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

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?

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.

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

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.

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.

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?

Sbrt is focused radiation treatment. Gold fiducials are implanted in the target area of the pancreas via EUS. The fiducials are targeted during the radiation which creates a pattern like the spokes of a bicycle wheel. That way the target gets the main radiation and the rest of the body receives minimal exposure. In my wife's case, they used photon radiation and the tumor was 100% necrotic after 5 treatments. There are a limited number of facilities with the technology to perform sbrt.

I appreciate the explanation, @beachdog . It sounds like a very effective treatment method. Do you mind sharing the facility where your wife was treated?

Hello again. Thanks for the info about sbrt. I have been reading about. It seems like it accomplishes what regular external radiation does in a much shorter time. I don't know if there is a downside..I would also like to know which treatment centers are doing it..sorry to hear about metastasis. For your wife she has been through so much..wishing you both well.

@annebauer19
My wife went to Johns Hopkins for her SBRT. She also had her surgery there since they are a pancan center of excellence. She also had IORT (intra operative radiation therapy during her pancreatectomy). JH is one of the few operating theaters with this capability. IORT is used to treat the surgical margins and was apparently succeful in my wife's case since she has had no recurrence in the extensive surgical bed. She has experienced skip-metastasis to the ovary but that start of that tumor likely predated her pancreatectomy.

SBRT is ideal for localized therapy since it doesn't overdose large areas of the body but it is limited to use when there is a well localized target.

Once again, I'm not a clinician, just relating experience through my wife's treatment. Please be sure to check with your medical team and get second opinions. JH was our second opinion source and continues to review her scans while undergoing treatment locally.