CEA up after liver resection

I had a liver resection 10/27/16. My CEA was 12 right before surgery and a month after it was 6.4. In December it went up to 69. I had not started chemo yet because we were giving me enough time to heal. I just has a pet scan a week ago and i get the results on Monday. I'm going absolutely crazy. Has anyone had a similar experience or any advice? Or positive thoughts or just anything... please

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited January 2017 #2
    Dear Friend,

    I know nothing will pacify your mind until you get some good news. Liver resection is a big surgery the disturbed your entire system. The PET scan should give give you a objective status of your health. Just keep busy till Monday to keep your mind occupied and I wish you the best possible outcome.

    Laz

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited January 2017 #3
    So sorry

    I know, as do most folks on this forum, how you are feeling right now.  

    When my CEA jumped, my mind started to run away with me, and I had to get it back under control. We all know that stress is not good for us at any time, let alone when we are fighting Cancer, which especially feeds on stress. 

    You must somehow tell yourself that no amount of worry will change what the Doctor tells you on Monday.  It's going to be good or bad news, regardless of how much you stress out. For me, I meditate and spend time in my speciual place. I prepare myself for the worst news, while praying for the best. 

    I pray that all will work out well, regardless of the news you recieve on Monday. Its a long haul battle, may you be blessed with the strength to see it through. 

    TRU

  • lostsolost
    lostsolost Member Posts: 21
    lp1964 said:

    Dear Friend,

    I know nothing will pacify your mind until you get some good news. Liver resection is a big surgery the disturbed your entire system. The PET scan should give give you a objective status of your health. Just keep busy till Monday to keep your mind occupied and I wish you the best possible outcome.

    Laz

    Thank you

    Thank you

  • lostsolost
    lostsolost Member Posts: 21
    Thank you. Its hard to talk

    Thank you. Its hard to talk to people about my fears because they don't know what its like. So i keep everything bottled up until i drive myself nuts. I'm just so scared

  • zx10guy
    zx10guy Member Posts: 273 Member
    Go to the scan facility and

    Go to the scan facility and ask for the radiology report.  Since a week has passed, the report is definitely ready.  No need to go through all the anxiety waiting.  If it's good news, you'll have your weekend back.  If it's bad news, at least you'll have time to process the results before going in to see your doctor.  Then you can ask direct/cogent questions about your situation and planned treatment.  Nothing is worse than dealing with the shock of getting bad news at the doctor's office and then have to coherently discuss anything logically.

    I'll be a broken record but I've said numerous times for most people scanxiety is an unnecessary stress to endure.  All it takes is the extra effort on your part to get the results early instead of waiting for the doctor to see you.  I've just passed 4 years since my initial diagnosis and I've never had to wait more than a day for my scan results.  If I remember correctly, only 2 of my follow up scans were the next day.  I did have my initial PET scan that took 2 days for me to find out the results but that was because Christmas was the day after.  Yes, I had the initial PET on Christmas Eve and the radiologist left the office early for th holidays despite a STAT order being placed.  Since then, I always schedule my scans in the morning and like clock work, I can get the report that afternoon.  This is for both CT with contrast and PET/CT (which I had one this past summer due to CEA spike.)

  • Scottyou
    Scottyou Member Posts: 9
    edited January 2017 #7
    Lostsolost

     

    Lostsolost,

     

     I am also sorry to hear about your spike in CEA and what it could possibly mean. I am not typically an open person and always have, and will continue to keep emotions to myself as not to impose on others. Developing cancer, going through treatments, and then recurrence a year later has been a game changer for me. Due to my nature, I tend to listen, support and mentor others better than taking it in myself. Things that have worked for me when I am down and I highly recommend for you is to take your mind off of it (easily said), go do something that you enjoy doing; go out to dinner with friends and have a good laugh;  go see a movie and/or a play and get absorbed; and depending where you live, take a walk on a palm swept beach with cocktail in hand and setting sun on the horizon.  In my case, I live in Minnesota and need to go home tonight and shovel snow in sub-zero temperatures. Not quite the same…    In any case, the intent is to get your mind off it, enjoy the weekend and deal with it on Monday.

     

     I do not participate in any type of online social media to interact with others. Since discovering this Cancer Survivors Network discussion board a few weeks ago, I have stepped out and been following and engaged with others who are currently, or have had, experiences such as mine. And in many cases much worse. I have developed a respect and deep appreciation for all those engaged in this site and greatly appreciate the support given to me and others.

     

    I wish you the best - Get your mind off it - Go out and have some fun - and keep us updated next Monday….

