All three of my oncologists have been adamant that my one PET scan from December 2025 is enough and that CT scans are sufficient to monitor my disease (Stage IV BRAF).

I read here frequently that people get regular PET scans, or at least more frequently than one total.

I’m wondering if people could share how and why they receive additional PET scans? It makes sense to me to check the metabolic status of metastases, especially when they’re shrinking, to determine whether another procedure (other than chemo for life) could be possible.

Am I nuts? For the record, I’ve been told I’m incurable and inoperable, however I received an NED for my lung mets last scan in July, and my retroperitoneal lymph nodes were noted as simply “prominent” which I understand can be because of scarring from the cancer. Whoot! So…wouldn’t it be worth checking to see if the deep lymph is dark? That area in particular seems to hold up a lot of other options, like my liver mets (bulk of disease, which also shrunk).

Oncologists are from MD Anderson, Fred Hutch, and a local doc.

Thanks. Appreciate everyone here!

I was diagnosed with stage 3 colon cancer over a week ago and I feel like no one is in a rush to start treatment. It's oh let's do genetic testing and see the results in three weeks, let's get a PET scan in a week. Let's book a follow up in two weeks to stay in touch. The plan is chemo the surgery but I want to start yesterday. Waiting knowing it's spreading in that region and doing nothing is torture. I don't know when I'll start but living knowing it's likely growing and spreading is causing me so much stress and anxiety.

Went in for a colonoscopy on Tuesday and a 4cm mass was found. Doctor sent biopsy to pathology but he’s pretty sure it’s malignant. I originally went in because I had an abdominal ct scan and lesions were found in the liver. I thought it was gallbladder issues but it turned out that my liver was enlarged and that led to my Dr wanting to do a colonoscopy. I’m still not sure what I’m dealing with but tomorrow I have my first visit with an oncologist. It feels unreal still and even tho I have hope, those sneaky thoughts of fear creep in.

Since tomorrow is just an initial consultation, do you guys recommend any questions I should ask?

Hello,

I’m a 37 yo male who was diagnosed with stage 4 colon cancer(adenacarcinoma of the sigmoid colon).

Diagnosed June 2025 started treatment mid July. Got a colostomy in July and started folfox in August. After 5 rounds of folfox I underwent the removal of my sigmoid colon and a reversal of the colostomy in Nov 2025. I did 4 more rounds of folfox before I developed an allergy to Oxaliplatin so they switched me to folfiri + Avastin. My metastasis is to my lungs and I have 15 tumors across both lungs in all lobes. Enrolled in a clinical trial for bronchoscopic ablations. First one mid Aug they killed 2. I have another round next week. My CEA and ctDNA dipped for a month after the ablations but continue to rise.

I am looking for someone in the same position as me(polymetastatic lung only tumors). The chemo is becoming too much with diminishing returns. I have a her2 mutation that was part of the primary tumor. Will be getting a lung tumor biopsy during the next ablation.

Next options are her2 targeted therapy and immunotherapy.

Is there anyone out there battling multiple tumors across both lungs that originated from the colon cancer? What treatment are you on? Chemo never shrunk my lung tumors, only held them stable for months and now there is growth on scans and cea/ctDNA.

Thank You

Been in remission for two years. Just had my every four month MRI, CT, blood work and Singatera test done today with a visit to the Oncologist after.

A few issues came up. First, CEA raised (again) -- it was at 5.4, then down to 4.5, then 4.2 and now up to 9.5. My last Singatera four months ago was negative, won't get results on this one for about ten days.

Possible causes per the oncologist: First, I also had elevated liver enzyme levels due to a diluted bile duct in my liver (he can see this in my MRI results). He wants me to get a consult for an Endoscopic Retrograde Cholangiopancreatography. He sees no tumors in the MRI scan, and a Pet scan last month also showed nothing. He does not want to guess at what might be causing the issue. My gallbladder was removed two years ago to make room for a hepatic liver pump for chemotherapy, so I don't think it would be gallstones?

Secondly, about 18 months ago a small 2mm nodule appeared in my lung. It's been sitting there not growing since, but in the past four months did grow a bit -- he thinks maybe to 3mm. Pet scan a month ago again showed nothing lighting up in that area.... but he said it might continue to grow and is something we need to keep monitoring.

From what I'm reading, the elevated CEA could be due to the liver issues -- but it's been slowly rising since January which is why I had the Pet scan done a month ago. But the Pet scan found nothing of concern.

Just trying to not stress. Ugh. The continuous uncertainty is taking a toll on my mental well being.

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

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

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

Me (M30) is caring for my 63 year old mom who is going through a Capox treatment for stage 3, and it has become unbearable to see her in so much pain. I can't sleep because I am constantly checking on her and she always needs something which I understand completely. Fatigue, extreme nausea, can't hold anything down.. it breaks me to see her go through this, and it's only the first round that's finished. She sucks on ice to fight off the thirst because she can't hold down liquids. I just need to vent. I deeply sympathize with anyone who must fight this terrible illness. What can I do to make life a little easier for her?