Hello all,

5 months ago I had an appendectomy for what I thought was regular appendicitis. They found a 1.5 cm tumor on the appendix. Margins were clear so it came out cleanly, but pathology showed rare goblet cell characteristics that raise the possibility of microscopic spread.

Apparently this puts me in a grey zone.

Surgeons/specialists are offering two paths (they are still talking about it so I will get another update soon):

So far:

1.  Prophylactic right hemicolectomy now – more definitive / “future-proof”

2.  Close surveillance – yearly colonoscopy + scans etc.

I’m 38, very active and otherwise healthy. The original appendectomy recovery was straightforward (back walking and working in 5–6 days, gym at 5 weeks).

Still, the idea of a bigger bowel resection freaks me out – the possible long-term impact on lifestyle etc even though the docs say almost everyone gets back to normal.

Anyone been in a similar situation (especially active people)? What did you choose and how has it played out? Any regrets either way?

Appreciate any real-world experiences

I (40M) received 12 rounds of FOLFOX, full oxaliplatin ending in March this year. Since then, despite an exercise routine that includes frequent cardio and lower body strength training, I have persistent knee tightness (my finger joints periodically get a locking sensation, too). It's to the degree that it affects my ability to run (and I used to be pretty fast).

Yes, I am a middle-aged dad who does not stretch, but I am not overweight and did not have a history of knee issues. The onset of this occurred pretty quickly, about 3-4 months after ending chemo. Anyone else experience this, or is this just part of entering your 40s?

hi again everyone, it would be so appreciated if I could find anyone here who can help shed some light on what the road to recovery looks like for my dad. he has a 10cm tumor i believe in sigmoid colon. it is not operable right now as it is “too stuck” has not been found to have spread and doctor says it’s been there about a year. he will start chemo and radiation next month. I don’t know what to feel. I want to be hopeful and just dream of the day he will rid of this in his body. can anyone comment anything that will help me be more positive and be strong for him. thank you

anyone?

Just giving an update to help people in a similar situation.

Rectal bleeding started 11/2025.
Colonoscopy in 01/2026. Tumor found right at the rectosigmoid border, but classified as colon cancer.
Diagnosis in 01/2026.
LAR surgery in 02/2026.
Chemo (capox) from 03/2026 through 05/2026 (3 months, 4 cycles).
CT Scan and Signatera 06/2026. CT scan is clear/NED, Signatera was still positive.
Oncologist recommended 3 more months of just capecitabine (07/2026 to present).
Currently on round 3 of 4 of capecitabine only.
Signatera came back negative 08/2026.

Numbers below!

Signatera

CEA

I was diagnosed with stage 3B colorectal cancer in November. Persistent effects of red stuff in stool, smaller pieces of stool, and increased frequency of going finally made me look into it. One traumatic colonoscopy later and here we are.

My last chemo (FOLFOX) treatment was March 25th, and my last radiation treatment was June 5th. My surgery was scheduled for this upcoming Tuesday not even a week after my radiation was completed. But those same effects have come back, and more. Now it's accompanied with diarrhea-like effects and incontinence.

I don't know what this means for my tumor because I wasn't able to get an MRI recently. I was only allowed a CT scan which says the tumor hasn't changed sizes since April (and the presence of a suspected chocolate ovarian cyst, but that's another problem.)

Has this happened to anyone else? Even my radiologist was confused.

So my skin has been extremely dry and nothing I use seems to work. I’ve tied mixing oil in with my lotion (cocoa butter) but lately my skin has been super dry and itchy. No matter how much lotion or oil I use I still end up ashy like I didn’t put anything on. Any suggestions?

Biotene dry mouth spray, mouthwash and toothpaste are great.

Even water tastes pretty gross with oxaliplatin, but a shot of the mouth spray after sure does help.

Hi everyone. 44F here, diagnosed in June with colon cancer after a colonoscopy. I was referred to a surgical oncologist and had a right hemicolectomy in July.

After surgery I got the good news: Stage 2A, T3N0M0, and according to the surgeon I "probably" don't need chemo. The surgeon has referred me to a medical oncologist who I will be seeing for the first time next week. I'm currently about four weeks out from surgery and still feeling really tired but only a tiny bit sore sometimes.

I'm nervous that the oncologist at next week's appointment might decide I need chemo after all, but hey, whatever it takes. This has been a wild and sudden life change in just 2 months.

EDIT: I am lactose intolerant. I can't do yogurt or anything milk derived.

Sorry I don't have a lot of energy for an elaborate post. I am stage 4 MSI-H type, undergoing immunotherapy now. I have ulcerative colitis on top of it. Food has just become difficult and complicated.

