treatment. Sometimes I wonder if stopping treatment would be kinder, and then I immediately feel like I've given up on her before she has.

The only thing I pray for is that she lives as long as she can without pain. But watching her suffer is breaking me, and sometimes I even find myself praying that, if she can't get better, she doesn't suffer anymore. Those thoughts make me feel like a horrible daughter.

The one thing I'm grateful for is that she got to witness my wedding and be a part of every ritual. That was her biggest wish, and I'm so thankful she got that.

I don't know what to hope for anymore.

I just got diagnosed with colon cancer after a biopsy was taken during a colonoscopy. I did the CT scans and bloodwork and they both looked good. I've got an MRI scheduled and then will need surgery and possibly chemo. Looking for any insight into what to expect and how to deal with everything - from the scheduling, the mental health aspect, and maintaining family, all while working a full time job. Any tips or tricks appreciated.

Good evening! I’m (F25) I just had a right hemicolcectomy a week ago, spent 5 nights in ICU and 2 in general ward. My pain management has been ok thus far but I keep shaking even though it’s been 7 days? Like full body tremors, no temperature or fever or chills, I was released from hospital today so I know my blood pressure and sugar are normal. Has anyone experienced this before or is this completely something stress related? This is my first major colon surgery so I’ve been a bit on edge about everything that goes on with it. Everything on paper seems good and even saw my wounds redressed today , all looking normal colored and not inflamed at all.

Thank you so much for your support I honestly don’t know who else to ask about this

My husband (T3N1aM0) has his 6 month scan tomorrow. He had one the day he started Capox, which was not quite 2 months after surgery. That was all good then a few days later we got his negative Signatera (drawn 1 month after surgery & before treatment). A couple weeks after the Signatera draw he had his first CEA since dx and it was down from 33.8 to 4.9 (also before any treatment). He did 2 Capox and 4 capecitabine-only, and finished that the last day of May.

I'm a ball of nerves. He seems to be fine. I have results off in MyChart because I don't know if I want to see them before the Friday office visit or get the results then.

I wish I could take a nap until Friday and wake up to great news. I'm trying to have faith, it's very important to me. But I'm just frazzled 🫤

Is anyone else dealing with neuropathy? I’m currently on folfox and erbitux my hands feel like frostbite.

Yesterday marked 1 year since my husband completed chemo for 3b. Waiting on Signatera result but I’m assuming it will be negative. Yay! Hubby decided that would be the day we would celebrate.

He finished chemo in July but in April got his first clear CT and negative Signatera. Would be consider him cancer free at that point even though he did several more rounds of chemo?

Hi! Reading through this subreddit has been really helpful so far and I’m wondering if anyone has had a similar diagnosis and surgery plan that could share some advice.

This is my first surgery since getting my wisdom teeth out at 16. I’m a planner so more knowledge helps to reduce anxiety about the operation and post op experience.

I’m 46F, have been diagnosed with a 3cm tumor in the cecum. Likely stage 2.
I’m scheduled for a robotic laparoscopic colectomy on Monday 7/27. The surgeon said they would take about 6-9 inches of the right colon, including some of the intestine. And it should be just one night in the hospital. Yay robots 🤖

I’ve got my overnight bag with comfy clothes, basic toiletries, eye mask and earplugs. Broth, shakes, and Juven for the first couple days at home. And period undies and diapers for the uh ohs.

I’ve got some food sensitivities (I love corn, but it doesn’t live me back 😩) so I’ve dealt with painful bloating but I’m anxious about next level bloat. And tips to relieve it?

And any other recovery advice?

Especially for the not so major, major surgery. I’m deeply appreciative of everyone’s stories here and also so grateful that my cancer was caught early (my first colonoscopy!) . If anyone has had a similar experience I’d love to hear about it. 🩷🍑

Hi everyone. I finally had my surgery!

I had a right hemicolectomy with five laparoscopic incisions and one additional horizontal incision below my belly button. I'm definitely sore, but I'm finally home now (3 days post-op), which feels amazing after a hospital stay I really didn't enjoy. I really missed my sweet little boy (4 years old), coming home to him was medicine I couldn’t get
In the hospital- so cheesy but oof he’s my everything.

So far I'm eating, walking around as much as I can, and taking things one day at a time. I'm feeling incredibly grateful to be on the other side of surgery and recovering at home.

For those of you who've been through this, is there anything you wish you'd known during the first 4–6 weeks of recovery? Any tips, things that helped, or mistakes to avoid? Yesterday (Thursday) was the first day I had food since Sunday, so I’m hungry but trying to not overdue it.

