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Well... Been a few years

toddi1973's picture
toddi1973
Posts: 41
Joined: Oct 2011
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's picture
Trubrit
Posts: 5048
Joined: Jan 2013

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. 

Tru

Tru

Butt's picture
Butt
Posts: 350
Joined: May 2018

What stage? I want it too!

zx10guy
Posts: 245
Joined: Dec 2013

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's picture
toddi1973
Posts: 41
Joined: Oct 2011

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's picture
Kazenmax
Posts: 406
Joined: Feb 2016

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 

K

Annabelle41415's picture
Annabelle41415
Posts: 6384
Joined: Feb 2009

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.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 560
Joined: Jul 2016

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

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