CEA count rising, getting results of CT Scan & thinking of declining treatments

AirborneMP
AirborneMP Member Posts: 19
in Anal Cancer #1

Thanks for adding me to the group.

I'm a 48yrs old male and have managed to keep working during this nightmare. I did radiation and chemotherapy prior to surgery where they removed part of my rectum and a tumor. 

We had a short time of no stress. I have rectal cancer and was told by two cancer centers that I was stage 3. I had the tumor removed in January and was told it seemed like a miracle because they got all the cancer out during surgery with no lymph nodes being infected. During the past couple of weeks my CEA blood level has been soaring from 1 to 17 in only 2 weeks. I was hoping it was an error but it’s not looking good for me. If the cancer has spread it means I went from stage 1 directly to stage 4.  

Also, I’m curious to see some times from survivors in this room to see how long they have been living with this disease with or without treatment. 

Last question, has anybody had an experience where the high CEA levels were wrong or were not relevant.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    AirborneMP

    Welcome here.  I'm sorry that you have had to go through treatment for rectal cancer.  I certainly understand your concerns about the elevated CEA level.  As for the possibility of it being an error, that is always possible.  I am an 8 1/2 year survivor of anal cancer, not rectal cancer, and so far, so good for me.  However, I am living with some long-term side effects of treatment, which was 6 weeks of radiation and 2 rounds of chemo.

    In your situation, I guess I would press my doctors for answers about what is causing the elevated CEA level, and ask about what scans or tests would be prudent at this point to determine the cause.  It is my understanding that CEA markers are not reliable for detecting some types of cancer, but for others, they can be quite reliable for others.

    I hope you and your doctors can sort all of this out and that you will get good news.  Please keep us posted.

    Martha

     

     

  • AirborneMP
    AirborneMP Member Posts: 19
    #3
    mp327 said:

    AirborneMP

    Welcome here.  I'm sorry that you have had to go through treatment for rectal cancer.  I certainly understand your concerns about the elevated CEA level.  As for the possibility of it being an error, that is always possible.  I am an 8 1/2 year survivor of anal cancer, not rectal cancer, and so far, so good for me.  However, I am living with some long-term side effects of treatment, which was 6 weeks of radiation and 2 rounds of chemo.

    In your situation, I guess I would press my doctors for answers about what is causing the elevated CEA level, and ask about what scans or tests would be prudent at this point to determine the cause.  It is my understanding that CEA markers are not reliable for detecting some types of cancer, but for others, they can be quite reliable for others.

    I hope you and your doctors can sort all of this out and that you will get good news.  Please keep us posted.

    Martha

     

     

    PET scan ordered

    i had a CT scan got the resu and it loa dismal. Thanks 

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    AirborneMP

    I'm very sorry to hear this.  Please keep us posted.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #5
    Airborne

    I'm so sorry your situation isn't looking good. I think you need to get as much information as possible regarding the treatment that would be proposed, and what the prognosis is with and without treatment. You are so young and sounds like all this bad news has been very sudden. I hope you have a supportive group of friends and family to help you decide what to do. Sometimes it's best to stay and fight and sometimes it's best to leave a sinking ship behind. I have teenage kids so personally I would lean towards doing what would prolong my life so I would have as much time as I could with them. Please keep us updated, this group is very supportive. 

  • AirborneMP
    AirborneMP Member Posts: 19
    #6
    CT Scan showed

    I got results of the CT scan today. I have enlarged para aortic lymph node (metasis cancer in his left aorta lymph node) and something suspicious on my bladder. Any advice? I have a PET scan on Friday

     

  • AirborneMP
    AirborneMP Member Posts: 19
    edited April 2017 #7
    Mollymaude said:

    Airborne

    I'm so sorry your situation isn't looking good. I think you need to get as much information as possible regarding the treatment that would be proposed, and what the prognosis is with and without treatment. You are so young and sounds like all this bad news has been very sudden. I hope you have a supportive group of friends and family to help you decide what to do. Sometimes it's best to stay and fight and sometimes it's best to leave a sinking ship behind. I have teenage kids so personally I would lean towards doing what would prolong my life so I would have as much time as I could with them. Please keep us updated, this group is very supportive. 

