CA 19-9 and pancreatic cancer: What do the numbers mean?

Hello @beachdog

I appreciate you offering some perspective to the CA19-9 numbers as it relates to the progression of pancreatic cancer. You provided some great personal examples. You mentioned your wife having "chemo, sbrt. and surgery." I'm not sure what "sbrt" stands for. Can you explain?

My experience is due to my wife's pancan treatment which started upon diagnosis in July 2019. A significant drop in CA19-9 as you've had could be a good sign. There are no absolutes with the meaning of the number and one person's 900 can mean something different for another patient. In my wife's case she was at 2000 when diagnosed at stage 3 and dropped to 28 after chemo, sbrt and surgery. She hit 3000 when metastasis was identified then after more surgery and chemo hit a low of 180. Without verification of a scan, we don't know what the CA19-9 is telling us yet. Good luck and prayers for you.

He gets pretty nauseated after the chemo and for a week doesnt care about eating but makes himself. He has diarhea allot because of the chemo and the cancer...he takes creon it helps a little.

Thanks so much..hope your husband willbe able to receive surgery soon...its a long road and hard to watch them go through this.

Hello my husband and I seem to be in a similar place as you..he just finished 8 treatments of Folfir and the CT scan results were good enough that the docs want us to go on to radiation..likewise hoping to become a surgical candidate at some point. There are so many hurdles along this path it is hard at times to be positive but it seems to be worth reaching for. Best of luck to you both too.

Hello, @mcendroski, and welcome to Mayo Clinic Connect. I appreciate you advocating for your husband's health as he is dealing with pancreatic cancer. I do agree with what @beachdog has said that it is important to work with a surgeon who is very experienced in pancreatic cancer.

In order to find such a doctor, I would encourage you to visit the website for the National Pancreas Foundation. On their website, they have a listing of Pancreas Centers of Excellence. If you look at that list, you might find a doctor near you, or at least within a reasonable driving distance from you. Here is a link to that listing, https://pancreasfoundation.org/npf-centers-info/. Also, here is the website for The American Cancer Society, https://www.cancer.org/. As you can see at the top of their website is a toll-free phone number. You might also consider calling them and inquiring about a pancreatic cancer specialist in your area.

Do you mind sharing how your husband is feeling? What are his most difficult symptoms now?

He is on what they call modified Folfirenox ...the surgeon is the one that keeps delaying it..dr has metioned he might get second opion if he has to and also has mentioned radiation...thank you for your prayers i do feel he will have surgery in the future.

Which chemo regimen is your husband receiving? Has he been told that he should get radiation also before surgery? Are you seeing a surgeon that specializes in pancreatic surgery? The skill and experience of the surgeon is a major determinant of whether a resection is possible. Praying that his chemo goes well and is effective.

my husband has locally advanced pancreatic cancer. After he had 6 treatments his tumor which is close to the sma artery had not pulled away far enough for surgery...kinda feeling hopeless at this point. His Ca 19-9 number where dropping they started at 124 andwent to 54 but only dropped to 52 dont know whats going on but hoping his chemo will kill this tumor hes got 5 more to go.

Everyone's ca19-9 reading is unique to the individual. I understand that there are people who have completely "normal range" CA19-9 despite active pancan. My wife's CA19-9 was over 3000 when the recurrence (ovarian tumor) was spotted in 2/21 CT having shot up from under 200 in 1/21. Immediately after surgery with clean margins, her CA19-9 rose to over 3300. The oncologist wasn't concerned since she was scheduled for chemo as soon as she was recovered from the surgery. According to a friend, a retired pancan researcher, the CA19-9 can increase in response to dead cells. After 8 GAC treatments, her CA19-9 is below 200. She's completed 10 treatments now with 2 more scheduled. Won't have another CA19-9 until after treatment 11.

In my wife's case, CA19-9 seems to track well with the presence/absence of active cancer cells but it is not foolproof. Ongoing scans and paying attention to symptoms are key to detection. BTW, we've had almost all of my wife's CT and MRI scans re-read for second opinion. Our insurance covers second opinions.