     

     Scott

     

  • Trubrit
    Trubrit Member Posts: 5,800 Member

    Thank you. Its hard to talk

    Thank you. Its hard to talk to people about my fears because they don't know what its like. So i keep everything bottled up until i drive myself nuts. I'm just so scared

    You have the forum now

    Come here as often as you like and we are here to listen.  We know your fear, and understand its effects. True, we all face it in our own ways, but just listening to others, can help a little.

    I will note that I do pick up my blood work results, and when my CEA jumped, I kinda wished I hadn't. Waiting for my Oncologist appointment seemed like forever. I knew the Cancer was back, yet I had to wait to hear what was going to be done about it. So, picking up your own results is like a two edged sword. Its great when the news is good, but its terrible when the news isn't so good. You have to decide what is right for you.  

    We will be waiting to hear what your news is; and don't worry, we don't expect you to rush to the forum and post. Take your time to celebrate or digest the news and come in your own good time. 

    TRU

  • lostsolost
    lostsolost Member Posts: 21
    Trubrit said:

    You have the forum now

    Come here as often as you like and we are here to listen.  We know your fear, and understand its effects. True, we all face it in our own ways, but just listening to others, can help a little.

    I will note that I do pick up my blood work results, and when my CEA jumped, I kinda wished I hadn't. Waiting for my Oncologist appointment seemed like forever. I knew the Cancer was back, yet I had to wait to hear what was going to be done about it. So, picking up your own results is like a two edged sword. Its great when the news is good, but its terrible when the news isn't so good. You have to decide what is right for you.  

    We will be waiting to hear what your news is; and don't worry, we don't expect you to rush to the forum and post. Take your time to celebrate or digest the news and come in your own good time. 

    TRU

    thank you

    I'm going today for bloodwork so I might as well wait to get all the results on Monday. I see my dr like a half hour before i have treatment and I just hope the news isn't that bad that i'll be able to stay for chemo 

  • lostsolost
    lostsolost Member Posts: 21
    zx10guy said:

    Go to the scan facility and

    Go to the scan facility and ask for the radiology report.  Since a week has passed, the report is definitely ready.  No need to go through all the anxiety waiting.  If it's good news, you'll have your weekend back.  If it's bad news, at least you'll have time to process the results before going in to see your doctor.  Then you can ask direct/cogent questions about your situation and planned treatment.  Nothing is worse than dealing with the shock of getting bad news at the doctor's office and then have to coherently discuss anything logically.

    I'll be a broken record but I've said numerous times for most people scanxiety is an unnecessary stress to endure.  All it takes is the extra effort on your part to get the results early instead of waiting for the doctor to see you.  I've just passed 4 years since my initial diagnosis and I've never had to wait more than a day for my scan results.  If I remember correctly, only 2 of my follow up scans were the next day.  I did have my initial PET scan that took 2 days for me to find out the results but that was because Christmas was the day after.  Yes, I had the initial PET on Christmas Eve and the radiologist left the office early for th holidays despite a STAT order being placed.  Since then, I always schedule my scans in the morning and like clock work, I can get the report that afternoon.  This is for both CT with contrast and PET/CT (which I had one this past summer due to CEA spike.)

    completely agree

    You're right. I am adding unnecessary stress by worrying. Whatever it is I can't change the results. Thank you

  • lostsolost
    lostsolost Member Posts: 21
    edited January 2017 #11
    Scottyou said:

    Lostsolost

     

    Lostsolost,

     

     I am also sorry to hear about your spike in CEA and what it could possibly mean. I am not typically an open person and always have, and will continue to keep emotions to myself as not to impose on others. Developing cancer, going through treatments, and then recurrence a year later has been a game changer for me. Due to my nature, I tend to listen, support and mentor others better than taking it in myself. Things that have worked for me when I am down and I highly recommend for you is to take your mind off of it (easily said), go do something that you enjoy doing; go out to dinner with friends and have a good laugh;  go see a movie and/or a play and get absorbed; and depending where you live, take a walk on a palm swept beach with cocktail in hand and setting sun on the horizon.  In my case, I live in Minnesota and need to go home tonight and shovel snow in sub-zero temperatures. Not quite the same…    In any case, the intent is to get your mind off it, enjoy the weekend and deal with it on Monday.

     

     I do not participate in any type of online social media to interact with others. Since discovering this Cancer Survivors Network discussion board a few weeks ago, I have stepped out and been following and engaged with others who are currently, or have had, experiences such as mine. And in many cases much worse. I have developed a respect and deep appreciation for all those engaged in this site and greatly appreciate the support given to me and others.

