need reassurance and ideas

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charelaine
charelaine Member Posts: 36
edited March 2014 in Colorectal Cancer #1
I am a 33 year old woman who was diagnosed with colon cancer 4 years ago. I have been extremely lucky all the way around. When diagnosed, I was stage IIIC with 8 out of 12 lymph nodes positive. I did not have mets. I had surgery, a colostomy, 6 months of FOLFOX, and 6 weeks radiation. Then I had a hysterectomy and a colostomy reversal, and I have been GREAT since I got back on my feet.

I went to the doctor yeaterday for a six month checkup. She called last night and asked me to come in for a CT because my CEA is at 10. I know that sounds low, but it is up from 1.7, and the CEA at diagnosis was 5.5. Six months ago it was 1.7.

I do also have yearly colonoscopies, and have polyps removed every other time, at least. In November, I had 2 polyps removed. They were adenoma(?) kind of polyps.

What should I be thinking? You know I am worrying, but what other things can make CEA go up? I have been cughing a lot lately too.

What do you think? Be honest. I really want to hear all possibilities.

Comments

  • jmaddox915
    jmaddox915 Member Posts: 80 Member
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    Try not to think the worst.
    Try not to think the worst. I know it is easy to say and hard to do but you don't want to borrow trouble and stress yourself out.

    Since being dx with stage IV colon cancer, my best defense has been to lay my worries and fears at the Lord's feet and ask for strength and patience. I actually had to do this today as I had my scans to see where I stand and will not get results until Monday.

    I know this is not exactly an answer to your question but I wanted to reach out and hopefully offer some peace of mind.
  • charelaine
    charelaine Member Posts: 36
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    Try not to think the worst.
    Try not to think the worst. I know it is easy to say and hard to do but you don't want to borrow trouble and stress yourself out.

    Since being dx with stage IV colon cancer, my best defense has been to lay my worries and fears at the Lord's feet and ask for strength and patience. I actually had to do this today as I had my scans to see where I stand and will not get results until Monday.

    I know this is not exactly an answer to your question but I wanted to reach out and hopefully offer some peace of mind.

    Thank you
    Thank you for reaching out. I haven't felt like I do now in a long time. I really am worrying and I really am trying not to.

    Could mono or an infection cause a rise in CEA?

    I will be having a scan tomorrow, and I guess you and I will both be waiting to hear back on Monday. Good luck to you on Monday.
  • lesvanb
    lesvanb Member Posts: 905
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    I agree with not thinking the worst
    and yes that's hard to do. I sat in my doctor's office this morning waiting for scan results and he was almost an hour late. Lots of opportunity to let the imagination run wild. I kept remembering that he has always been straight with me and has not been a cause of undue worry. I'm sure your doctor will do their best with you. Keep on breathing.

    all the best, Leslie
  • John23
    John23 Member Posts: 2,122 Member
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    CEA


    The reason they're having you get a CT scan, is to rule out
    tumors. CEA can go up/down and in between; it's just not
    a great tool for anything but causing you to worry.

    They have to weigh a CEA level with other markers, and when
    other markers aren't present, or are normal, the cea doesn't
    mean much. It's like having a high white blood cell count with
    no other out-of-normal readings, it can be due to anything..

    So relax and enjoy the weekend, get the scans next week,
    and then you can go back to relaxing.

    Good health!


    John
  • geotina
    geotina Member Posts: 2,111 Member
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    CEA
    Now don't go borrowing trouble. It might be something it might not. If it is something, you have caught it very early. Your doctor is being vigilant by jumping on something that looks odd. I won't tell you not to worry because that is impossible. Best of luck and don't forget to come back and let us know what is going on. No go have a couple of glasses of wine. Take care - Tina
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Praying for good results
    I'll be praying for great results on the scan. In the meantime, I know it's hard to do, but try to relax and do things that make you feel happy and relaxed this weekend.

    *hugs*
    Gail
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
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    Actually, that sounds high.
    Actually, that sounds high. Anything over 3 for a non smoker is 'high' BUT we've read about labs using new criteria and also I saw a list of things that can raise the CEA level yet not be cancer.

