Long standing symptoms and nothing on CT scan: Does it happen often?

Many thanks for your reply. I am glad that you have been reassured you don't have cancer , this is a huge relief. I hope I get this result soon.
To be honest, I do have health anxiety and it is all about cancer..I don't care about any other illness even if I have symptoms.. as long as they don't match a cancer.
I first thought of PC in February.
At that time I had burping, flatulence and some increasd stool frequency (not actual diarrhea).I googled (burping and cancer) and found that it can be associated with esophageal, stomach and pancreatic cancer. I had an endoscopy that ruled out esophageal and stomach cancers.
I was somewhat assured that I didn't have PC as I had a clear ultrasound and CT scan 2 months earlier. I also had tumor markers at that time and all was normal. I tried to distract myself and forget about it but I couldn't.
I googled again and found a lot of studies about (missed PC on CT scan) and had an impression that missing PC on CT scan is fairly common, sometimes I thought this was (the rule) according to what I have seen on Google, that was when I started to believe that I had PC.
Fast forward to mid-March, I started to have back pain and it was the typical type of pain associated with PC, few weeks later I got upper abdominal pain also typical for PC, so I had almost all the (pieces of the puzzle together,) pointing to PC. I had another CT scan , ilI thought that the tumor which was small and undetectable must have grown to a size that is easily caught by any scan, especially that (it) is now causing severe symptoms, but again, nothing could be caught.
Concerning radiological diagnosis, I know radiologists can't diagnose cancer but they interpret the scans and should know if there is an abnormality, that should be further investigated by clinicians.
Here where I live (not US or Europe), clinicians in general are not good at interepreting scans. They totally rely on reports given by radiologists so if the radiologist sees no abnormality, no one will believe that there is something abnormal in the area. For that reason, among others (age, general appearance , history of HA) I was told by many doctors that I don't have PC, but the truth is that I have intolerable pain and other symptoms that could be PC or something else. Unfortunately, nobody could give me another explanation of my symptoms so the priority now is to rule out PC .
By the way I had tumor markers slightly rising but within normal range and pancreatic enzyme tests within normal. It is really mysterious condition I feel like I am in a nightmare.

So basically, you are playing your own doctor. It seems you don't have doctors. I have pancreatic cancer that was diagnosed from a scan. It isn't fun. Why do you want it so badly?

@hopethereisnothing

Congratulations on that news!!! Good luck with the hunt on resolving the rest of your issues.

As @gardenlady1116 mentioned, pancreatic insufficiency can also lead to some of the bowel symptoms. Since your pancreatic enzyme tests were normal, that's a good sign. But hang on to those results, since they give you a baseline when you're "otherwise healthy" (no cancer detected yet), then try to get repeat testing on those (enzymes, A1C, CA19-9, CEA) as appropriate (quarterly?) to see if they start trending in a good/bad direction, or just have a slightly "noisy" variation above and below some healthy average.

With my PDAC, increased stool frequency came along before the color and consistency changes, but not radically so. There may have been a trend toward reduced pancreatic efficiency as my cancer developed, but I didn't have baseline numbers to compare against. Data is a good thing to have! The bowel experience after having half my pancreas removed was "steatorrhea" ( https://www.ncbi.nlm.nih.gov/books/NBK541055/ ), requiring well-timed enzymes for me, since meat (and sigh, fat...) are still components of my daily diet.

Something else to keep at the back of your mind is the association between PC and late-onset diabetes. In my 50's, I had often been admonished by my primary care doc that I was starting to show signs of a pre-diabetic, but never in the active concern area. I'm guessing my PC development was rather rapid, because I was diagnosed with "diabetes associated with pancreatic disease" (similar to Type I?) the same week as my PC diagnosis.

Regarding your question about MRI vs CT: The center treating my PC had always relied on MRI for the abdomen/pelvis, but CT for chest. They also considered their MRI equipment and radiologists to be far superior to what I had at a local facility closer to home. When I went to another center for a second opinion, they did CT for chest (checking for mets), but also did CT instead of MRI for abdomen/pelvis. And it was the consulting surgeon (not the radiologist) who spotted the first met elsewhere in my abdomen. I asked him if they could review my six-weeks-prior MRI from the "superior" center to see if the met was visible on that. His radiologist said it appeared to be present there as well, but not clear due to the "inferior outside imaging."

So, in that setting, the CT did better than the MRI, and the clinician (surgeon) there did better than his radiologist AND the surgeon+radiologist at the other center. I sense there is some degree of rivalry between centers that own their own equipment. There *might* be some conflict of interest with centers making more money off their own imaging, but there is clearly a comfort and familiarity level with their own equipment/results and personnel they can easily follow up with.

One thing that surprised me was their common lack of PET imaging in my case (at two centers of excellence). Although you can combine PET with CT or MRI, it gets rather expensive on the PET/MRI side. When they combine PET+CT, I think the CT is used more to help localize the PET results with respect to other structures & organs. One doctor told me they didn't depend on PET to find "the needle in the haystack" so much as obvious mets far from the original tumor location.

In my case, when the MRI showed the recurrent "mass" at my surgical site, we all thought the EUS biopsy would be the definitive answer, as it was in the initial PC diagnosis, but it was a false negative that delayed treatment by a couple months. I asked if the increased sugar uptake that's observed on PET scans would help determine whether the mass was cancerous or not. Nobody ever answered yes, but they didn't provide clear explanation of their answers either. 🙁

Many thanks for your reply. I am glad that you have been reassured you don't have cancer , this is a huge relief. I hope I get this result soon.
To be honest, I do have health anxiety and it is all about cancer..I don't care about any other illness even if I have symptoms.. as long as they don't match a cancer.
I first thought of PC in February.
At that time I had burping, flatulence and some increasd stool frequency (not actual diarrhea).I googled (burping and cancer) and found that it can be associated with esophageal, stomach and pancreatic cancer. I had an endoscopy that ruled out esophageal and stomach cancers.
I was somewhat assured that I didn't have PC as I had a clear ultrasound and CT scan 2 months earlier. I also had tumor markers at that time and all was normal. I tried to distract myself and forget about it but I couldn't.
I googled again and found a lot of studies about (missed PC on CT scan) and had an impression that missing PC on CT scan is fairly common, sometimes I thought this was (the rule) according to what I have seen on Google, that was when I started to believe that I had PC.
Fast forward to mid-March, I started to have back pain and it was the typical type of pain associated with PC, few weeks later I got upper abdominal pain also typical for PC, so I had almost all the (pieces of the puzzle together,) pointing to PC. I had another CT scan , ilI thought that the tumor which was small and undetectable must have grown to a size that is easily caught by any scan, especially that (it) is now causing severe symptoms, but again, nothing could be caught.
Concerning radiological diagnosis, I know radiologists can't diagnose cancer but they interpret the scans and should know if there is an abnormality, that should be further investigated by clinicians.
Here where I live (not US or Europe), clinicians in general are not good at interepreting scans. They totally rely on reports given by radiologists so if the radiologist sees no abnormality, no one will believe that there is something abnormal in the area. For that reason, among others (age, general appearance , history of HA) I was told by many doctors that I don't have PC, but the truth is that I have intolerable pain and other symptoms that could be PC or something else. Unfortunately, nobody could give me another explanation of my symptoms so the priority now is to rule out PC .
By the way I had tumor markers slightly rising but within normal range and pancreatic enzyme tests within normal. It is really mysterious condition I feel like I am in a nightmare.

You can send your scans to a cancer center and a radiologist will re-read them. My pancreatic cancer was missed on first MRI read locally - I agree - it can be missed.

I was thinkinhlg of this