    CT Scan showed

    I got results of the CT scan today. I have enlarged para aortic lymph node (metasis cancer in his left aorta lymph node) and something suspicious on my bladder. Any advice? I have a PET scan on Friday

  • marijan
    marijan Member Posts: 4
    edited April 2017 #8
    airborne

    im sorry to hear that, .. while you were cancer free, have you been on a diet or were you avoid type of food?

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    AirborneMP said:

    CT Scan showed

    I got results of the CT scan today. I have enlarged para aortic lymph node (metasis cancer in his left aorta lymph node) and something suspicious on my bladder. Any advice? I have a PET scan on Friday

    AirborneMP

    I'm sorry the results were not all clear.  Please keep us posted.  I will be thinking all good thoughts for you.

  • AirborneMP
    AirborneMP Member Posts: 19
    edited April 2017 #10
    sherry123 said:

    Curious

    If you ask 10 doctors they may have conflict opinions. Symptoms for many disease probably overlapping. Have you seen doctors specialized at ulcer or other doctors?

    Doctors are all independant, you need to know yourself which doctor to see, the most difficult part can be the diagnosis. If you see cancer doctor, they only treat cancer. I think by law, doctors can be sued by rejecting to give a patient treatment, but won't be sued from making a mistake of the treatment. My suggestion is asking benefit and risks for all options and considering them carefully before make decision. The treatments maybe try and see, you need to make careful choice.

    I'm not a doctor, but I feel the hard part is doctors won't be 100% sure of the result of a treatment, that's why you have to make choice and sign for the treatments.

    Thanks

    I want to avoid the surgeries besides my ileostomy reversal on the 17th

  • tanda
    tanda Member Posts: 174 Member
    edited April 2017 #11
    AirborneMP said:

    Thanks

    I want to avoid the surgeries besides my ileostomy reversal on the 17th

    AirborneMP

    I hope today's PET scan doesn't show any more suspicious sites.  I wonder if you recieved my  previous message and a list of suggested colorectal sites.

    This list can offer wonderful support, but not alot of relevant information.  Although there are some treatment similarities (surgery,chemoradiation) colorectal cancer is approached in a different fashion.

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited April 2017 #12
    Airborne......

    Hi, I came across this post in the collorectal site dated April 11, 2013 regarding elevated CEA and thought it may be of interest to you.





    You are here



    Can bowel inflamation cause your cea to rise






    cheeks964's picture

    cheeks964

    Posts: 54
    Joined: Nov 2011

    Apr 10, 2013 - 6:57 pm





    Had a illiostomy reversal in jan 2013. Before surgery my cea was 2.1 in January . Now in April it is 5.7. Can inflamation for multiple trips to the bathroom cause the cea to rise? Has this happened to anyone???  I did have my cea go up during chemo and my onc said it was due to inflamation. Diarea from the chemo.

    Thank you

    carolyn

    PatchAdams

    Posts: 271
     Joined: Nov 2011
    Apr 11, 2013 - 8:20 am

    yes





    IBS, Diverticulitis, polyps, etc can cause an elevated CEA. 

    John23's picture

    John23

    Posts: 2141
     Joined: Jan 2007
    Apr 11, 2013 - 8:50 am





    1st….. It’s not a good idea to post your email address to any forum. If I were you, I would delete it ASAP (although once it’s “out there”, it’s a usually a done deal for the reception of a flood of spam and scam).

     

    2nd….. Most physicians don’t bother with CEA counts unless it’s part of the overall diagnostic process. The CEA by itself, doesn’t mean much. The CEA count can go up and down to reflect almost any inflammation or ailment; for many of us, CEA never reflected the incidence of cancer.