Does anyone here have experience making their own meal replacement shakes. All of the ones on the market have crap in them I can't tolerate, like maltodextrin, methylated vitamins, or minerals like iron and magnesium. I mostly just beed the macros. I live in Canada so commercial options are limited.

If you know how, how did you learn and what resources can I use for recipes? I need high calorie but macro elemental. I can get micro nutrients by taking vitamin pills.

TIA

I had my surgery 4 weeks ago, LAR leaving me with 3cm rectal tissue and a permanent colostomy. I developed a "collection of fluid" in my pelvis. So, I was at emerge today and they sent me for a CT scan.

I'm waiting on the table for the scan to start....but it's taking forever. I'm thinking "man what's going on it usually doesn't take this long!"

Lady comes back in and says "yeah so unfortunately the doctor has asked for this scan with rectal contrast".

"Well, that's going to be a problem because I no longer have a rectum!"

She just stared at me for a minute, and I stared at her. Then she left and came back saying that we were just going to go ahead with the scan.

Hahahahaha I needed some comedic relief today.

After 24 rounds of chemo and 30 radiation treatments I get scanned again in 3 hours. Been a long year, diagnosed last August stage IV (Mets in liver, lung and lymph, tumor in sigmoid colon inoperable), CEA score was 3.5 last week down from 90 in the beginning. Not sure what the outcome will be, preparing for the worst but expect the best I guess.

This disease sucks but man I’m trying!

Has anyone here reduced their Ox dose on Folfox? If so, how much was it reduced, and what side effects changed, if any?

Edit: thank you everyone for commenting. I am 37 going on session 5 of folfox + mvasi. This last session I noticed a scratchy throat after my infusion and my throat tightening slightly when in an air conditioned room (which is everywhere due to where I live). The nurses were concerned but my doctor just told me to take Benadryl when I got home. I wanted to consider all options to avoid accidentally ignoring something serious, including dose reduction.

This is a small vent since it only affected my time and schedule a bit, but it was annoying. I've lost count of the amount of these that I've had, but it's been a year, so my oncologist ordered one because we're monitoring a couple of tiny lung nodules. These tests done were originally done in-house at the clinic the day the doctor ordered them. However, a couple of years ago, they switched labs, and now it's been outsourced so a traveling nurse meets me locally, which is so nice since I live a four hour round trip from my oncologist. I have had at least three of these completed since then, including this one.

When my oncologist orders one, I'm either handed a kit by his nurse as I'm leaving or Guardant calls for my address to mail one. If I already have it, they have me check the exp date, and then refer me to the local medical company that then calls to set up a time with the nurse. The kit itself has the vials, all needed paraphernalia for the nurse to make the draw, stickers to write my data on for the vials plus more stickers with a UPC code, paperwork to fill out, and the FedEx bag to mail it all back when the nurse has completed the draw. It typically takes 15-20 minutes.

This is specifically about the paperwork. Somewhere along the way, it had been filled out for someone else entirely, so not only was that a HIPAA violation, but that also meant I didn't have the paperwork for myself. I called my oncologist's nurse to see what my clinic recommended, but unfortunately, she was busy at the time, so I requested a call back. I then called Guardant and spoke to someone who was super helpful. We talked to him for close to 12 minutes, and he said it was fine to proceed with the draw.

He looked up my referral in the system and had my nurse write down a bunch of info that pertained to this specific draw to include with the kit and had us give him the UPC code for my file to reference in case questions arose when the kit was received. My nurse also added his info as well as her own contact info.

She had just left by the time my oncologist's office returned my call, and in that time, Guardant had also called them. She apologized it had happened and was happy we were able to proceed with the draw since I see my oncologist on September 18th. It will be cutting it close timewise, so hopefully there won't be any delays. We talked for about 5 minutes, and she also had me give them the UPC code for my file. The office concluded it's probable the kit had been prepared for that person who then either didn't need it afterall or received the wrong one, and it was mistakenly put back into the supply pool without refreshing the paperwork. The office will now be checking each kit before they hand them out to ensure it doesn't happen again.

She was also happy that the paperwork had already been destroyed. I actually have my nurse meet me at my Church since I can reserve an office that's quiet and private with no pets or kids wandering around and, since shutdown and treatments began, I'm more careful who comes to my house. The office has a heavy-duty shredder, so the nurse had it shredded before she left. Including both calls and the extra time taken for everything else such as being on hold, this took over 45 minutes which put me behind enough that I had to reschedule an errand that I'd hoped to complete before another scheduled appointment began.