    Benign conditions which can elevate CEA include smoking, infections, inflammatory bowel disease, pancreatitis, cirrhosis of the liver, and some benign tumors in the same organs in which an elevated CEA indicates cancer. Peptic ulcer, ulcerative colitis, rectal polyps, emphysema, and benign breast disease. YES... Mono certainly could raise your CEA! Mono can cause problems with the spleen, etc.

    Four years is a long time to go with no recurrences so let's just hope this is a lab error or something simple. PLEASE come back and let us know. People here really do care!
  • kimby
    kimby Member Posts: 797
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    CEA
    Breathe. It will be ok. I know that's easy to say and you can't 'not worry'. At least I can't. CEA can be affected by so much, even a cold. Be very grateful that you have an aggressive onc. A scan will ease your mind and make you feel much better and more secure.

    Please update us when you have news.

    Outwit. Outplay. Outlast.

    Kimby
  • sfmarie
    sfmarie Member Posts: 602
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    I think it is still low
    And for a precaution, she is ordering extra tests. But it sounds as if you are fine, I don't put too much into numbers.
  • jams67
    jams67 Member Posts: 925 Member
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    Hang in there
    4 years is a long time, and that @#!$#% cancer had better be gone. The CEA is the most unreliable marker that they have and only one small part of a big picture. Stay busy so that you don't have time to think so much. Go to a movie, out to eat, plan and have a party, go bowling, skating, etc. Don't come to this site again until you get your results. I love everyone here, but you don't need to dwell on negatives. Get out and LIVE LIFE!!!
    Jo Ann
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    No answers but positive wishes
    I can well understand your concerns, after all, once one has cancer diagnosis, the concerns over every bit of medical information intensifies...no matter how long ago it was.

    Take one day at a time...when the worries come to the forefront, push them back with some good thoughts...not easy I know, but gotta work at it.

    Wishing you only good news from the scan.

    Marie
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Hi Charelaine
    As others said, the CEA is not the most reliable test. Many things can affect the levels. Still, when you hear that it's risen it's not what you want to hear unless it's followed by "and this is normal..."

    It does sound to me like they are being trying to find out why it went up as soon as they can. That's a good sign. It sounds like you've been doing all of the right things you need to do.
    -phil
  • charelaine
    charelaine Member Posts: 36
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    Thanks... I took your advice and stayed away. Now- the update
    I got the results from my CT today. I had the scan on Saturday. The onc called before the final report was written, so I can't give precise detail, but here is what she said. There is an area in my liver that is concerning. I have always had cysts on my liver... this is different. She is presenting the scan to the tumor board at Vanderbilt tomorrow and will call back in the morning.

    Well, I have an answer. If they can do surgery, there is a decent survival rate even after liver mets, right? I am still on edge, and will be until I hear back tomorrow, but I am ready to have a plan.

    If you pray, please pray for me. Thanks again.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Thanks... I took your advice and stayed away. Now- the update
    I got the results from my CT today. I had the scan on Saturday. The onc called before the final report was written, so I can't give precise detail, but here is what she said. There is an area in my liver that is concerning. I have always had cysts on my liver... this is different. She is presenting the scan to the tumor board at Vanderbilt tomorrow and will call back in the morning.

    Well, I have an answer. If they can do surgery, there is a decent survival rate even after liver mets, right? I am still on edge, and will be until I hear back tomorrow, but I am ready to have a plan.

    If you pray, please pray for me. Thanks again.

    Hi Charelaine,
    Thanks for

    Hi Charelaine,

    Thanks for updating us. I am sorry to hear there is concern regarding your liver. I hope that it is not liver mets, but if it is, there are lots of ways to treat them,including surgery. Some of these procedures were not even used until the last few years + have great success. I have 4 liver mets which have only been treated with chemo (I am on folfiri + avastin) + the mets are shrinking. Try to take some deep breaths + hope + pray for good results from the tumour board. I am thinking of you!
  • lesvanb
    lesvanb Member Posts: 905
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    Thanks... I took your advice and stayed away. Now- the update
    I got the results from my CT today. I had the scan on Saturday. The onc called before the final report was written, so I can't give precise detail, but here is what she said. There is an area in my liver that is concerning. I have always had cysts on my liver... this is different. She is presenting the scan to the tumor board at Vanderbilt tomorrow and will call back in the morning.

