Advice, please

Cathleen Mary
Cathleen Mary Member Posts: 827 Member
in Colorectal Cancer #1

 

I hesitated to post this because it feels so minor compared to what others are dealing with everyday...but I could use some advice or reassurance.

Quick summary: I was diagnosed in August of 2009 with stage 2 colon ca .

pT3cNOMX.

 Moderately differentiated.

13 lymph nodes taken and negative.

Perineural invasion present.

Obstructed at time of surgery.

CEA 7.5 

No chemo

Family History: father died of colon ca, 3 maternal aunts died of colon ca. 2 cousins presently in treatment. No genetic marker found.

My CEA returned to 1.7 almost immediately post op. Has trended slowly upward ever since.  The last drawn were 5.6,  4.3, and 5.0 today.  It has been my understanding that if CEA is elevated at time of surgery and returns to normal that is indicative that it is a good marker for you.

colonscopy 1 yr ago. 2 polyps

PET 6 mos ago clean. Have been NED since surgery. 

Concern: see oncologist ( who I like and trust) on Thursday. Reading through my family members history, CEA was a good indicator. Most started out stage 2 and recurred. What is reasonable for me to request? I feel onc is going to dismiss CEA and though he may be right, ( and I hope he is) I am hesitant to do so. I am coming up on 5 yrs....follow up With this history????

thanks for listening. I don't want to over react. I do feel I have a good team, PCP, ONC, and GI.

Prayers for all who find themselves on this forum.

CM

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
    PET vrs CEA

    Which is the best test, PET or CEA?  I'm thinking its PET. 

    I know that my Onc was like a Bee on a honey pot when my CEA started to rise, scheduling a PET to see what's going on. 

    I wonder if your Onc is going by your last PET results for now. When do you get your next scan?

    im sure your Doc knows your family history and your concerns, but I'd be sure to mention them again and again. If you feel the need for more scanning, I'm sure he would be on board if it's healthy for you. 

    And everyone's concerns are important. You dont have to be stage 4 to be worthy of posting here. 

    My thoughts and prayers are with you. Keep us posted. 

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #3
    Trubrit said:

    PET vrs CEA

    Which is the best test, PET or CEA?  I'm thinking its PET. 

    I know that my Onc was like a Bee on a honey pot when my CEA started to rise, scheduling a PET to see what's going on. 

    I wonder if your Onc is going by your last PET results for now. When do you get your next scan?

    im sure your Doc knows your family history and your concerns, but I'd be sure to mention them again and again. If you feel the need for more scanning, I'm sure he would be on board if it's healthy for you. 

    And everyone's concerns are important. You dont have to be stage 4 to be worthy of posting here. 

    My thoughts and prayers are with you. Keep us posted. 

    Thanks so much, Sue.  That's

    Thanks so much, Sue.  That's helpful.

    Prayers for a good scan for you tomorrow.

    CM

  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #4
    From another Stage II

    Hello Cathleen,

    I just wanted to give you a little reassurance. I too am a Stage II A/B

    Diagnosed Oct.2009

    pT3-N0-Mx---26 nodes...negative. No perineural invasion...mild to moderately differentiated. CEA 4.6

    5 rounds of Folfox; 4 more rounds of Xeloda only.

    My CEA has always been in the 4's even before surgery. I seem to have lots of inflammation (severe osteoarthritis) as well as fibromyalgia and Graves Disease. l also have been around 2nd hand smoke from time to time.

    So, last year my CEA suddenly jumped up to 5.6...highest it has ever been. Had a PET and it showed nothing out of order. Next time it was taken ( 6 months later ) it was 4.3.

    Although at the time my onc. didn't seem to think much of my own theory, which was I had just gotten over a bad case of flu which then turned into pneumonia and I was sick as a dog for well over a month, she now thinks that was what caused the rise. Scared me to death though and I know how you are feeling.

    Cathleen, we are both close to our 5 year mark. Something to be thankful for and rejoice in, huh? Shoot, at times I wasn't sure that I would make it this far.

    Just wanted to tell you that many things can cause a rise in CEA and I am hoping that yours is just a 'fluke' like mine was.

    I will be thinking of you and hoping that your concern is put to rest.

    -Pat

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #5
    Dear CM

    With your family history, upward trenting on CEA and 2 polyps found a year ago, I would ask for a new colonoscopy.

    It is important to remember that scans of any variety have a minimum size they can detect.  Nothing 6 months ago, may now be something which could be detected.

