Pancreatic spot

2nd opinion! MRI! Bloodwork! (CA19-9, CEA, ctDNA)

It doesn't necessarily have to be Mayo, but someplace with pancreas expertise. At a minimum, maybe you can have an independent radiologist review the CT images. Mayo seems to prefer MRI for pancreas, so you might get a different view there. The bloodwork is too cheap to not do. ctDNA tests are a bit pricier, but CA19-9 and CEA are cheap enough to do as a self-pay every few weeks. Getting a head start on those would help identify what his "normal" is or if there is an increasing trend over time.

Risk factors may influence diagnostics and treatment. If he is considered high-risk (genetic mutations or family history of pancreatic cancer), he should definitely be checked out more thoroughly as a matter of protocol.

Did the original oncologist say what kind of "spot" it is, or exactly where on the pancreas it is, how big it is, or what makes it "non-worrisome" for now?

Quote below from an oncologist monitoring another high-risk patient I know (with ATM mutation and sibling history of PC):

“Pancreatic cyst monitoring is a subject of considerable debate in the GI world. There are several guidelines that differ in a number of ways. Notably, these guidelines focus on individuals who are NOT high risk. That being said, we don't have studies specifically in the high risk population. Our advanced endoscopy group follows the Fukuoka guidelines: https://www.ncbi.nlm.nih.gov/pubmed/28735806. These guidelines were also used by Mimi Canto and colleagues in the recent publication on screening outcomes: https://www.ncbi.nlm.nih.gov/pubmed/29803839. Worrisome cyst features include cyst size (3cm or larger), thickened/enhancing cyst walls, main pancreatic duct dilation, mural nodule in the cyst or main pancreatic duct, abrupt change in duct caliber or rapid cyst growth. If cysts are low risk, proceeding with usual screening (annual EUS alternating with MRCP) is likely a reasonable approach.”

mikalleb,

If it were me, I would push IMMEDIATELY to be screened by Anderson, Mayo (Rochester), MSKK, etc - a Center of Excellence for PANCREATIC cancer - IMMEDIATELY. Fly tomorrow if you must.

If biopsy (you only mentioned a scan) shows cancer, immediately start chemo - following genetic testing.

I know I sound a bit shrill, but time is of the essence.

As far as I know, the Dr. Just said they would watch the spot. My husband doesn't seem as concerned as I do. It's frustrating, as I went through PC with my mom. It's a HORRIBLE disease.

IMO, mikalleb, you need to immediately seek another opinion at a center of excellence - spend whatever it takes.

Your husband only gets one chance to do this right.

You might want to take a look at : Anyone have/had BD-IPMN? Lots more information in that discussion thread

Update: so discouraged. Mayo won't even look at him until it's actually diagnosed as cancer. Doesn't make any sense to us. My husband argued with the intake person but she wouldn't budge. Does anyone know where he could get a second opinion in the St. Paul/Minneapolis area? Not MN Oncology.
Thanks!

Couple of thoughts. First, would Mayo gastroenterology see you to do the diagnostic workup? My pancan was diagnosed by a gastroenterologist who pulled the tumor marker blood tests and did the endoscopic ultrasound that verified diagnosis. He referred me to the surgical oncologist, who staged the cancer but wasn't involved in the initial diagnosis. Only then did I get referred to a medical oncologist so we could begin treatment. I don't know who you tried to see at Mayo, but maybe this is an option for you.

Second, I know nothing about MN, so please take this with a grain of salt. I looked on the NCI list for centers of excellence and found that besides Mayo, there is the Masonic Cancer Center at the University of Minnesota in Minneapolis. The National Pancreas Foundation lists those two clinics as well. I don't know whether the Univ of Minnesota clinic is the same place you went to first.
https://www.cancer.gov/research/infrastructure/cancer-centers/find/minnesotamasonic

Thank you so much, we will look at this route.

OK - fastest and cheapest thing to do is immediately get CEA and CA 19-9 blood tests - these are cheap! Might not even require doctor prescription.

Next level self help is a Galleri blood test - more expensive, though.

Please do not delay.