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CT Scan didn't show cancer?

jacquelinem2's picture
jacquelinem2
Posts: 2
Joined: Apr 2017

Hey everyone, I'm not too sure if this is the right place to post this because it isn't exactly colon cancer, but if anyone could help me out that'd be great.

 

A few months ago, my brother started to experience some blood in his stools.  He took a stool test, which was positive, and was fast-tracked to a colonoscopy.  It was negative, but he was still feeling unsure so they did an endoscopy as well on a different day.  This was negative as well.  Two months ago, he started having very bad stomach pain and more darker blood in his stool.  We took him to the ER, where they performed a CT scan, which was also negative.  However, both a stool test and blood test showed a loss of blood, so we scheduled him for another appointment with his GI.   The GI looked over all his records and concluded that there was nothing wrong based on the negative tests, but because of the continuous bleeding, he ordered a Meckel's scan to rule out any diverticulum that couldn't be seen.  He got the test done two weeks ago, and the results said that there was a focus of activity in the mid-stomach, basically the small intestine.  When he went to get it removed, the pathology said that it was actually a carcinoid tumor and not a diverticulum.  We are meeting with an oncologist on Friday.

We are all very devastated, and we never expected something like this especially in someone so young (my brother is 32).  I'm just so confused on how a CT scan could have missed a tumor and the only thing that detected it was the Meckel scan.  Has this ever happened to anyone else?  I was under the impression that a CT scan can see everything and is used to stage cancers and such, what could have gone wrong?

Trubrit's picture
Trubrit
Posts: 5504
Joined: Jan 2013

I am so sorry that you have found yourself on this fourm, and yes, it is the right place for you to be posting. I am sorry for your brother, but he is blessed to have a sister who cares enough to come searching for answers. 

CT scans are not always the best for finding Cancer. PET scans are much better at pinpointing a Cancer and I confess to never having heard of a Meckel's scan.  I am glad that he has a GI Doctor who pushed for further testing. What a blessing!

Sadly there has been an increase in Colorectal Cancers in the younger generation. We have had several pass through our forum, and I personally have a friend who was diagnosed at 26, treated and is NED (no evidence of disease) for five years. 

As you are proabably aware, the sooner the Cancer is diagnosed the sooner it is treated the better the outcome. 

I don't think there were any mistakes in your brothers treatment. Sometimes CT scans just don't pick things up. It is scary to think that he may have carried on with his life, while the Cancer grew, but thats not happening. 

Having you and friends and loved ones beside him as he starts this journey, will help him immensely.  Take it one day at a time, and don't be tempted to jump ahead. There are so many, even Stage IV's who are surviving many years past their given date. Your brother will be one of them. 

We are here for you anytime (though the forum runs slow, so be patient). 

TRU

LauraCF
Posts: 27
Joined: Nov 2016

My Partner thought he was NED for about 6 months post-chemo, based on blood tests and a CT scan.  He started to complain of apin about three months post-chemo. Nobody really took it seriously until it got quite bad, and the surgeon who was supposed to reverse his ostomy wisely ordered a PET scan that showed a small tumour in the Sacrum (bone at the bottom of the spine).   The PET scan picked up the tumour; the CT scan showed no disease.  Buyer beware.  If something doesn't feel right, make noise until somebody pays attention.

zx10guy
Posts: 274
Joined: Dec 2013

No you're not alone in this.  I'm going through my own mystery right now.  Quick background, stage 3b diagnosed Dec. 2012.  Went through the standard FOLFOX6 treament for 6 months after; finished in July 2013.  Everything fine until last year.  CT scan was clear but CEA spiked up from the previous check 6 months ago.  3 CEA tests were done with the highest being 11 from my baseline of around 5.  PET was ordered.  Radiologists say clear, I felt it was inconclusive due to the hot spot I saw in looking through the images myself.  Only thing left to do was a colonoscopy which I was due for anyways.  Colonoscopy found a polyp in my appendix which after surgery was found to be cancerous.  Stage 0.

Now I went for my recent check up and again issues.  CEA spike.  Highest I've ever seen it at 16.7.  So a bunch of tests were ordered to also track down the source of my anemia.  Here are the tests I had done within a 2 week span:  CBC with full metabolic panel, 2 CEA tests, CT with contrast of chest/abdomen, PET/CT, small bowel capsule endoscopy, and colonoscopy.  So far everything is clear.  Nothing picked up on the CT or PET.  Nothing found in the images from the small bowel endoscopy, and nothing found from the colonoscopy.

At this point, will have to wait to retest CEA and if it's still elevated, CRC surgeon suggests exploratory surgery of my abdomen to see if he can see something the scans are not picking up.

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