     

    By the way… your comment:
    “I did have my cea go up during chemo and my onc said it was due to inflamation.”

     

    Studies have proved (and there’s plenty of documentation to support the studies), that dying cancer cells can elevate the CEA count. Physicians have been cautioned –not- to stop chemotherapy due to a rise in CEA, since it can be proof that the chemicals are doing their job.

     

    The problem was noted, that many cancer patients lost the benefit of the chemotherapy they had been prescribed, due to the physician stopping the treatments with the assumption that it was “not working, when indeed it had been, and likely better than expected.

     

    But your oncologist is correct, that inflammation can cause a rise in CEA.

     

    Best wishes to you,

     

    John








  • sherry123
    sherry123 Member Posts: 26
    #13
    Curious

    If you ask 10 doctors they may have conflict opinions. Symptoms for many disease probably overlapping. Have you seen doctors specialized at ulcer or other doctors?

    Doctors are all independant, you need to know yourself which doctor to see, the most difficult part can be the diagnosis. If you see cancer doctor, they only treat cancer. I think by law, doctors can be sued by rejecting to give a patient treatment, but won't be sued from making a mistake of the treatment. My suggestion is asking benefit and risks for all options and considering them carefully before make decision. The treatments maybe try and see, you need to make careful choice.

    I'm not a doctor, but I feel the hard part is doctors won't be 100% sure of the result of a treatment, that's why you have to make choice and sign for the treatments.

  • sherry123
    sherry123 Member Posts: 26
    edited April 2017 #14
    AirborneMP said:

    Thanks

    I want to avoid the surgeries besides my ileostomy reversal on the 17th

    Stress itself causing many unknown disease, that's why doctors alway ask you take good rest and good diet when sick. Life style change like moving to a new city can cause disease for some people but not others. Treatment itself may also give you stress, worry of disease may also causing problem. 

    Sometimes good care is more important to get over the disease, or get it cured. Hopefully you get cured eventually.

    Patients don't have medical knowledge, but doctors don't know patients' life, so there's always possibility something overlooked. You need to let doctors knows your habits or change that may cause the disease, to help his diagnosis.

     

     

  • sherry123
    sherry123 Member Posts: 26
    #15
    AirborneMP said:

    Thanks

    I want to avoid the surgeries besides my ileostomy reversal on the 17th

    Hope you gettiing better

    I know many medicines used in the past are proved to be poision now, I think doctors just haven't found safer medication for cancer yet. But there're many cancer survors out there maybe they're more tolerant to the side effect, happier or has better care.

  • AirborneMP
    AirborneMP Member Posts: 19
    #16
    sherry123 said:

    Curious

    If you ask 10 doctors they may have conflict opinions. Symptoms for many disease probably overlapping. Have you seen doctors specialized at ulcer or other doctors?

    Doctors are all independant, you need to know yourself which doctor to see, the most difficult part can be the diagnosis. If you see cancer doctor, they only treat cancer. I think by law, doctors can be sued by rejecting to give a patient treatment, but won't be sued from making a mistake of the treatment. My suggestion is asking benefit and risks for all options and considering them carefully before make decision. The treatments maybe try and see, you need to make careful choice.

    I'm not a doctor, but I feel the hard part is doctors won't be 100% sure of the result of a treatment, that's why you have to make choice and sign for the treatments.

    Sitting and waiting 

  • AirborneMP
    AirborneMP Member Posts: 19
    edited April 2017 #17
    marijan said:

    airborne

    im sorry to hear that, .. while you were cancer free, have you been on a diet or were you avoid type of food?

    I have been eating organic for years

    also avoid processed sugar and high fructose corn syrup 

  • AirborneMP
    AirborneMP Member Posts: 19
    #18
    tanda said:

    AirborneMP

    I hope today's PET scan doesn't show any more suspicious sites.  I wonder if you recieved my  previous message and a list of suggested colorectal sites.

