Pancreatic Cancer Group: Introduce yourself and connect with others

Newbie here, hello all.

I have not been diagnosed with PC, but am monitoring for increasing dilation (main duct and bile duct). Most recent MRI showed the appearance of "tiny" cysts in the pancreas, largest 4mm, apparently not on previous imaging. Doctor says the cysts are of less concern than the dilations and is not yet recommending repeat EUS (last one December 2023). CA19-9 at 17. Other data, hyperkinetic gallbladder: 96%EF on HIDA.

Best thing so far for my symptoms was moving to low-fat diet last fall. Now I wonder what else I can do to 1) support my organs and/or 2) help identify source of dysfunction: Sphincter of Oddi? Ampulla of Vater? For example, after reading that caffeine can affect the SO, I am cutting back on coffee/tea.

Much appreciate any input on other diagnostics to pursue, ways I can be proactive, or things you have learned about working with doctors and the system overall.

Thanks and best wishes to everyone. Very glad to have found this group.

pf

Right now he is on Creon, so he is able to digest food and get nutients. We are very active and so the lack of energy and strength to do what he used to is frustrating and depressing him. He also has some pain from his kidney being blocked and getting irritated.
For me it is working through the situation with him. One minute I'm the greatest thing in his life, the next he's angry because what ever is bothering him at the moment and I become the target.

"the intake person said we needed a diagnosis before they could set up an appointment."

That was a big frustration trying to get my dad into the Mayo, and an area where I think they could improve.

Two local doctors knew my dad's case was cancer, but argued endlessly over what type it was. Local labs botched tests. We tried getting him into Mayo ASAP so a more competent lung specialist could sort it out, but they wouldn't see him until the locals settled their debate. All or nothing.

You'd think Mayo could set up an "oncology gatekeeper" program -- somewhat of a generalist, but with expedited access to the detailed experts and the ability to direct you to the right one(s).

Hello @vlny2018

I just noticed your post directed to Colleen. I agree, with you that quicker appointments would be better, but unfortunately the medical system seems to be overwhelmed and waiting weeks between appointments is more the norm, now.

How is your husband feeling? What are his most bothersome symptoms right now?

Hi Colleen,
Thank you for reaching out to me.

We haven’t gotten an appointment with Mayo yet, the intake person said we needed a diagnosis before they could set up an appointment. My husband had a biopsy of a spot on his liver two weeks ago that came back negative. Now we have an appointment tomorrow for a biopsy on his pancreas. Also, his left kidney is being blocked by a mass pushing on the tube going to his bladder. They are going to put a stent into the tube to open it up.

Our frustration is the length of time between the biopsies and the oncology appointments. We waited a week for the oncology appointment just to find out the first biopsy, of the liver, was negative. Now two weeks later before we get the second biopsy. Is this normal? Wouldn’t there be quicker appointments between biopsies? It feels like the cancer is just expanding while we wait for diagnosis. Time is not on our side.

Hi Colleen,
Thank you for reaching out to me.

We haven’t gotten an appointment with Mayo yet, the intake person said we needed a diagnosis before they could set up an appointment. My husband had a biopsy of a spot on his liver two weeks ago that came back negative. Now we have an appointment tomorrow for a biopsy on his pancreas. Also, his left kidney is being blocked by a mass pushing on the tube going to his bladder. They are going to put a stent into the tube to open it up.

Our frustration is the length of time between the biopsies and the oncology appointments. We waited a week for the oncology appointment just to find out the first biopsy, of the liver, was negative. Now two weeks later before we get the second biopsy. Is this normal? Wouldn’t there be quicker appointments between biopsies? It feels like the cancer is just expanding while we wait for diagnosis. Time is not on our side.

I am Vicki Lynn, my husband was recently diagnosed with pancreatic cancer, March 14th. We're still going through the process of diagnosis and treatment chioces. We have been trying to find answers to his health issues since October 2023. Is this typical or should we go elsewhere for answers? Is it hard to get an appointment at the Mayo Clinic? Would it be a long process as well? Every appointment here seems to be several days appart. It seems like the cancer will become much worse before we find treatment. Could someone please advise me. Thank you