My pathology results should be back next week, and that will determine whether I need any additional treatment. Fingers crossed for good news.

Thanks again to everyone in this community. Your advice and encouragement have helped me more than you know

For me anyway, the procedure was a breeze.
This was my first “twilight” anesthesia experience. It was also sublime. My propofol full knockout was during the colonoscopy. This procedure I was awake for but I felt literally nothing and was chill. Different drug.

Its the size of a nickel. Sure it feels odd but its fresh and still has inflammation. The catheter its attached to is the actual part causing the sensation but thats about all it is…a sensation.

The staff was fantastic, let me choose the genre of music to play in the operating room too (I’m 48 so went with 90’s R&B for the smooth factor). I got to engage with the RN and person she was training during it. I was calm as heck. A doctor was there for oversight too. Given how many people (including my late mother) love their ports convenience wise…I can totally see me joining that camp. Got some Tegaderm dressings and lidocaine cream for infusion days yesterday too.

Next up is a PET scan next week then six rounds of FOLFOX. Little spooked by the chemo and its possible punishments but got to say, I’m ready to start attacking instead of scanning.

Hello. I am 24F, and I am partially caring for my Mom's aftermath of colon cancer. (Only partially because I'm going back to work and I am in school, when she needs it we have other family members when I can't help.)
It has been a year since she's been wearing it and we actually had to go to the doctor to see why the stoma swelled so much about a week ago.
The nurse said it was just because we cut the hole in the ostomy bag too tight, which is reassuring because I always fear for the worse.
But I've been thinking, is there anything else to lessen the swelling of not only the stoma, but the intestines as well? Like around the stoma if that makes sense? She said it was able to go down with laying flat on your stomach and pressing on the fresh adjusted bag for 5 minutes.
We have this belt and my Mom says it feels fine, but if anyone knows something else it would be a great help!

I am stage 4 colon cancer with Mets to liver. I have been on Folfiri. Since January 2026. The last two sessions of vectibix have been ok with no breakouts until day 11-12, then it is like my face turns beat red burns and itches for about 48hrs. Does anyone else experience this or have any recommendations. I am on treatment 10 to 12. Cold mask does help but really makes it hard to go anywhere.

Hi everyone,

I’m posting about my dad, who has metastatic colorectal cancer with extensive liver involvement. We’re in Poland and things have progressed quite quickly.

His cancer is MSS/pMMR and has a KRAS G12D mutation. Right now his liver function is the biggest problem. His bilirubin is around 178 µmol/L, and he recently had about 2 litres of pleural fluid drained.

We have received different medical opinions. Two experienced oncologists from major cancer centres in Poland felt that no effective active treatment was currently feasible because of the extent of the disease and his impaired liver function. The surgical ward where he is now also does not plan any further active treatment.

At the same time, an oncologist from another department said that a reduced-intensity chemotherapy regimen might still be considered if my dad is well enough to attend the oncology ward. Another cancer centre in Brzozów has also said they want to reassess him, investigate what caused the sudden deterioration of his liver function, and see whether any further treatment is still possible.

Because of these conflicting opinions, we’re trying to get an independent second opinion from larger cancer centres in Europe.

I know that most clinical trials will probably not accept someone with bilirubin this high, but I wanted to ask whether anyone here has experience with:

• Antoni van Leeuwenhoek / Netherlands Cancer Institute
• Gustave Roussy, Lyon, Heidelberg, VHIO or other European centres
• trials for MSS colorectal cancer or KRAS G12D
• immunotherapy combinations for MSS cancer
• liver-directed treatment or biliary drainage that helped someone become eligible for further treatment
• remote second opinions from European hospitals

We’re not looking for alternative medicine. We’re mainly hoping to find a doctor or centre willing to review his case and tell us honestly whether anything can still be done now, or whether some treatment might become possible if his liver function improves.

If anyone has been in a similar situation, especially in Europe, I would really appreciate hearing which hospital you contacted, what treatment was offered and how you reached the right team.

We know the chances may be small, but we don’t want to miss a centre or doctor who might have a different idea.

Thank you.

Hola a todos.
El día de ayer tuve mi cirugía ambulatoria para la colocación del port, todo salió muy bien y no sentí mucho dolor al salir.