    Besides, it will give you peace of mind to know it was checked.

    Prayers for CEA numbers to be caused by an unrelated issues.

    Hugs,

    Marie who loves kitties

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #6
    Fight

    to get whatever testing you think is necessary. With your history, I'd jump on it, just to ease my mind.

    My brother's CEA is a good indicator for him. He started as 2a, was clear for almost a year and his CEA went up. They did a colonoscopy which came back clean but his CT scan came back with mets to the liver and lungs. He's obviously stage 4 now. 

    Do what your gut is telling you and push as hard as you need to in order to get results.

    Good luck.

    Lin

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #7
     
    Go with your gut CM.  You

     

    Go with your gut CM.  You obviously are concerned.  Keep pushing.  You may recall my posts in early fall being concerned about my husbands slowly climbing CEA.  Unfortunately I was right to be concerned and wish I had followed my gut.  I hope you have nothing to worry about, but better to ease your mind.   Can you push for a pet/ct?  

     

    Please let us know what you do.

  • PatchAdams
    PatchAdams Member Posts: 271
    #8
    CEA 4 - 8 months

    I was just reading a paper that said the CEA can rise 4 to 8 months before something is large enough to be seen on a CT scan.  If it's too small for a CT scan, it's WAY too small to be seen on a PET.

    The 'invasion' is a concern because in the rectal area there are so many blood vessels and local recurrence doesn't always show up on fatty tissue or linings.  You might insist on a scope.

    Moderately diff. is good.  There's poor, mod. and well.  Some paths will say mod well.  The closer to well diff. the better. 

    Surgeon didn't take enough lymph nodes.  In colon surgery, 17 or more is now considered safer and more indicative of what might come.  In the rectal area, some people have dozens (I saw on person who said 100) removed. 

    Stay ON this!  Do NOT let them drop the ball.  I can name two members who were not followed closely enough after rectal ca and both had symptoms that caused doc to investigate and it was too late. 

     

    Patch

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #9
    My doctor's office also

    My doctor's office also dismissed that the cancer is genetic due to no genetic marker.  Even with all of the family members on my father's side having precancerous polyps and/or cancer.  To that I say, it's not that I don't have a genetic marker, it's that the marker has not been found yet.  I feel that you should ask for another scan so that you can have peace of mind.  That's what everyone told me to do when I was anxious and I think it helps tremendously to have two things support NED.  Also you can always go to a different doctor for a second opinion.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    From my own experience,

    I would say that pushing for more info is the right way to go.  Seems like so many of us have had these concerns (for a variety of reasons) often long before our doctors, no matter how well-intentioned.

    Asking for a colonoscopy seems reasonable (although that will only address localized recurrence), and if at all possible, a PET/CT.  That would cover all the bases, at least in terms of what is doable with present technology.

    If they don't find anything, then great! You can relax a bit, with 5 years under your belt.   And if they do find something, then you can get whatever is going on addressed asap.  As we all know, 6 or 12 months can make a huge difference in outcome.

    Pls let us know how the visit goes tomorrow. I'll be thinking of you!

    Big hugs~AA

    PS just wanted to add that the PET and the CT do measure two completely different things, so size is not really a factor in which one works best. Which is why if you can access a machine that does both, you can get more accurate results.

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #11
    annalexandria said:

    From my own experience,

    I would say that pushing for more info is the right way to go.  Seems like so many of us have had these concerns (for a variety of reasons) often long before our doctors, no matter how well-intentioned.

    Asking for a colonoscopy seems reasonable (although that will only address localized recurrence), and if at all possible, a PET/CT.  That would cover all the bases, at least in terms of what is doable with present technology.

    If they don't find anything, then great! You can relax a bit, with 5 years under your belt.   And if they do find something, then you can get whatever is going on addressed asap.  As we all know, 6 or 12 months can make a huge difference in outcome.

    Pls let us know how the visit goes tomorrow. I'll be thinking of you!

    Big hugs~AA

    PS just wanted to add that the PET and the CT do measure two completely different things, so size is not really a factor in which one works best. Which is why if you can access a machine that does both, you can get more accurate results.

    Thank you

    Thank you one and all.  Your responses are incredibly helpful and give me the support I need to advocate for myself.  I really appreciate everyone's time and sharing of experience. 

    I will let you know how I make out.

    Thanks,

    Hugs,

    CM

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