     

    I wish you the best - Get your mind off it - Go out and have some fun - and keep us updated next Monday….

     

     Scott

     

    Great advice

    Oh my goodness a cocktail in hand watching the sunset would be perfect. I actually asked my sister if i could watch my 3yr old nephew this weekend. He'll keep me plenty busy. Thank you

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited January 2017 #12
    I've had two liver resections

    I've had two liver resections after the colectomy. My CEA just kept bumping up post surgery. IT does mess with your mind, I could lose myself in work and keeping busy for periods of time, but those 3am wakeups really sucked. I took Xanax to be able to get back to sleep, and for appointments with the docs. If I had nothing to occupy me[or nothing sounded good to do] I walked, anywhere, everywhere, until I was so tired I could not feel anxious.  If I can wear myself enough, I lose fear and anger, simply because they take more effort than I'm willing to give. Maybe it's just me, but you might try it if nothing else works. Good luck to you..............................................Dave

  • blessed39
    blessed39 Member Posts: 90 Member
    lp1964 said:

    Dear Friend,

    I know nothing will pacify your mind until you get some good news. Liver resection is a big surgery the disturbed your entire system. The PET scan should give give you a objective status of your health. Just keep busy till Monday to keep your mind occupied and I wish you the best possible outcome.

    Laz

    Liver Resection

    Dear lostsolost. I know exactly how you feel. Please read my story on my blog entitled " How I Beat Stage Four Colon Cancer"

    There is always hope.  blessed39

     

  • lostsolost
    lostsolost Member Posts: 21
    Thank you

    I think I'll try the walking part. Hopefully I'll feel so tired that I'll be able to have at least fewer 3am wake ups. Those are pretty bad

  • lostsolost
    lostsolost Member Posts: 21
    edited January 2017 #15
    Scan results

    So my liver came back clear which is great but they did find something in my lungs. One 1.7x1.9 area but that the Radiologist is reading it as infectious/inflammatory but he's recommending a ct scan. The 2 smaller ones 7mm each they will follow with later scans. Hoping clearer view with the new scan

  • zx10guy
    zx10guy Member Posts: 273 Member

    Scan results

    So my liver came back clear which is great but they did find something in my lungs. One 1.7x1.9 area but that the Radiologist is reading it as infectious/inflammatory but he's recommending a ct scan. The 2 smaller ones 7mm each they will follow with later scans. Hoping clearer view with the new scan

    Did you get a copy of the

    Did you get a copy of the report?  What were the SUV values for the hot spots the Radiologist found?

  • dancer2
    dancer2 Member Posts: 49
    Can you have a liver

    Can you have a liver resection when you also have mets to the lungs, or so they say they are mets but have never been tested?

  • lostsolost
    lostsolost Member Posts: 21
    zx10guy said:

    Did you get a copy of the

    Did you get a copy of the report?  What were the SUV values for the hot spots the Radiologist found?

    i did. It says minor FDG

    i did. It says minor FDG uptake. Is that what i'm looking for?

  • lostsolost
    lostsolost Member Posts: 21
    dancer2 said:

    Can you have a liver

    Can you have a liver resection when you also have mets to the lungs, or so they say they are mets but have never been tested?

    I'm sorry I don't know. My

    I'm sorry I don't know. My liver resection was done before they found stuff in my lungs

  • dancer2
    dancer2 Member Posts: 49
    edited January 2017 #20
    Boy Dave........read your

    Boy Dave........read your profile and the last part of it was very inspiring and i liked what you put down.....I am going to LA soon for a consult to see if anyone will resect the two metastases that showed up on the last pt scan. Apparently, no one is suggesting it and leave me to believe it's because of the lung spots...and like you, I want them out though I know there is no cure for what we have but going by reports they seem to think I believe surgery will cure me! Never said such a thing because I have read to much to know better. Then it's back to my onco and lonsurf which I don't really want to take unless she comes up with something else. But there is another doc at ucla that sounds good also and who i would like to get a consult with also. To late for this trip however. Hopefully this doctor I will be seeing can at least give me an explanation of something. Supposedly the hospital does over a thousand resections a year but how many of those are due to colon cancer gone to liver and probably lungs I have no clue. No one likes to doctor jump but one has to listen to their instincts I believe....prayers to all!

    ps. I now have one lymph node that isnew in lower abdomen that came up with a over 5 suv rating. Near lumber3 of spine, which side i don't know for if it's on the left it could be coming from the area of where the colon mass was resected in the sigmoid area.   So do any of you push for surgery?