The Colon Club

I haven't been around since I finished treatment for when it came back the second time. I've just been dealing with the horrible never ending side effects from all the treatments/surgery. Severe neuropathy feet/hands, very slow gut/constipation, emotionally damaged. See abbreviated journey in signature.

So of course I still see my oncologist dr regularly and my CEA has been rising since Feb. 2020. And now it is 80. When I was dx the very first time it was 13. Then when it came back my CEA was normal w/ clear CT scan. So now I'm worried and dr worried. Nothing has shown in the 3 CT scans I've had this yr (Feb, Aug, Dec). I also had a colonoscopy in March that had 7 benign polyps. My insurance denied PET. So we are going to do MRI, which did get approved.

What has your course been with a mysteriously rising CEA?

Gosh that really is such a long time since your original diagnosis and your last recurrence.

My mum had a bounce around with her CEA , only ever had small rises anyway but at a level that normally indicates a recurrence for her . However after ten years something else started to impact it . We are suspecting an embolism affecting the blood supply to her gut ! It rises for a bit them drops . It’s done it twice . However it does drop back down .
Have they ruled out a new primary ?
Take care ,
Stu

Ktwirls wrote:... What has your course been with a mysteriously rising CEA?

I have never had a mysteriously rising CEA, but others here have. You can read some of these stories in the old posts from previous years:

CEA and inflammation
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56410&p=446009#p446009

Some CEA threads -- 2005 to 2015
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51836&p=404364#p404364

I haven't been here for some time. Trying to move on with life.

If you do a search under my username, you'll see my posts on my CEA journey for now coming up on 4 years. Some times I feel I'm talking to a wall with the various support forums as none of my posts are ever referenced. I would think that many would use them as a possible hope that all is not lost with high CEA levels.

Here's a quick summary of what has been happening with me. Back in March 2017, my CEA jumped from the last check up 3 months prior from 5.2 to 15.6. That year my CEA fluctuated between 11 and 20. I had a bunch of tests done: PET/CT, CT with contrast, small bowel capsule endoscopy, upper GI endoscopy, colonoscopy, and MRI. I continued with my checkups which were moved to every 6 months. The next couple of years had my CEA start to climb from 17 to 26 to 28.6. Last year, my CEA jumped to 52. This triggered a CT, MRI, and PET scan. All still clear. A re-test of my CEA a month later showed 44.4. July was the next checkup where my CEA went back up to 52. No CT was done this time. In the interim, I had an MRI done unrelated to my cancer which went from chest to brain. Nothing was noted tumor wise. Last week, I had my next 6 month checkup and my CEA jumped to 84.7. A PET was ordered and again nothing was found.

So far I have found one documented case of high CEA with no cancer found on the Internet. They tracked this woman for 5 years and no cancer was ever found during that period. The only scan they couldn't do was a PET due to the Taiwan nationalized insurance denying coverage. They also started her back on chemo as they thought she was having a recurrence as she was stage 4 CRC. The intro of chemo did not affected her CEA as expected so they took her off of chemo.

My doc has thrown up his hands as we're coming up on 4 years of me going through this CEA craziness. He doesn't know what else to do and if this is cancer related we should have seen something on scans by now or some other symptoms. He said my situation is case study worthy. I'm doing fine right now and many have commented how good I look. He suggested I go seek a second opinion with a doctor who he recommends that does clinical oncology research. I'm holding off as I'm just tired of dealing with this.

Actually you were the first person that sprung into my mind . It was more a technical issue of knowing how to reference your threads . But I have gone away and learnt ! ( I think !)
Good to see you on the forum though ! Are you still taking some great photography?
Hope life is treating you well .
Stu

stu wrote:Actually you were the first person that sprung into my mind . It was more a technical issue of knowing how to reference your threads . But I have gone away and learnt ! ( I think !)
Good to see you on the forum though ! Are you still taking some great photography?
Hope life is treating you well .
Stu

Hi Stu,

Yes, I remember now that you were the few that did actually recall my situation with CEA. As you can tell, I haven't been on much and I guess that's a good thing as I'm occupying my time doing other things. Got my divorce finalized. Been out at the beach pretty much every weekend during the Summer. Got to try out jet skiing. Picked up sailing and got ASA 101 certified. Bought a sailboat a few weeks ago. And decided to dip my toe into online dating.

