The Colon Club

Hi Guys,

I get three-monthly CEA tests and I've gone:
June '15 4.2
October '15 4.0
February '16 4.9

I didn't receive any contact from my team regarding the latest one, which although not a "whole number rise" is riiiight on the cusp.

The last few weeks I've been feeling a bit off and have had some fluctuating abdominal pain the last two weeks. I've been told not to worry about contacting my team unless pain lingers or increases over 3 weeks.

Next CEA isn't due until mid-May. However, I can go to the blood centre and get it checked early if I wish to.

Any thoughts on whether I should go to this length right now? I'm just trying to evaluate whether I am reading into things too much and making myself anxious haha. My surgical nurse said they'd call me if there is any issue come mid-May, and said as I had a clean CT in January, my pains are likely just digestive or scar tissue.

Thanks

EDIT: and yes I know I should just wait and see what the trend is rather than worrying about a moderate rise. Just feel the need to empty my brain about this, particularly as I'm nearing the 2.5 years since surgery mark.

Hi NZJay,

Please don't worry about it! The increase is really scientifically trivial. Also, the fact that you've been having some abdominal raises the question that you might have some inflammatory bowel thing going on, which in an of itself could be reflected in your CEA without being cancer-related in any way.

Warm best wishes to you,

Bev

Bev G wrote:Hi NZJay,

Please don't worry about it! The increase is really scientifically trivial. Also, the fact that you've been having some abdominal raises the question that you might have some inflammatory bowel thing going on, which in an of itself could be reflected in your CEA without being cancer-related in any way.

Warm best wishes to you,

Bev

Thanks Bev; that was exactly the kind of response I needed. I got promoted to manager of my work team a few days ago and health drama is the last thing I need right now.

Maybe I'll cut back on the coffee and see if that helps with the pain. I'm trying to remind myself for cancer to cause pain, surely it would be visible on scans.

And that's a really good point - I forgot general inflammation can spike CEA. Thanks again - I will try to calm down

I had a similar increase, and it dropped right back down after dental cleaning. If you have gum disease, get a CEA after cleaning and see what it is. I take meticulous care of my mouth now and have good CEA levels. Colon cancer is linked to gum disease, so it's a good idea to keep it under control.

That's exactly where I am having had a clear scan last week and have been reminded that the rise can be for a number of reasons, most likely inflammation. I like the advice to not worry and keep an eye on the trend.
All the very best to you.
Shân

Congratulations on the promotion NZ! Sounds like you are on a good path right now...no jinx's around the corner for you Are you taking/eating any probiotic type supplement for the gut flora, i.e. yogurt?

Best Wishes
BS

Chrisca - that's fascinating, thanks! I am due for dental visit, so I'll get checked out. I do currently have a broken molar so possibly have bad stuff happening in my mouth.

Shan - yeah, I felt a bit dumb making this post because I have given the same advice to people in the past re; CEA rises. But it's harder for the brain to process when it's your own result

BS - thanks! When I came back to work after surgery, I pushed hard for a management opportunity as I felt invigorated to progress my career, but they refused due to my unsure health status. Now I've been well for a couple of years, they're finally letting me take on the responsibility, and I've worked hard to get it.

I eat greek yoghurt daily, but I am unsure if that's enough? Is there a certain thing to look for? Thank you

Hi NZJay. I worry about small changes in my CEA level just like you do. Aside from the scans that dont happen too frequently, or physical symptoms that can take a long time to develop, we only have the CEA numbers to give us a sense of where we are with the cancer (whether we are still NED). If you are still doing heavy weight lifting, could that be a cause for your recent pain? You went through a lot with both the colectomy and the subsequent hernia surgery, maybe the pain has something to do with that. Also, even though you sound excited about your promotion, you may subconsciously have some stress and anxiety about your work performance, and maybe that could cause stomach pain and a slight rise in CEA. Try not to worry (easier said then done) and make sure you dont miss your 3 month CEA tests.

