Indeterminate MRI Findings - Terrified.

Posted by markoohay @markoohay, Aug 29 3:14pm

I had one of those full body scans done at Prenovo. It recommended a follow up MRI of the abdomen because it saw a cyst on my pancreas. I had no symptoms other than some heartburn and elevated pancreatic enzymes back in July, which came back down (assumption was GERD); but I went ahead and had the follow up MRI last week and it found an "indeterminant nodular prominence at the pancreatic head which may be developmental variant vs post inflammatory change or developing lesion". I was able to get a GI to schedule an endoscopic ultrasound next week, but I'm all over the place emotionally. I still have no symptoms, other than what feels like muscle pain near my belly button (and I also have a small hernia there). And of course, because of all the anxiety, my stomach is upset (wasn't upset prior to the findings).

Anyway, I'm literally beside myself. I'm terrified and stumbled across this sight so I thought I'd participate. I'm terrified the EU will bring bad news (even though there is every possibility its something else). Just having a hard time not focusing on the worst.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

markoohay | @markoohay | Aug 31 9:44am

In reply to @dalegantous "A few things, get a CA19-9 blood test if you haven't already, it is the marker..." + (show)

Glad to hear you are well. Took blood tests yesterday. Waiting on results.

gardenlady1116 | @gardenlady1116 | Aug 31 4:44pm

Center of excellence is essential for correct interpretation of tests and recommendations for follow up. Do your research. NPF is a place to start. What region of the country are you in? Close to one of the major centers like MSKCC in NY, Baltimore, etc for expert care. Not every EUS is the same. You need an expert.

markoohay | @markoohay | Sep 1 1:15am

In reply to @gardenlady1116 "Center of excellence is essential for correct interpretation of tests and recommendations for follow up. Do..." + (show)

I’m in Los Angeles

markoohay | @markoohay | Sep 1 1:36am

In reply to @gardenlady1116 "Center of excellence is essential for correct interpretation of tests and recommendations for follow up. Do..." + (show)

What is NFT?

ncteacher | @ncteacher | Sep 1 9:16am

I wanted to mention two things. (FYI, I'm just a patient, not any sort of medical professional.) First, I completely understand your panic at the MRI report, but hang in there--you don't have anything definitive yet. I noticed that the radiologist who wrote the report listed three possibilities for the finding on the image and didn't emphasize one over the others. I was diagnosed 17 months ago, and I've had a bunch of CT scans--8, 10? I can't remember. Anyway, every radiology report is written differently because they've all been written by different MDs. Each person emphasizes different things and interprets differently. Understandable (they're different MDs) and annoying (what the heck?!). My oncologist looks at the report, but reads the CT scans himself because he recognizes that interpretations vary. So I'm glad you're pursuing additional assessments to pin down the MRI findings.

Second, some organizations provide certifications for cancer centers that meet their specific criteria (research, caseload, that sort of thing). You can find national lists of these centers online, as well as the criteria used to identify them. The National Pancreatic Foundation is one.
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
Another is the National Cancer Institute, which provides three different designations based on the center's emphasis.
https://www.cancer.gov/research/infrastructure/cancer-centers
Hope that helps. Good luck! Hope all works well for you.

markoohay | @markoohay | Sep 1 9:30am

In reply to @markoohay "What is NFT?" + (show)

I meant NPT…

stageivsurvivor | @stageivsurvivor | Sep 1 10:19am

In reply to @markoohay "I’m in Los Angeles" + (show)

The Hirschberg Center at UCLA is a leading center for treatment of diseases of the pancreas.
https://www.uclahealth.org/locations/ucla-agi-hirshberg-center-pancreatic-diseases
For cysts surveillance, surgical oncologists Timothy Donahue MD and O. Joe Hines MD.

markoohay | @markoohay | Sep 1 11:08am

In reply to @ncteacher "I wanted to mention two things. (FYI, I'm just a patient, not any sort of medical..." + (show)

Awesome! Thanks! I’m hoping it’s nothing, but appreciate the knowledge. Good luck on your journey!!!

gardenlady1116 | @gardenlady1116 | Sep 1 12:17pm

In reply to @markoohay "Awesome! Thanks! I’m hoping it’s nothing, but appreciate the knowledge. Good luck on your journey!!!" + (show)

https://www.uclahealth.org/cancer/cancer-services/pancreatic-cancer
I came up with the same thing. Looking futher I see their endoscopic ultrasound on this link, but not a specific doctor
https://www.uclahealth.org/medical-services/pancreas-disease/pancreatic-disease-treatments/interventional-endoscopy#EUS
My doctor at MSKCC had very specific instructions about the specific doctors he wanted me to see and recommended Dr. Rolston for this type of procedure for screening of my brother for pancreatic disease because of our common BRCA gene and my pancreatic cancer. I am a retired physician so I did the research for him, he chose to use his local doctor. I also did research for my sister to come up with a doctor at University of Michigan. Wouldn't recommend that place to anyone. She did have a GI fellow (trainee)do the endocscopy. Her pancreas was fine, but a different cancer was detected. The fellow seemed to have missed the cancer in her esophagus with the initial ultrasound. When a possible cancer was detected in the esophagus, the attending physician (fully trained who was highly rated) did the endoscopy himself and found her esophageal cancer. The delays did not cause her demise, I don't know if a few weeks earlier might have made any difference. but if the correct diagnosis was made initially, it wouldn't have been as hard on her. The University of Michigan does have a recognition by the NPF, I am glad I never went near the place. Make sure you find out who will be doing your procedure in an academic medical center. All I can say is that the progress noted that the attending physician was present in the room. Doing more than looking at his cell phone I would home. Given what happened I wonder what he was doing during the procedure his trainee was doing.