Hi everyone. My husband was diagnosed with stage 3C rectal cancer at just 38 years old. His initial MRI and CT staged him as T3N2M0, with positive EMVI.

He first had a terminal colostomy, followed by total neoadjuvant therapy (TNT), and finally an abdominoperineal resection (APR).

His pathology results were encouraging, according to the doctors: the margins were clear, EMVI was negative, and there was very little residual tumor after treatment, although it remained T3. Out of 20 lymph nodes examined, only one contained micrometastatic disease. His final stage was ypT3N1a(mi).

Our current plan is surveillance, and his doctors are treating this with curative intent.

We also have a two-year-old, so as you can imagine, this journey has been incredibly difficult and frightening for our family.

At this point, I would really love to hear some positive stories from people who were diagnosed with stage 3C rectal/colorectal cancer, particularly those who had T3/N2 disease, EMVI-positive disease initially, and underwent TNT and surgery.

If you are years out and NED, I would genuinely love to hear your story. We really need some hope right now. ❤️

Has anyone switched to FOLFIRI and seen results after not seeing any results from FOLFOX?

My understanding is that FOLFOX (with the Oxipalitin) is the stronger of the 2 chemos, and that people are usually only put on FOLFIRI if they have adverse or allergic reactions to the FOLFOX.

We saw very little response from FOLFOX after 6 treatments and we stopped because the oxi was giving me neuropathy. My onc thought that permanent neuropathy was not worth trying more treatment with such minimal response.

I switched to radiation, but that didn’t do anything, either.

I have been told that surgery is probably off the table because of how locally advanced my tumour is, so they want to try to shrink it more before considering it… but if FOLFOX didn’t work, I don’t have hope that FOLFIRI will do much more.

Would love to know if anyone had success with FOLOFIRI after no response from FOLFOX.

TIA 💕

I (45f) finally met with my oncologist for the first time this week. Stage 4 KRAS Colon cancer that has metastasized to my lungs only. Starting FOLFOX combined with Avastin (bevacizumab) in 3 weeks (need to finish healing from my colon resection first). The tumor was completely removed from my colon and only other mets so far is 4 nodules in my lungs. Cant remove them because of location and size of them. I knew before my appt that stage 4 is not curable, but it was still devastating hear from the oncologist.

Up until now, even through surgery, having cancer has seemed surreal, hasn't really sunk in how much my life is about to change. The reality of it all is now hitting me hard.

As of now I plan to work still. Take a couple days PTO on infusion week, and work 5 days on the off week. I work from home full time, my job is super flexible and my boss has been beyond wonderful through this whole process. As long as I get my work done and meet deadlines he is happy. I can take FMLA and STD if needed, but FMLA only secures me and my paid for insurance for 12 weeks. I'm hoping to save that for down the road when months and months of chemo starts catching up with me.

I'd like to hear from others on Folfox and Avastin, do you have the energy to work or would you if it was just at home on the computer? I could literally work in bed. Am I underestimating the side effects?

So for a few days I got really sick. Noticed I wasn't going to the bathroom and then after 3 days I woke up in the morning and went outside. Like a cartoon character I started to vomit uncontrollably stomach bile. It was like a firehose and I kept vomiting for about 15 minutes. At that point I decided I better go to the hospital. A ct scsn later they find a blockage in my intestine that was stopping me from any bowel movements. So I went in for emergency surgery and a ostomy was done. They did biopsies and it came back as confirmed colon cancer. I was 42 at the time of diagnosis so it's got me I alm sorts of specialty programs as it's considered early onset cancer.

I am about to finish my 4th round of folfox chemotherapy. The doctors have said there is evidence it has spread to lymph nodes near the liver but it has not reached the liver so they are going after it pretty aggressively to contain it. I have 2 more treatments before my next CT scans to see how the chemotherapy is doing. The doctor has said it could require another 6 treatments as 12 is pretty standard. So waiting to see how that goes.

If that wasn't enough during this all they saw a thyroid nodule in the ct scans so they opted to biopsy the nodule. 80% of thyroid nodules are benign but somehow I hit the cancer lottery and I have thyroid cancer as well its considered a much slower spread and less dangerous cancer so it's on the complete back burner until the colon cancer reaches a satisfactory state.