Yes, I've been still taking pictures. I appreciate that you enjoy my pics. I still haven't gotten around to populating the Instagram account I created to house all of my favorite pics in one place. Got some nice pics of views I saw while on the boat. I even put my first video together of a sailing trip I did in July complete with background music. If you're interested, I can PM you the link to it on my Dropbox account.

Sounds great . Not too technical but I will give it a try .
You sound really great , you have made some big positive moves in your life and I am delighted to hear it . I absolutely love the sea but more kayaking and have had a few goes here skiing etc but never sailing . So pleased to hear your life is picking up . What a difference a few years can make to our lives .
Take care and I would love to have a look .
Stu

stu wrote:Sounds great . Not too technical but I will give it a try .
You sound really great , you have made some big positive moves in your life and I am delighted to hear it . I absolutely love the sea but more kayaking and have had a few goes here skiing etc but never sailing . So pleased to hear your life is picking up . What a difference a few years can make to our lives .
Take care and I would love to have a look .
Stu

Thank you for the well wishes. Just sent you a PM.

zx10guy, despite all the aggravation your high CEA values are causing, I'm sure many would love to be in the same situation (abnormal CEA but nothing cancer wise). My husband's most recent CEA was 51, yet his scan is stable... I really hope he's another anomaly!!

Claudine wrote:zx10guy, despite all the aggravation your high CEA values are causing, I'm sure many would love to be in the same situation (abnormal CEA but nothing cancer wise). My husband's most recent CEA was 51, yet his scan is stable... I really hope he's another anomaly!!

Of course. There are those that wish to be in my situation; more so knowing I've already survived coming up on 4 years with no cancer detected. But I doubt many would be willing to sign up for the mind F' that this has put on me not knowing when the next shoe will drop. You all have the benefit of the 4 years I've gone through where all testing has come up with nothing. I assure you going through it every year was no cake walk. Especially when my numbers keep climbing. My oncologist the last two times when I had a huge spike was definitely concerned. I've never seen or heard any concern in his voice over my situation until last December and this December.

I'm not making light of what I'm going to say. But there have been times where I wish something had been found so at least something can be done and I don't have the torture of everyday wondering if something is brewing that hasn't been detected yet. Trust me. Going through multiple years of this will screw with your head big time.

Of course. I absolutely understand, and did not intend to take your situation lightly. Take care XXXXX

Thank you for the replies and reassurance. It's been a month since the 80 cea and today it was 137. My mri didn't show anything. They now want to do exploratory surgery to look around and biopsy. Think it may be peritoneal area and may not be big/thick enough to show up on scans or "ovary remnant" area they want to get a better look at. I have ongoing bowel issues too. This waiting game and searching and wondering it awful.

That's good they are going to hunt for it! Find it and get rid of it so you can start the New Year off fresh and cancer free!!! Good Luck.
I requested exploratory surgery and it was denied for now. Maybe my cea has to go up more like yours.

My onc calls and says since I had mentioned my right leg had been hurting (without injury, no swelling & a blood clot was ruled out by fam dr) he decided to have me get a brain scan and bone scan just to be extra cautious knowing it would be so very unlikely to spread there. So I have the brain scan come back fine and the bone scan showed problems and that caused them to reread the MRI I had on Dec 14. And now this what it says --a crescent enhancing soft tissue wrapping around the posterior aspect of the right iliac bone through the sciatic foremen consistent with recurrent disease. Measures 4 cm anterior posterior 4 cm cranial caudal, and ranges in thickness from its medial aspect at 2cm to 1 cm lateral aspect as it wraps around the bone. Asymmetry to the adjacent bone marrow signals suggests there is bone invasion. So they canceled the exploratory surgery. And will talk about me at the tumor board. The surgeon thought next step might be needle biopsies but would have more plan after tumor board. He did try and hold out a little hope that it could be a benign tumor but with the rising cea it is worrisome.
I'm numb and it feels stupid to have hope that it could be benign. And dr google says horrible things about this. Anyone with bone mets?
The odds of me getting this at such a young age with no risk factors and then if it is bone mets is also rare. I swear I get all the impossible.
I know I've been living with cancer for 10 yrs and it may seem greedy to want more, but I do so much want more. My youngest is 11 yrs, my others are 14, 16, 18, 21, 26.

So sorry to hear this , but you keep on being greedy . My mum had 6 % survival stats back in 2009 . One thing that struck me about your Google search . You have one solitary site . It is probably hard to find a comparative study that does not have disease in other locations that might impact treatment outcomes . It’s how you respond to treatment that matters .

Take care and I hope you get a plan in place soon .
Stu