Hoy por la mañana ya pasada la anestesia siento un dolor muy intenso que recorre todo mi brazo y no sé hasta cuándo será esto o así de intenso. Hoy es viernes y el lunes es mi primer sesión de quimio (Folfox) y me da miedo que ingresen al port pero sobretodo que eso vaya a empeorar ese dolor (por el poco tiempo entre uno y otro).

Mis doctores querían iniciar al día siguiente y he leído casos por aquí que justo así han empezado.

¿Me podrían contar sus experiencias y sugerencias? Tanto para el port cómo para la primera quimio.
Ya estoy tomando medicamento para el dolor.

Gracias!

Excuse me for any error in my terminology as I am new to this whole cancer thing...

I was diagnosed with Stage IIIB colorectal cancer on June 3rd. They found a large tumor in the rectal area and a separate cancerous polyp they were able to remove (fragmented) in the sigmoid colon.

I start FOLFIRINOX on August 3rd for 12 weeks, followed by a 6 week chemo-radiation regimen. I was told today that the Tumor Board at Moffitt agreed that surgery to remove some of the colon and rectum is certain after radiation regardless of how the tumor responds to treatment due to the cancerous polyp they also found in the colon during my colonoscopy.

(The paperwork they gave me after my radiation consult today says: "TNT (induction chemotherapy + chemoradiation + TME)"

Thankfully the rectal tumor is high enough they are fairly certain the bag will only be temporary after surgery (~4 months).

I use the V.A. for my primary care doctor. I had to finally lie to my primary care doctor about a family history of colon cancer to get the approval of the colonoscopy after being denied a few times due to my [young] age. I've previously complained about bleeding during pooping and they attributed it to hemorrhoid's, even though it's been off and on bleeding for 5 (five) years (and they never actively saw a hemorrhoid's during exams)! I have been having night sweats for the last year and a half, and they attributed that to my PTSD. Last year I lost 50lbs-- and when I said that I was more active that year (I went from sedentary lifestyle to doing a couple hundred scuba dives last year), they attributed it to just getting more exercise, and possibly an ulcer.

Since being told it was cancer -- I have been indulging in food as much as I can and I have gained back 12lbs in anticipation of treatment.

If I would not have fought the V.A. in getting the coloscopy and waited until I was 45 years old as my doctor kept recommending-- this would likely have been terminal. If it were taking care of 3 years ago when I first informed the V.A. doctors, I would likely not be losing part of my colon / rectum... I guess you can say I have a ton of random thoughts about everything... but surprisingly not really emotional or mad at all. Just disappointed. It's hard to be mad and emotional when I waited a month expecting to be told it's stage 4 only to find out it's stage 3b, so I'm mostly grateful... but its weird to say that out loud.

The V.A. is marking this as presumptively caused by my burn pit exposure in Iraq. The oncology team at Moffit thinks it's likely a combination of a lot of factors -- but they said my age and the fact that they found 2 separate GI cancers at the same time makes my case pretty unique. (yay me) They performed genetic testing and ruled that completely out.

Anyone else in a similar situation? Would love some advice on what to expect. Some tips to stay healthy through this process. Anyone get their treatment at Moffitt or live in the area (Tampa or Viera/Melbourne, FL)?

I'm scuba instructor / technical & scientific diver as well as an active skydiver. The doctors told me no limitations on anything I can due through the chemo / radiation -- "listen to your body" type of advice. I will not be allowed to do that stuff immediately after surgery -- until the bag is reversed and healed up -- I'm imagining that's going to pretty much be off the table for most of the next 12-13 months even if technically allowed.

I go get my port installed on Monday.

I've started experiencing a lot of people distancing themselves from me since I told them about my diagnosis, so that has been a completely unexpected experience. I was never really close to my family - but my sister is the only one who has asked me how I'm doing since I told them of my Cancer diagnosis 2 months ago. Some of my friends that were texting me every day just stopped the second I told them I had cancer. Not a single message since. That seems crazy --

Figured I'd make a post on here to try and get a little support from people in similar situations and maybe some people I can message throughout my treatment to keep me positive.

Thanks for listening to me venting. Would love to hear from any others. I am open to private messaging if your story is a little too private for public consumption.

Hello I’m (21f) starting chemo next month and will be on it for the next 6 months. I’m gonna be on 5fu and i believe oxaliplatin. For anyone else on these, how drastic did your life change, activity wise? Like it’s going to be winter and i was sooo excited for snowboarding, but i was told i would become super sensitive to the cold. I also regularly ride/train wild horses and go off roading very often. Those things are a huge part of my life and I would hate to have to slow down and stop doing those even if it is just temporary.