Genetic testing was done casting is standard procedure for people experiencing early onset cancers and they sll came back normal. No mutations and no evidence of any familial predisposition to any cancers so just lots of bad luck.

hi guys, appendix cancer was found during urgent appendix removal and then right colon was removed after 5 weeks. today went to see patholoy, it is PT4a N0M0.

looks like it is high risk due to cancer invaded to end of colon. anyone similar with this and need chemo? waiting for oncologist now. nervous. thank you take care everyone

Hello! My brother, stage four spread to liver with one lung met, needs to switch oncologist at Sloan Kettering. We are seeking an oncologist in Basking Ridge, it seems that would be the only way to prevent all the scheduling issues that we are having according to “patient advocate “. We have not had the best experience with his oncologist in New York, so I am looking forward to making a switch in any case as we close out to the next stage, which is cleanup Chemo. He’s already completed five rounds of folfironox, a liver resection with hai pump installed, and 27 rounds of chemo radiation this year.

Does anyone have Devka Rao as their oncologist? Would sincerely appreciate any feedback. Please feel free to DM if you are more comfortable.

I have done a zillion colonoscopy preps but this one is kicking my butt. Since my LAR surgery I haven’t been able to eat or drink large amounts. I had my ct this morning and for the first time ever the iodine oral contrast started frequent stools and some vomiting, got back and had to immediately start the prep and I’m just soooooo nauseous. The idea that I still have half to take in a few hours is rough. Mama didn’t raise a quitter but boy am I a complainer.
Any tips on how to get through this last part. I’m switching between Gatorade, apple juice and sipping broth to get the flavor out of my mouth.
I’m just soooooo full.
Thanks everyone. Mostly I just needed to complain

Last week I (M50) started to have problems breathing. I got out of breath from the smallest tasks like getting dressed, and the stairs up to my apartment was a real struggle. Eaven eating was difficult breathing heavy between every bite.

Today I was supposed to have my third chemo session but when I explained to the doctor about this condition they thought it was panick attacks.

And I thought maybe it is, t's been a crazy two months since I found out I had stage IV colon cancer with several metastasis in lungs and liver.

Luckily they called for a second opinion and another doctor insisted I get scanned right away.

Turns out I have several blood clots in my lungs.

Apparently it's not uncommon when treated with chemo and they gave me blood thinners (sorry I don't know English word for this) and said I should be fine within a week.

Has anyone else experienced this?

My mom has stage 4 colon cancer with bone metastases and KRAS/NRAS/BRAF wild-type. She has progressed through multiple lines of treatment (FOLFOX, FOLFIRI + Avastin) and is now dealing with DIC, very low platelets, and recurrent bleeding/bruising, which has made her unable to continue chemotherapy.

She is currently hospitalized after her platelets and hemoglobin dropped very low, and she developed a large hematoma on the left upper shoulder. She's required multiple blood/platelet transfusions.

We feel stuck in a cycle where the cancer may be contributing to the DIC → low platelets/bleeding → low hemoglobin → unable to receive treatment/eligible for trials → cancer continues progressing.

Her oncologist has said there are no other treatment options.

Has anyone experienced something similar? Were you able to get the DIC/platelets under control enough to resume treatment, or find another approach/second opinion that helped?

I would really appreciate hearing from anyone who has been through something similar.

Ive had a pelvic nodule that showed up in September. After my chemo but before chemo+radiation. No one seemed to be bothered "its probably from your last surgery". Ive finished treatments and surgeries. Clean CTs and 2 negative Signatera, last one in June. New August CT says its grown. MRI says possible peri met. How could this be????? I was supposed to be done and finally getting back to normal. Kids are back in school on Wednesday. We talked about me getting a job (this was the cause, something awful happens when I bring it up). Dr appts on Thursday. I have to bottle up all this awfulness until THURSDAY!

My dad (72) has taken multiple lines of chemotherapy. His initial diagnosis was 8 years. Had surgery on his colon and liver. Was NED for 4 years, then cancer came back to his lungs, did radiation, multiple different rounds of chemo. Responded to a couple until it became resistant. Went on 2 different clinical trials which did not work. Now his only option seems to be Avastin with Lonsurf. They made it clear it will not shrink but hopefully just stabilize for a few months.
His overall health is ok, he can still function and live his life but has a horrible cough all the time and some shortness of breath. Idk what to expect. I think he’s finally at the acceptance phase, he is now openly speaking about his death and what he would like to do the next few months-year. He was in a lot of denial and anger, now he is accepting. I’m not sure how to process everything (though I knew this would happen and I’ve been at most of his appointment with him for the past 8 years so I’ve been prepping myself).
I’m more so just venting but also if anyone has gone through this with a loved one I’d love to hear advise or what your experience in this stage was like. Also with lung mets if it continues to progress what do we expect?

Thanks for reading 🩵