Well... Been a few years

toddi1973 Member Posts: 41 Member
Hey Fellas, been a couple of years that I stopped by here. Was honestly hoping I wouldn't have to come back but life doesn't go as planned, right ?
After 7 years of NED. A little kicked in the butt right now. Anybody have a good translation or words of encouragement ? This showed up on a CT scan recently but not on a PET scan. I had my colon removed 7 years ago and have a J-Pouch. No other area of concern based on the scans anywhere. CEA crept up from 2.0 to 5 over the last couple of months. Not sure how this can be a Met after all these years. Hoping it's a new primary but will certainly find out eventually.

Sections show fibrous connective tissue with dissecting pools of mucin associated with scanty strips of malignant glandular epithelium in keeping
with metastatic mucinous adenocarcinoma. A limited battery of immunoperoxidase stains (with appropriate positive and negative controls) was performed to determine the likely primary site for this malignant neoplasm. Tumor cells express CDX-2 and CK20 and are negative for CK7 and PAX-8. This immunohistochemical profile supports mucinous adenocarcinoma from a colorectal primary.


  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Oh my!

    Sorry to hear this news.  7 years out is wonderful, and I can imagine the gut punch you had, with this news. 

    With a CEA raise, I would imaine it is colon related, but wait and see. I hope it is something easily knocked down, and that you see seven plus more years NED. 

    Stick with us, and we will help you through. 



  • Butt
    Butt Member Posts: 352 Member

    What stage? I want it too!

  • zx10guy
    zx10guy Member Posts: 273 Member
    Sorry to hear about this.  I

    Sorry to hear about this.  I can relate to the emotions you're experiencing.

    The last section of your post implies there was already a biopsy done.

  • toddi1973
    toddi1973 Member Posts: 41 Member
    Met with the Onc and Surgeon today

    So after last weeks unexpected surprise biopsy report and the fact that after 7 years of NED, I met with both Surgeon and Oncologist today. Plan of attack: CARIS test ordered, Port implant next Thursday, then 8 rounds of FOLFIRI+Avastin. Then based on CARIS results change Avastin against Cetuximab. CT scan after 4 rounds to see where we stand and then once Chemo is done, we'll cut that sucker out for good.

    Surgeon recommended this protocol to get the tumor to shrink for clearer margins. Radiation is not on the plan as mucinous tumors are -according to both Onc and Surg) less affected by radiation and radition would likely destroy my J-Pouch. Does that sound like a sound plan of attack ?

  • Kazenmax
    Kazenmax Member Posts: 463 Member
    Honestly it sounds like a

    Honestly it sounds like a solid plan. I can’t imagine how it felt to hear this news but it looks like your docs are taking an aggressive approach. 

    Sening love and strength 


  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited November 2019 #7

    That has to be devestating news and I'm sorry to hear that.  I'm glad that you already have a doctor that is taking an active approach in tackling this quickly.  Wishing you the best going forward.


  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    This news would give quite a

    This news would give quite a let down. Were here to help.