CEA is rising
I was diagnosed 10 months ago with colon cancer. I had a colectomy and they removed a 6.5 centimeter tumor that had partially obstructed my colon. They removed some of my colon including the tumor and 32 lymph nodes (originally I thought the number was 21 but after reading the report I found it was more) All lymph nodes were negative for any cancer. They said I was a Stage 2A. I was told they got everything was removed and would not need any chemo or radiation. My first CEA level before my surgery 16.8. After 2 months my CEA level was 3.5. Then 3 months later it was 3.3 I have been getting blood tests every three months because my hemoglobin was very low which they attributed to the tumor bleeding. So yesterday I had a blood test and my hemoglobin was just under normal. But my CEA has risen to 4.6. I don’t see the doctor until next week. I am very worried because it went from 3.3 to 4.6 in just over 3 months. I have read other entries on the forums where people have had CEA levels under 1. Mine has never been that low. So I am hoping that someone can tell me if they have had this experience? I am a non smoker by the way but I grew up in a home where a parent smoked every day. UPDATE: I saw my Oncologist today. He feels the best thing to do would to be a PET Scan. He ordered an Urgent one from mt skull to the tops of my thighs. They can’t get me in for the scan until July 1st. He said the number going up was a concern. He did mention that the CEA test can’t be used for everyone and if they don’t find anything he will know better how to react next time. He is one of those doctors that believes that different types of inflammation in the body can cause fluctuation in the CEA numbers. I had an Oncologist in a different hospital that told me only smoking and cancer make the numbers rise. I haven’t had any symptoms but I didn’t have any before I was diagnosed. Oh and he couldn’t find any swollen lymph nodes. I go back to the Oncologist on the 10th of July and will repeat all the blood work on the 3rd. So I will know my CEA levels on the 4th or fifth. Thank you to everyone who replied and I will update when I know something.
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I had a similar experience. Your current CEA level, I believe is in the high end of the normal range. But that depends on the labs Scale of what is the normal range. Your doctor will let you know if it’s concerning.
My CEA is different every time I have the test done.
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Thanks, I am hoping it will go down in 3 months when I am tested again. My doctor has never mentioned what is considered normal or given me a baseline. I guess that is the first question I will be asking him next week.
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Hi there, I would say that you are one of the "lucky ones" being 2A and not more severe. My wife's (diagnosed in 2019) CEA never went higher than 3.0 (even when she was diagnosed) and she is a stage 4 survivor and NED since December 2019. In her case, CEA is a meaningless metric for her but from time to time it fluctuated between 1.0 and 3.0. Small moves in the low single digits are often meaningless anyway - a small change in a small number is a huge percentage, but that's all. If $1 becomes $2, you've increased it by 100% but still not much to do with it.
Point is that a move from 3.3 to 4.6 should mean nothing. Obviously if it spikes to 6 or 19 then that's another story. Parents as a smoker I don't think is relevant from what I've been led to understand, so don't connect the two - you'll just makes yourself nuts about it! I hope you've recovered well from your surgery. The anxiety is the hardest part to shake, unfortunately. Good luck.
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Thank you for answering. I felt that I got off lightly and was indeed one of the lucky ones. I am the first one in many generations to be diagnosed with cancer. I have done as much research as possible but no being a doctor it sometimes hurts more than helps. But now I know that I need to ask my doctor more questions just for my own peace of mind. I am hoping it goes down with my next CEA test. I am wondering if I am giving the CEA test too much weight. That will definitely something I need to find out about. I am glad your wife is doing well.
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And sorry, I forgot to add, this does make me feel les anxious.
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The thing about researching this stuff and reading it on the web is that unless you want to read EVERYTHING on the web, then don't read ANYTHING. I quit my job for 3 years to take care of my wife when she was diagnosed at 39 years old (we had 3 younger kids at the time) and read and read and read non-stop and eventually I was able to filter through the stats, studies and learn which publications to trust, etc. A quick google of "CEA rising" won't give you anything you like, I promise you that.
And yes, CEA levels might be giving you too much anxiety on a stand alone basis. They are of course relevant but you can easily worry yourself to misery. I bet if you did a CEA test in 2 weeks, that it could be 10% lower, but just a full 0.046 - nothing right? You're lucky enough to have been stage 2A, you were "lucky" enough to be the first in generations to get cancer, but don't assume you're lucky enough to have a slight rise in CEA destroy the amazing progress you've made in just 10 months. Keep the surveillance scans as planned and keep asking questions to your doctor, other experts and anywhere else you trust as a source of information.
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Hello there.
Your fear is so understandable, and I bet there are few here, that have not experienced exactly what you are going through.
While I could tell you that a CEA of 4.6 is within normal range, I know for a fact that will not elevate your fear. I've been there, and nothing anyone can say, will help until I hear it from my Oncologist and further tests.
The key is to try not to let the fear run all over you and bring you down. That will not help the situation, if indeed you have something going on . When I faced the worst fears, I kept my head above water with meditation and lots of walking in the wilderness, things that worked for me. Find something that works for you. While the fear will not go away, it will not be in control.