    This list can offer wonderful support, but not alot of relevant information.  Although there are some treatment similarities (surgery,chemoradiation) colorectal cancer is approached in a different fashion.

     

    Thanks for the information

    I'm researching, ty

  • AirborneMP
    AirborneMP Member Posts: 19
    edited April 2017 #19
    sherry123 said:

    Stress itself causing many unknown disease, that's why doctors alway ask you take good rest and good diet when sick. Life style change like moving to a new city can cause disease for some people but not others. Treatment itself may also give you stress, worry of disease may also causing problem. 

    Sometimes good care is more important to get over the disease, or get it cured. Hopefully you get cured eventually.

    Patients don't have medical knowledge, but doctors don't know patients' life, so there's always possibility something overlooked. You need to let doctors knows your habits or change that may cause the disease, to help his diagnosis.

     

     

    I have definitely schooled myself

    I try to stay relaxed and tryvto gain as much knowledge as I can. Thanks 

  • AirborneMP
    AirborneMP Member Posts: 19
    #20
    Thanks

    Waiting for PET scan results 

  • mysweetheartrusty
    mysweetheartrusty Member Posts: 19
    edited June 2017 #21
    eihtak said:

    Airborne......

    Hi, I came across this post in the collorectal site dated April 11, 2013 regarding elevated CEA and thought it may be of interest to you.





    You are here



    Can bowel inflamation cause your cea to rise






    cheeks964's picture

    cheeks964

    Posts: 54
    Joined: Nov 2011

    Apr 10, 2013 - 6:57 pm





    Had a illiostomy reversal in jan 2013. Before surgery my cea was 2.1 in January . Now in April it is 5.7. Can inflamation for multiple trips to the bathroom cause the cea to rise? Has this happened to anyone???  I did have my cea go up during chemo and my onc said it was due to inflamation. Diarea from the chemo.

    Thank you

    carolyn

    PatchAdams

    Posts: 271
     Joined: Nov 2011
    Apr 11, 2013 - 8:20 am

    yes





    IBS, Diverticulitis, polyps, etc can cause an elevated CEA. 

    John23's picture

    John23

    Posts: 2141
     Joined: Jan 2007
    Apr 11, 2013 - 8:50 am





    1st….. It’s not a good idea to post your email address to any forum. If I were you, I would delete it ASAP (although once it’s “out there”, it’s a usually a done deal for the reception of a flood of spam and scam).

     

    2nd….. Most physicians don’t bother with CEA counts unless it’s part of the overall diagnostic process. The CEA by itself, doesn’t mean much. The CEA count can go up and down to reflect almost any inflammation or ailment; for many of us, CEA never reflected the incidence of cancer.

     

    By the way… your comment:
    “I did have my cea go up during chemo and my onc said it was due to inflamation.”

     

    Studies have proved (and there’s plenty of documentation to support the studies), that dying cancer cells can elevate the CEA count. Physicians have been cautioned –not- to stop chemotherapy due to a rise in CEA, since it can be proof that the chemicals are doing their job.

     

    The problem was noted, that many cancer patients lost the benefit of the chemotherapy they had been prescribed, due to the physician stopping the treatments with the assumption that it was “not working, when indeed it had been, and likely better than expected.

     

    But your oncologist is correct, that inflammation can cause a rise in CEA.

     

    Best wishes to you,

     

    John








    thank you eihtak

    The report you posted was what I was reasearching. Thank you so much! my husband had a CEA of "2" (AWESOME) After a hepatic lobectomy and Before his colostomy reversal.  We were a bit unnerved to learn it had risen to a CEA of 19 three weeks after the colostomy reversal and then  to 40 four weeks after. Now with three rounds of chemo it is down  to 36. It seemed like a very high spike in s short amount of time? The 2 was in March and 40 in June. Surgery in early April. I am prepared for the worst, but I would really like to think it was only caused by the surgery.

Discussion Boards