High CEA, normal colonoscopy, need advise.(continuation)

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moganesi
Posts: 4
Joined: Tue Feb 11, 2020 7:40 pm

High CEA, normal colonoscopy, need advise.(continuation)

Postby moganesi » Sun Feb 16, 2020 5:44 pm

Hi guys, here is my story, I am 52 years old. Two years ago started feeling IBS symptoms, very strong and very sudden. MRI showed 0.7 cyst in my pancreas (with no definite enhancement) and several small cyst in my liver. Which I should monitor (by MRI) every year. Test for h-pylory was positive and it took me two rounds of antibiotics to eradicate it. My IBS symptoms become weaker but didn't go away. Since I was still complaining about my symptoms, in June of 2019 my doctor checked my CEA and it was 6.2 (I am no smoker). I was referred to colonoscopy, and it was negative not even polyp, but gastroenterologist said that it was full of mucus and I have colitis, and I have a Melanosis Coli which means that my colon is dark, and I use laxatives. (but I never used laxative.
My gastroenterologist think to have another colonoscopy in 3 years, in the meantime check CEA every 3 month and if my CEA is not getting higher and my next colonoscopy is clean, I should forget about high CEA and I will be on normal schedule for colonoscopy after that. My general doctor agrees with my gastroenterologist.

My question for you guys, is there anything else I could do to make sure I am not missing something important here? Any tests, procedures? Generally I trust doctors, but they are often overworked, and in my experience sometimes patients have a unique perspective on disease.
and if I have canser, I would like to catch it as early as possible.
Thank you.

Michael.

weisssoccermom
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Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: High CEA, normal colonoscopy, need advise.

Postby weisssoccermom » Sun Feb 16, 2020 6:17 pm

Hello Michael,
First of all, I want to reassure you that CEA can easily be influenced by inflammatory processes within the body. Now, that doesn't mean that a sprained ankle or a simple cold will raise one's CEA....both my surgeon and onc have debunked that. However, serious/widespread inflammation in the respiratory tract (which is why smokers tend to have higher CEA) or serious/widespread inflammation within the GI tract (yes, colitis and IBS symptoms would fall into that category) can and do raise an otherwise healthy person's CEA.

It sounds like your doctors are taking good care of you and watching you for any signs of potential problems so I would follow their advice and try not to worry about it. I have no idea if there is anything a person can do for colitis (it doesn't sound like you have Crohn's disease) to help with the inflammation. Getting your CEA checked every 3 months sounds like a very prudent course of action and should tell you if anything is awry. I know it's easy for me to be typing this and telling you to try and relax, but you've had the gold standard test for colorectal cancer (colonoscopy which was negative) so concentrate on your diet .....avoid things that seem to irritate your GI tract and get yourself checked again in 3 months.

Best of luck.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
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moganesi
Posts: 4
Joined: Tue Feb 11, 2020 7:40 pm

Re: High CEA, normal colonoscopy, need advise.

Postby moganesi » Sun Feb 16, 2020 7:07 pm

Thank you, weisssoccermom.

JJH
Posts: 292
Joined: Mon Apr 24, 2017 7:26 am

Re: High CEA, normal colonoscopy, need advise.

Postby JJH » Sun Feb 16, 2020 9:20 pm

moganesi wrote:... My question for you guys, is there anything else I could do to make sure I am not missing something important here? Any tests, procedures?

What I would do in your case is to add the H. pylori test to your periodic lab test schedule so that you can check whether it has flared up again and might require yet another antibiotic treatment for keeping it under control. Also, educate yourself about gut bacteria so that you can better manage your diet and eventually arrive at a long-term balance of good vs. bad bacteria in your diet.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=54284&p=430681#p430681
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: High CEA, normal colonoscopy, need advise.

Postby zx10guy » Mon Feb 17, 2020 8:04 am

Not much more to add from the others.

I too had H. Pylori and was treated. Not sure if the MRI you had was just focused on your upper abdomen. But you may want to request a CT scan of your chest down to your pelvis. Other than that, your GI doc has a good plan laid out for you.

In regards to your CEA, docs don't treat on CEA numbers alone unless there is corresponding evidence of something such as positive scan results. To put your mind at ease, for what ever reason, I've always been on the higher side with my CEA just above the normal range. My normal baseline was in the 5s and I'm not a smoker. Something has happened to me where my CEA has jumped significantly. Since March of 2017 till the end of 2018 (about 2 years), my CEA has bounced between 11 and 20. I've had all manners of diagnostics/scans with nothing found. Then during 2019, my CEA started climbing again. First it was 26, then 28.6, and then 52.4 which triggered all sorts of alarm bells. I've had 3 different scans (CT, MRI, and PET) with nothing found in any of them. A retest of my CEA was done in December after the last result in October. It came back at 44.4. So at least it's not continuing to climb. My doc has thrown up his hands as he doesn't know what is causing it. Thinks it might be stress related as I've been through a ton of it such as a divorce and child custody issues. So this makes 3 years I've been dealing with a really high and abnormal CEA with nothing found.

One other thing I just remembered as I was typing the above, you can opt for one other thing. Liquid biopsy. It's been gaining a lot of attention as another diagnostic tool and there's been talk that it may eventually replace CEA as a better blood test. Liquid biopsies go about detecting DNA in your blood which have cancerous characteristics. If you get a negative result, there is a pretty high confidence that you're totally in the clear. There is still some discussion about what a positive result will mean as far as cancer prediction and whether to begin proactive chemo treatment or not.

moganesi
Posts: 4
Joined: Tue Feb 11, 2020 7:40 pm

Re: High CEA, normal colonoscopy, need advise.

Postby moganesi » Mon Feb 17, 2020 2:18 pm

Thank you very much zx10guy! Your comment was very reassuring)))

moganesi
Posts: 4
Joined: Tue Feb 11, 2020 7:40 pm

High CEA, normal colonoscopy, need advise.(continuation)

Postby moganesi » Sun Aug 09, 2020 2:40 pm

Hi everybody, this is continuation of my post which I posted in Feb.:
http://coloncancersupport.colonclub.com ... =1&t=64011
I am sorry for being such hypochondriac, but here is the continuation of my story. My June (2020) CEA jumped from 6.2 (in June of 2019) to 6.5. I retook it in Aug and on Friday my result was 7.9. Only in 2 month it jumped 1.4 points!!! I feel fine. Don't have any symptoms. Since I had colonoscopy year ago, and MRI of my 0.7 cyst in my pancreas in March of 2020, my doctor looks puzzled. He suggested new colonoscopy or to wait more and retake. I think he doesn't know what to do next. At this point I don't want sit and watch how my CEA numbers are claiming, may be you guys will have suggestions what else can I do? My doctor is accommodive, and if I come with a suggestion he will usually comply. I am in HMO and changing primary care doctor will take me a month, and I don't know what kind of doctor will be my new doctor. With my current doctor we have 15 years relationship and I generally like him.
Thank you.
Michael.


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