port? CEA Marker? other things we might hear?

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ppm20wife
ppm20wife Member Posts: 44
edited March 2014 in Colorectal Cancer #1
Hello everyone - Just in the few short weeks I have had to learn this stuff I have come to depend on being here as part of my routine....thank you. Obviously with my dh's new dx I am hearing all sorts of terms I think I understand and then I don't. Help? What is a port and what is it for? DH had a CEA Marker Test and it was high so they are retesting..What is that? What is considered high and why? Any other terms I might run into over the next few weeks...Oh, the cancer is on the right side right near the lymph nodes and is about the since of a plum, if he tests positive for Lynch's Syndrome they will take the whole colon and if negative about 50 percent...not sure about chemo yet...what are the chances for that? Please help with any info...here is a funny one - got every bit of info for surgery etc....relate it to dh, dh says to me, "Uh, what hospital will I be going to?" OOPS forgot to ask that question...well another phone call to put on the list....LOL

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  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Things you might hear...
    The CEA is just one of the ways that they can measure your health.
    See article:
    http://www.labtestsonline.org/understanding/analytes/cea/test.html
    It's based on many factors so one person may be 1.8 and another may be 10 or 100 or more. It's something that you need to talk to your doctors about, it's not good to compare with others all the time. Your normal may not be the same as someone else's.

    A port is something that is surgically places under the skin, usually upper chest area, and it allows the chemo to be administered. Another option is to use the veins on the hands/arms. I highly recommend a port. The chemo is caustic and cause veins to collapse and other problems. I've had mine for years and it was a no-brainer for me to have it done.

    Staging is another thing you will hear, colon cancer has 4 stages. What stage you are depends on if it's metastasized (spread to other organs).

    It sounds like chemo is in the future even if only for mop up after surgery. They want to make sure all of the cancer cells are killed. It only takes one cell to start it all over again.

    I wish you the best, I hope others pipe in here with things I didn't mention.
    -phil
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Hearing Things...
    Hi, there

    Phil has given you a good run down. There is so much to digest when you are new to it and am glad you are looking here. I started over 5 years ago and wish I had all of these nice folks as a resource, but I had to learn the hard way. Now, that I'm here I would he happy to provide some insight.

    Phil is right about the port - do go ahead and have that installed. It makes receiving the chemo so much easier on the body. I had a dose put into my hand and I went numb from my hand to my elbow. They started before I got my 2nd port in and it was my fault for accepting the chemo before I had that done. I had a port before and it was taken out. I thought I could get the first round through and then have the port put in. But what I found it and what Phil mentioned is the "caustic" nature of the chemo does do a number on the veins and such and that was what I was feeling. So, please do a port.

    And the CEA is the tumor marker used to measure for cancer activity in the liver. Just out of curiosity and if you don't mind telling me, what was your husband's CEA reading? You said it was high and it was being re-tested.

    What I can say about CEA is that clinically by definition:
    0-3 is considered Normal for a non smoker.
    3-6 is considered Normal for a smoker.
    Anything above that is "suspicious" of cancer activity. The higher the number, the more probable that is. I had a CEA level as high as 19.2 when I got out of liver surgery. Chemo knocked it down to 0.8 and last check was 1.5, which are still good numbers.

    Phil is right again about chemotherapy coming. You will probably hear the names Oxaliplatin, Xeloda, Avastin, etc. etc. You might hear 5fu and leucavorin.

    I am unfamiliar with Lynch's syndrome, whish I could help you there, but I just don't know it, so won't comment.

    You did not mention where the tumor was located. So on the surgery, they may be trying for a bowel resection. Depending on location, they might do a temporary or a permanent colostomy.
    Temporary colostomy re-routes the plumbing allowing an area to heal before they reverse the procedure. Permanent colostomy is removal of the rectum itself, which means they have to bring the intestines out through the abdoment and attach a pouch for waste removal. Doctors would be able to help you further on this topic.

    I probably left off things as well and as Phil mentioned other will chime in to fill in the blanks.

    Talk with your doctor, both you & husband stay talking as a team, and use the board for ideas on what to take to the doctor. You can learn more in a month than you can in 5 years.

    Best of luck to you and hope some of this will help...Craig
  • VickiCO
    VickiCO Member Posts: 917
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    "if he tests positive for
    "if he tests positive for Lynch's Syndrome they will take the whole colon and if negative about 50 percent.."

    You may have confused a couple of things. Lynch Syndrome is a genetic condition that shows whether or not your type of cancer is hereditary. There is a test that helps your offspring know if they will be prone to colon cancer.If you have the gene, your children each have a 50/50 chance of having it as well. If you don't have the gene, they can't have it either...it does not skip generations. Unless, of course, the other parent has the gene.

    They possibly said that if there are LYMPH NODES involved, they will take more colon.

    Phil and Craig covered everything else very well. Hang in there, we are here for any questions.

    Many hugs, Vicki
  • ppm20wife
    ppm20wife Member Posts: 44
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    VickiCO said:

    "if he tests positive for
    "if he tests positive for Lynch's Syndrome they will take the whole colon and if negative about 50 percent.."

    You may have confused a couple of things. Lynch Syndrome is a genetic condition that shows whether or not your type of cancer is hereditary. There is a test that helps your offspring know if they will be prone to colon cancer.If you have the gene, your children each have a 50/50 chance of having it as well. If you don't have the gene, they can't have it either...it does not skip generations. Unless, of course, the other parent has the gene.

    They possibly said that if there are LYMPH NODES involved, they will take more colon.

    Phil and Craig covered everything else very well. Hang in there, we are here for any questions.

    Many hugs, Vicki

    Thanks vicki but the dr.
    Thanks vicki but the dr. said that if he does test positive for the Lynch Syndrome they will take the whole out because of the chance of it coming back and then he told us about how our kids will have to be tested earlier...should I know something more? Thanks for your help
  • kimby
    kimby Member Posts: 797
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    Terminology Link
    Here is the link to a sticky on another website that really helps with some of the terms we use, especially when you're early into the process. Hope it helps and good luck!

    Kimby

    terms and abbrevs
  • VickiCO
    VickiCO Member Posts: 917
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    ppm20wife said:

    Thanks vicki but the dr.
    Thanks vicki but the dr. said that if he does test positive for the Lynch Syndrome they will take the whole out because of the chance of it coming back and then he told us about how our kids will have to be tested earlier...should I know something more? Thanks for your help

    Got it
    I didn't think of the recurrence factor. Yes, they recommend that your kids should be tested 10 years earlier than your husband's age when diagnosed (called DX for short). Example, if your hubby is 45, kids should be start colonoscopies at age 35 instead of the commonly recommended age 50.


    keep asking....Vicki
  • ppm20wife
    ppm20wife Member Posts: 44
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    kimby said:

    Terminology Link
    Here is the link to a sticky on another website that really helps with some of the terms we use, especially when you're early into the process. Hope it helps and good luck!

    Kimby

    terms and abbrevs

    Thanks so much - I am slowly
    Thanks so much - I am slowly starting to get this!