When I had a recurrence eight months out from treatment, my CEA jumped from 3 to 13 and then above 20. They found a tumour growing in my liver, which I had ablated, with no follow-up chemo, that was NINE years ago. Yes, nine.
I know it is so normal to run straight to the worst scenario - I just did that with my latest Cancer scare, I KNEW it was a recurrence, but thankfully, I was wrong - and again I suggest making sure you don't let that fear consume you. I think Cancer loves fear, and it certainly loves stress.
And, don't worry about not getting a CEA level below 1.0 It is still relatively early days for that. You WILL get there. Make it a goal.
Keep us updated. We are here for you as you, soon, will be here for others.
Tru
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Thank you so much for your thoughtful answer. I know that 4.6 is in the normal range but I am concerned because it is rising. After my surgery my oncologist said they removed the tumor and found no further cancer, including 32 clear lymph nodes. When I asked about chemo he said there was nothing to chemo. So It was just a shock to see my numbers have gone up.
I have decide no matter what after I have my Oncologist appointment I am going to look into therapy to learn how to live with the anxiety that this has caused me.
Again, thank you for answering, it is helping me put things into perspective. I will update next week after I have spoken to my doctor.
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There are a lot of things that can elevate CEA. Within the last couple years mine went as high as 15. Last time they drew blood, it was 1.3. Which is all to say, you cannot fixate on CEA numbers as there are a lot of inflammatory processes that can elevate CEA that have nothing to do with metastasis.
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Hi there, my story won't alleviate your fear, as I had the same colectomy with 2-17 nodes involved, for a 3b staging. CEA was the biggest scare-ride on this cancer journey, it slowly rose months after the initial surgery until 2+ years after, with negative scans and biopsies until they said whatever's in your liver is growing and needs removal. 2+ years later, again that slow rising CEA got to near 18, I think, and away we went again to cut a single lesion out of my liver. After there was no chemo, just watching that dam*ned number. I've been watching that CEA go from 1.6 to 3, and back down again. [It's 1.8 now], 8 years later, and I still twitch when I get my blood panel, every six months. My point is you have to learn to deal with the fear, as you'll be watching results for a long while. CEA is a valid marker for me, but it means nothing to many here, and you really haven't established how accurate it is for you. In ten months/3 month intervals that's what , 4 tests? Even if it turns out to be accurate, learning to cope with the fears that come with this, as Tru and others have said, is its own necessity. Mindfulness, meditation, exercise, learning to be in the moment each day, are valuable ways to cope, and we will almost all cope with more scary stuff in our lives than just this, that's just life. As far as your path from here, you are in better shape than many with a 2a start, and no nodes involved. The CEA hasn't hit 5, and it still may not, or it may not be a valid indicator. Whatever happens, happens and all you can do is learn to deal with it, or be consumed by it. Take this time to find your strength and mental discipline, because that is the only part you can control. Hoping for your best outcome..............................Dave
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THANK YOU! No one has ever told me that. I have been told that it is just one thing the doctors use to determine your diagnosis. But I looked at my numbers and I was 16.8 before my surgery. Then it dropped to 3.5 and then 3.3. It was worrying that after 9 months my levels rose. I have decided I am not going to dwell on it until the doctor tells me if I need too. I appreciate you telling me about your levels.
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THANK YOU! No one has ever told me that. I have been told that it is just one thing the doctors use to determine your diagnosis. But I looked at my numbers and I was 16.8 before my surgery. Then it dropped to 3.5 and then 3.3. It was worrying that after 9 months my levels rose. I have decided I am not going to dwell on it until the doctor tells me if I need too. I appreciate you telling me about your levels.
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Hello.. I’m new here, but not new to cancer unfortunately. Everything you are all saying is comforting as my fear and anxiety have reached an all time high. I had chemo and surgery for t/2-t/3 colon cancer in 2019. All my tests have been clear until last month. My cea went from under 3, to 13. Pet scan says there’s a lesion on my liver that for years has been indeterminate, and too small to be anything. Now it is 1.8 cm, and after biopsy, is the colon cancer returning. Dr says surgery, and most likely 6 months of chemo. My oncologist is a nice person, but has nothing positive to say EVER. She says we won’t know for sure until after surgery. If there’s 1 node positive after the liver surgery, does that mean mandatory chemo?? I read about other treatments available. If they take the lesion out, and get it all, my hope is I will just be done. By the way, I developed an infection in my liver1 week after biopsy.. spent 3 days in hospital, now surgery waits for 4 weeks of antibiotics. Any advice would be a blessing as I’m scared, and anxious. Thank you everyone for sharing your stories… it’s brave, and very helpful.
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Hello Gram
Can I suggest you open a new thread, so that we can post our replies to you, personally, and not overtake this thread. Here is the link to the page where you can start your own thread
https://csn.cancer.org/categories/colorectal
If you need any assistance, just let us know.
Tru
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