    Well, I have an answer. If they can do surgery, there is a decent survival rate even after liver mets, right? I am still on edge, and will be until I hear back tomorrow, but I am ready to have a plan.

    If you pray, please pray for me. Thanks again.

    liver surgery
    Hi Charelaine

    "If they can do surgery, there is a decent survival rate even after liver mets, right?"

    I was dx stage 4 May 08, one met to the liver, resectable at dx; NED after liver resection 10/08; still NED after CT scan 3/4/10. My doctors are pleased with my progress and think the "C" word is a decent possibility. There will be years of scans though but it is sweet to be alive and breathing now.

    all the best, Leslie
  • charelaine
    charelaine Member Posts: 36
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    another update
    I have another update today. My doctor called and said that when she presented to the tumor board, they decided that the liver was not concerning after all. Something about the contrast. Anyway, what they did see was several inflamed lymph nodes in my abdomen, in the retroperitoneal speace and near the aorta. I am scheduled for an endoscopic biopsy tomorrow and a PET scan Friday. If there are cancer cells in the nodes, we will do more chemo. That's all I know for now.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    another update
    I have another update today. My doctor called and said that when she presented to the tumor board, they decided that the liver was not concerning after all. Something about the contrast. Anyway, what they did see was several inflamed lymph nodes in my abdomen, in the retroperitoneal speace and near the aorta. I am scheduled for an endoscopic biopsy tomorrow and a PET scan Friday. If there are cancer cells in the nodes, we will do more chemo. That's all I know for now.

    Hi Charelaine,
    I am glad the

    Hi Charelaine,

    I am glad the liver did not concern the tumour board at all. Good luck regarding the lymph nodes + please let us know the results of the testing. Best wishes to you!
  • Crow71
    Crow71 Member Posts: 679 Member
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    AnneCan said:

    Hi Charelaine,
    I am glad the

    Hi Charelaine,

    I am glad the liver did not concern the tumour board at all. Good luck regarding the lymph nodes + please let us know the results of the testing. Best wishes to you!

    Hey Chareline – Good news
    Hey Chareline – Good news on the liver. I guess we will just have to wait and see about the rest. It sounds like you are staying calm and positive, and that you are prepared to do whatever you need to do. Keep up the positive thought. We're here for you.
    Roger
  • charelaine
    charelaine Member Posts: 36
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    Thanks again
    They were able to biopsy the lymph nodes today. There was some concern they would not be able to get to them endoscopically because of their location. I will hear something Friday. I will also have a PET scan Friday. I continue to hope for the best. They did say if there are cancer cells, there will be more chemo, and I assume it will NOT be FOLFOX, since I already did 6 months of that. I also think I remember them saying that once you have radiation you can't have it again. Does anyone know anything about that?
  • geotina
    geotina Member Posts: 2,111 Member
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    Thanks again
    They were able to biopsy the lymph nodes today. There was some concern they would not be able to get to them endoscopically because of their location. I will hear something Friday. I will also have a PET scan Friday. I continue to hope for the best. They did say if there are cancer cells, there will be more chemo, and I assume it will NOT be FOLFOX, since I already did 6 months of that. I also think I remember them saying that once you have radiation you can't have it again. Does anyone know anything about that?

    Charelaine
    You are at Vanderbuilt, I understand that is an excellent facility. Your oncologist seems to be really on top of things. There is a guy on the Colon Club that has had lots more Folfox than 6 months and when you did have it, it was quite a while ago. Radiation, I'm not sure but it seems to me people on the board have had radiation multiple times. My hubby has not had radiation so I'm no expert on that. But for now, don't get to ahead of things until you get this thing nailed down. I won't tell you not to worry or be afraid and to relax, that is impossible. Take it one day at a time and soon you will have your answers. Please come back and let us know what you find out. Wishing nothing but the best outcome for you. Tina