NED Again

kerry
kerry Member Posts: 1,313 Member
edited March 2014 in Colorectal Cancer #1
Hi Everyone,

I just returned from MD Anderson Cancer Center in Houston, Texas and my CT Scan came back with good results. NED!!

It is always so nerve wracking to go through the scans, tests and then wait for the results, but I made it again. I am scheduled for my next scan in 9 weeks.

I was so fortunate to meet another fellow "Semi-Colon" while in Houston. Jana (jana11) and I got together the other afternoon and had a wonderful visit. We tood a "photo" and I have posted it on my website in my gallery. Jana, you are wonderful, and I so enjoyed visiting with you.

One question I have for you - my CEA has gone up from last CT Scan. From 2.7 to 3.3. My onc. says it could be caused by other things such as infections, etc. and not to worry since my scan came back NED.

Feedback would be welcome - How many of you have NED scans and what is your CEA?

Yes, I know CEA doesn't always mean anything significant, but I am a perfectionist and when I have a scan of NED I want my CEA to be 0!!

Blessings to you all.

Kerry

Comments

  • nanuk
    nanuk Member Posts: 1,358 Member
    #2
    I hate all the "iffy" terms used in the diagnosis / tx of cancer..I guess they can always say "there was no evidence at the time..."
    The CEA is supposed to be more accurate if it was a reliable tumor marker before surgery-(did u have surgery?) I only know that a rise in my CEA in the past has been an accurate indicator that the stuff is growing again..but there are many here who have CEAs in orbit and no cancer-go figure.. Bud
  • kerry
    kerry Member Posts: 1,313 Member
    #3
    nanuk said:

    I hate all the "iffy" terms used in the diagnosis / tx of cancer..I guess they can always say "there was no evidence at the time..."
    The CEA is supposed to be more accurate if it was a reliable tumor marker before surgery-(did u have surgery?) I only know that a rise in my CEA in the past has been an accurate indicator that the stuff is growing again..but there are many here who have CEAs in orbit and no cancer-go figure.. Bud

    Bud,

    You are SOOOOOOO right. My doctors in San Antonio never got a CEA baseline before my surgery, so I have no idea how to judge my CEA. I got my first CEA report after surgery which was 1.5. It has risen ever since over the last 3 years. I had a recurrance in November '04 and at that time it was 3.7, then after chemo it went to 2.4 and now to 3.3 and my CT scan is NED. Go figure!!! It is enough to drive a person crazy.

    Kerry
  • Reini
    Reini Member Posts: 22 Member
    #4
    Great news Kerry!
    My husband's oncologist said that she never bases cancer recurrence or treatment on CEA markers. SHe has seen it many a time not to mean anything. She said that the ct scans and the pet scans were the best form of surveillance,
    Best wishes,
    Belinda, Reini and Mia Grace
  • goldfinch
    goldfinch Member Posts: 735
    #5
    Don't have any helpfor you with regards to the CEA, but......
    YAYYYY for you for being NED!
    Mary
  • bsrules
    bsrules Member Posts: 296
    #6
    Kerry,

    That is GREAT NEWS!!!!!! I am so happy for you!!!!! I love to hear when you guys keep kicking the butt off of this Monster!!!! Bob kicked it hard but got tired. So to hear you guys winning the battle helps me alot!!!! Keep up the good work!!!!!

    Thank You for the picture!!! It feels good being included!!! Thank You for being there for me!!!

    Have a wonderful day!!!!!

    Love Always!!!!

    Sue
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #7
    bsrules said:

    Kerry,

    That is GREAT NEWS!!!!!! I am so happy for you!!!!! I love to hear when you guys keep kicking the butt off of this Monster!!!! Bob kicked it hard but got tired. So to hear you guys winning the battle helps me alot!!!! Keep up the good work!!!!!

    Thank You for the picture!!! It feels good being included!!! Thank You for being there for me!!!

    Have a wonderful day!!!!!

    Love Always!!!!

    Sue

    Congratulations sweetie.....I just sent you an email. I concur that Jana is a "doll". I can also admit that when I wrote that Jen made me suffer........he! he!
    My CEA Kerry was 3 after I finished chemo. I was not told what it was before surgery or chemo. In 12 months it has gone up to 4 but my doc does not seem too concerned. She said that my scans are keeping check of things and a colonoscopy in the next few months will also be an indicator. The other thing is that because I still smoke(tsk! tsk!) she said my levels would possibly give a higher reading. You'll be fine babe......ah feel it in me water! lol!
    love yah, Ross n Jen

    ps.........struth....you're lookin good gal!!!!!!!
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    Congratulations on the CT scan! NED NED! Yea!

    I am one of those people whose CEA was never elevated, even at diagnosis before surgery. But, my understanding is that a rise in CEA might be an indication that one should have further investigations (such as CT) -- and you have already done that! And your next one is scheduled.

    You are right that the testing process is extremely nerve-wracking. But it sounds to me like you and your doctors are doing everything exactly as you should...
    Best,
    Tara
  • taunya
    taunya Member Posts: 390 Member
    #9
    Kerry,
    I don't know about the cea. From what I understand anyhting under 5 is considered "normal". I am so happy about your clean scan! Great news!!!!!!!!
    Here's to many more of these!
    Taunya
  • nettie4
    nettie4 Member Posts: 145
    #10
    kerry i am so happy to hear that news for you. i can imagine the trip home was such a relief to be bringing good news.

    nettie
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #11
    congratulations on NED. Isn't that wonderful.

    Maureen
  • HowardJ
    HowardJ Member Posts: 474
    #12
    Congratulations on the NED! As for the CEA anything under 5 is normal (apparently everyone produces it at a low level anyway...cancer cells produce more of it and secrete it into the blood). I think it can raise a bit in other indications. My surgeon also failed to get a presurgery CEA (his assistant who completed the pre op forms was not the sharpest pencil in the box).
    Howard
  • jana11
    jana11 Member Posts: 705
    #13
    Yahoo... I was wondering about you, and didn't get a chance to check the site until now. It was so nice meeting you and your daughter. You are wonderful too!

    Congrats on the NED. I agree with the onc.... try not to worry and just get it checked again with the next labs. Personally, my CEA was never elevated.

    Stay well. jana
  • Btrcup
    Btrcup Member Posts: 286
    #14
    Congrats Kerry! Don't know if I told you this, but my daughters name is Keri (short for Kerilyn).

    Linda
  • hillby
    hillby Member Posts: 31
    #15
    YEAH!!!!!!!

    Congratulations just seems like too simple of a word to explain how incredible your victory is!! But CONGRATULATIONS!!!!!!

    You are an inspiration to us all!!

    Hilary
  • rejoyous
    rejoyous Member Posts: 259
    #16
    Big congratulations, Kerry! This is my favorite kind of posting to read. Thank you for letting us know your good news.

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