NZjay take heart, don't forget my tumor had also grown through my colon wall and attached itself to my stomach, wrapped around a rib and etc, and I am still here seven years after Dx. So far you are the only other survivor I have found with the same type of situation so we need to hang together and I am not looking at taking the dirt nap any time soon which means your stuck here with me. I would like to say relax but well that never has worked for me, it does get better though over time. I really think it is just hard to accept that things are good and we keep looking for the boogy man to jump out of the closet. At least I think that is the case for me.

I was thinking the colitis & inflammation. But I bet it is the tooth too. We had something go across our news that said certain bacterias that are found in your mouth, were found in some CC tumors. Haven't looked it up yet butt...
Anyway, I hope it is a big nothing!

Hi NZJay,

I see you and I are riding the same anxiety train this week. No further advice, but I do agree with Bev about the inflammatory bowel thing. Congrats on your promotion!

testing765 wrote:Hi NZJay. I worry about small changes in my CEA level just like you do. Aside from the scans that dont happen too frequently, or physical symptoms that can take a long time to develop, we only have the CEA numbers to give us a sense of where we are with the cancer (whether we are still NED). If you are still doing heavy weight lifting, could that be a cause for your recent pain? You went through a lot with both the colectomy and the subsequent hernia surgery, maybe the pain has something to do with that. Also, even though you sound excited about your promotion, you may subconsciously have some stress and anxiety about your work performance, and maybe that could cause stomach pain and a slight rise in CEA. Try not to worry (easier said then done) and make sure you dont miss your 3 month CEA tests.

Good reply which gave me some points to consider, thank you.
I do still work out quite heavily every second day, so this could indeed be a potential inflammation increaser.

I have another CEA in mid-May, so I will know more then. Although if my current pains don't fade soon I'll be off to hospital anyway ha

Thanks for all the supportive replies; my CEA stress has dropped a little and I'll persevere for my mid-May 3-monthly.

I am however continuing to struggle with this pain, but it's only been slightly under 2 weeks so not quite long enough to bother my team about.

Started as a fairly high-grade pain focused down my left abdomen, with some reflecting pain in my lower right abdomen above my hip. It felt very much like inflamed colon.

It faded, and three days later a new pain arose in the "reflective" spot. 7 days later this pain has not yet gone away. It's focused on a small area a couple of inches above my right hip bone and while it does not ache, it hurts sharply when I breathe in, to the touch, and with some movements. Lying on the side of my body in bed is also not possible for extended periods now.

Hilariously, I have no idea what is even in that part of my abdomen. No idea whether they left bowel in that area.

I've had pain in this area before, but not quite to this level or length of time. I suspected maybe partial blockage, so I took some bulk forming laxatives and while I did pass a lot of stool, the pain didn't go away. It's fairly manageable with basic painkillers so my plan is to grit it out and if it's still present at 3 weeks, I will contact my hospital team. If the pain increases significantly I'll have to go to ED though, because it's not far from intolerable-level at times.

Request:
Anyone who has had a partial blockage / adhesions, could you please give me a little rundown on how it felt and where the pain manifested?

Is it possible to have recurring partial blockages which cause pain?

NZ, I'm sorry to hear you're still having pain. Do you still have your appendix? If you push in on the spot it hurts, does it hurt more when you release pushing? Just a thought.

Hoping you feel better soon.

Bev

Bev G wrote:NZ, I'm sorry to hear you're still having pain. Do you still have your appendix? If you push in on the spot it hurts, does it hurt more when you release pushing? Just a thought.

Hoping you feel better soon.

Bev

Thanks Bev .
I do still have my appendix in. I googled just now and did the little test you mentioned; I can't really tell whether it peaks upon release, but the location is exactly where google says it would be, the pain is a similar type (ie tenderness, not spreading or cramping), and my abdomen feels firm in that area. Rather than hassling people on here for tips, I think I shall go see my GP after work