The Colon Club

This is my first post. I just don't know who else to say these things too.

I was diagnosed with stage IIIc colon cancer in September 2015 at the age of 27. They removed a tumor that was blocking my lower sigmoid colon, along with part of my colon. They also removed several lymph nodes. Then I started 12 rounds of folfox and 5-fu chemotherapy in October 2015, finishing in March 2016. My first colonoscopy after chemo was clear, in July 2016. CT scan in October 2016 was also clear. My blood work has been good.

I just got a second CT scan and a bone scan done two days ago. I had been complaining of back pain since October 2016, and my oncologist had left it up to me if I wanted my second CT scan at 6,9 or 12 months. I am extremely anxious so I just decided to do it now.

So they told me the results yesterday. They stated all my organs are clear as well as my bones. But they found enlarged lymph nodes in my peritoneal cavity/abdomen. So, tomorrow I get my urgent pet scan. They said the results of that will determine if a biopsy is needed.

I am nervous and scared. It could be nothing - the NP said scarring, or inflammation, or due to recent GI distress, which I have had for the past two weeks. I basically am jumping to worst case scenario and am having a hard time being rational and positive.

No advice, but hoping you have good scan results.

Welcome sammer, its Ok to be scared. Im also scared for my wife - because of the unknowns. Get your results of your PET from your Onc, then methodically come up with a plan together with him... Hoping for the best.

I hope you have good results!*hugs*

Hello. I had a very similar situation. I was IIIb with 2 lymph nodes effected. I completed 12 rounds of Folfox with no real issues except having CDiff twice. I had a clear colonoscopy in December and my first post CT scan in February which showed an enlarged lymph node in my mesentery. I opted for an immediate PET scan which showed two enlarged mesentery lymph nodes with minimal uptake of the dye. My PET stated both nodes had little to no metabolic activity. Tried to do a biopsy but was told they were way too small. My oncologist wants to wait three months and rescan which is in June. He feels it's probably benign but I still worry. My oncologist claimed cancerous nodes will "light up" on a PET. Luckily mine did not. He feels they could be reacting to something else. Hopefully its the same case for you. Take a breath, Good luck and God bless...

Thanks all.

It's frustrating to always have the worry of recurrence in the back of my mind, even when tests or blood work comes out ok.

Two more hours until the scan - and then, I can eat!

I'm right there with you on this. In my case, it's the reverse. My CEA is high but so far all my scans have come back clear. So I get to wait a month to have a repeat CEA to see if it's the same, lower, or climbing. I would normally be jumping for joy with clear scans but the CEA is ruining the party. Since the elevated CEA, over a two week span, I've had another CEA test to rule out lab error, CT with contrast of chest/abdomen, small bowel capsule endoscopy, PET/CT skull to thigh, and a colonoscopy. All the diagnostics have come back clear so there's no current explanation on why the big CEA spike.

That really sucks. It's like you think you're all good feeling healthy and then all the tests have to be done at once for something that doesn't seem that crazy.
It's good to hear your scans are clear, Hopefully your Cea will drop.

good luck sammer718 with your PET scan and hope all is well.

My mom's CEA just hiked before 11th treatment, next week to be re-tested, so having a bit of a worrying Easter.

We are trying not to worry until we have more information, but sometimes it is not that easy... Best wishes to you and everyone on this board.

How did it go?

They saw the lymph node light up on the scan, so next step is needle biopsy. My oncologist said its next to my kidney and she isn't sure if they can get to it for the biopsy. She said she cannot think of what else would make the node enlarged besides cancer. Chemo is likely and she said "the prognosis we talked about earlier will be different" and I didn't ask for more details because I was scared.

I'm also getting an mri of my pelvis because there were lit up areas there, but that can happen on women.

Did blood work yesterday but don't know the results.

I am so sorry, Sammer. I wish this horrid disease would go away and leave us all alone!

This could be just a bump in the road, to be dealt with, and moved on from. I hope it is! Please keep us updated.

Good thoughts and prayers to you.

You should do HIPEC before chemo if possible. Chemo is not good at reaching things on the peritoneum. Scans can also miss peritoneal disease so surgery is best to really know what's going on. Ask about this. Good luck.

I saw my oncologist today. The enlarged lymph node is tucked away with my kidney and too close to my aorta for them to remove it. The biopsy is scheduled for Monday but she wants to do chemo either way. The stupid 5 fu pump again, along with avastin and irinotecan. Then possibly radiation. She mentioned being in maintenance chemo indefinitely.
I also got a pelvic Mri to determine if the area on the pet scan that lit up is a mass or my bowel.
My CEA was 1.9 in February, now it's 3.2. Really hard to be hopeful and positive right now.

Right now I live in Hawaii. My family is in New York so I would likely move back home for this. I'm working on getting my medical records to my oncologist in New York for his opinion.

Just feeling anxious and almost like I'm in a fog at this point.

I had a lymph node removed that was closed to the aorta... had surgery at a major NCI cancer center here in Atlanta at Emory University Hospital.

If you can get to NY and consult with a major hospital that handles more complex surgeries might be a good choice.

Chrissy