Is this monitoring regimen too “hands off?”

Posted by ch1co2 @ch1co2, Jul 25 8:21pm

Diagnosed with pancreatic adenocarsinoma in 2023 after acknowledging that coffee colored urine and yellow skin were not normal. Had Whipple November 2023 to remove small tumor not involving any vessels. Ca-19 was 55 at that time. Two weeks in hospital then released and after five days home back to hospital for another two weeks with sepsis. No post Whipple chemo due to my sepsis recovery. I did do 8 rounds Folfirinox pre-Whipple. Has been a year and a half since my Whipple now and I’m pretty much back to normal. Had a ct scan every three months for the first year and just completed my first one after a six month period. All clear. Oncologist says I will do another scan in six months and then we wii change to having them at one year intervals with a Ca-19 taken at the six month mark. I have not had a Ca-19 test done since my Whipple 18 months ago. Anybody think this might be too light in monitoring any cancer Mets that might occur.

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

jeeplewis | @jeeplewis | Jul 26 7:19am

Good morning. For comparison: I had a similar situation. Diagnosis in March 2023. A small tumor at the head of the pancreas putting pressure on the bile duct. 8 rounds of Folfirinox, Whipple, 4 rounds of Folfirinox. I am on a plan of scans & blood work quarterly for 2 years followed by semi-annually for 3 years. I have two more quarterly visits. I will discuss continuing quarterly Ca 19-9 readings in years 3-5. I’m being followed by Mayo (Rochester) and an oncologist in my home town.

I would suggest you discuss closer monitoring with your oncologist.

mcharlesfrancis | @mcharlesfrancis | Jul 26 7:54am

My opinion is that you should be more aggressive on getting scans. Pancreas cancer has a habit of coming back. My radiation oncologist tells me scans can not see cancer that is less than 50000 cells in one spot.

gamaryanne | @gamaryanne | Jul 26 7:59am

Yes, I do!

carfbuch | @carfbuch | Jul 27 11:55am

Hello! I had my Whipple June, 2024 for a cyst with Adenocarcinoma at the head of my pancreas which was found incidentally in 2024 in an MRI for Diverticulitis. No chemo pre or post Whipple. My first year post Whipple I had a CT scan with contrast every three months, in addition to CA 19-9 and Signatera blood biopsies. Going into my second year post-Whipple, getting the same monitoring regiment every four months. The combination of Signatera blood biopsies and the CT scans give me a lot of piece of mind that if any cancer cells are detected it will be small enough to treat right away. I have also had a DNA test for the cancer cells that were in my cyst. Hope this helps your discussion with your doctor.