Diagnosed with Pancreatic Cancer: Adenocarcinoma

Hi @ayeo - I am sorry to hear that you are going through this. I can certainly understand the concern that you have. I experienced something a little different and though this might help. I was diagnosed with five PNETs in 2019 as a result of MEN1 as it turns out. I struggled with the decision of a total pancreatectomy for a few weeks and made the move forward the week of Thanksgiving.

The surgery lasted about 9 hours and resulted in the removal of my pancreas, spleen, gallbladder, duodenum and 13 lymph nodes. I was in SICU over night and moved to a room the next day. I was on a NG tube for three days and was allowed solid food on the fourth day. My recovery went well and the pain was manageable with medication. It took a bit to get my blood sugar under control (since you become insulin dependent diabetic then.) I went home on day six and recovered well. I went back to work remotely on day 8 and continue lead a normal life. I manage digestion with Creon and control glucose with a pump and CGM. Some days are challenging but all in all, I am still here 6 years later. One day at a time for me and I hope all goes well for you.
-Matt

@ayeo I am sorry to hear about your diagnosis but if you can look at from the point of view that it was caught early enough for surgery - that has to be the best thing when you have cancer. I am a caregiver - my husband was diagnosed with pancreatic cancer in Nov 2023, surgery (distal pancreatectomy and splenectomy) in Dec 2023. Recovery for my husband took about 3-4 months for him to feel near normal but I would say within a month he was moving comfortably and eating decently (his stomach had a sliver cut out and that affected eating). Sleep post-op was not a problem but get doctor to prescribe something later on if you need. Very little pain at the op site; just the necessary care to keep the op site clean. Eat healthily - fresh food. Get some protein shakes and juices. And asked about CREON or equivalent to help with protein digestion.
I read the posts on this forum and it encourages me. The people here are so courageous and positive that it gives me a boost on bad days.
My husband still on chemo a year on because oncologist is cautious and wants to make sure it does not return as @markymarkfl experienced. But side effects minimal and he is able to go about his work and has travelled some. All the best; if you are up to it, post again and let us know how it went.

My wife was diagnosed with cancer in the pancreas in late November. She started chemotherapy in January 2025. Before her chemotherapy, an oncology surgeon told her to hold off on chemo because he was planning to do Whipple Surgery on her. We waited three weeks for a pre-op appointment at which time the surgeon told her he had decided not to do surgery on her. We were disappointed that he would not do surgery but also a little upset that we had waited so long to begin chemotherapy. She has completed two rounds of chemo in the meantime, and she will have to take chemo every two weeks for as long as she can live. He gave her a possible prognosis of one year. Could another doctor give her a better chance of survival beyond 11 more months?

@jayligon ,

Everyone is different and no doctor has a crystal ball. My first oncologist estimated 2-3 years for me back when I was Stage-2, before Whipple surgery. I'm still doing well, despite the recurrence and Stage-4 status, 3 1/4 years post-diagnosis. Another oncologist told me most patients on my chemo (GAC) develop resistance or intolerance to it after 6-9 months. I'm still going fairly strong on it at the 2-year mark.

@stageivsurvivor linked a good paper a while back about interpreting the statistics and how they change over time. I failed to bookmark it then, so I'm hoping he'll re-post if he reads this -- it was a pretty encouraging read. 🙂

I think this may be the essay you are referring to addressing cancer statistics-
https://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

I have two close friends I met through my pancreatic cancer journey and advocacy. Camille Moses and Davi Dagistino were ineligible for the Whipple procedure. Both are long-term survivors and no longer are on chemo in quite some time. Camille is coming up on 13 years in March having been diagnosed in 2012. Davi just celebrated 7 years last week.

I did have the Whipple procedure because the micrometastatic disease in my liver was too small at the time of the initial CT scan to detect it and was expedited to surgery because the tumor looked to be very close to my portal vein. They opened me up and saw the tumor was already in contact with the portal vein and the surgical specimen showed it had penetrated the portal vein confirming the source of the metastatic disease.

After 8 weeks surgical recovery, the first chemo I was put on had no effect from the first cycle and only realized 3 months later at the first scan. So at this point, I went 20 weeks with no effective chemo. My care team members never said a word about life expectancy let alone being told I would need chemo for live….how wrong they would have been. I did the effective chemo from November 2012 to October 2014. I never needed further chemo in the ensuing 10 years. I have survived over 12.5 years since diagnosis of stage IV disease and considered by a number of noted surgical and medical oncologists as cured. Statistically every one is n=1. No one can accurately predict the prognosis. There are many affections that can influence the end result. I didn’t worry about what I could not control. I focused on what I could control and followed the medical advice and pushed myself in doing daily moderate exercise and keeping a positive mindset.

This doctor gave you a textbook answer. Same for my husband in Feb/March 2024 - onco gave him a year. We changed onco (not recommending you do that but do ask questions). My husband, while still on chemo, is here and doing well with few side effects from chemo.
You can read the posts from @stageivsurvivor and @markymarkfl. No doctor can be that sure how long your wife has or how well she will do with chemo; you both be positive and fight on. It will be tough and there will be really bad days but I can attest to plenty of good days too.

Thank you.

My cousin sent us this essay when my husband was diagnosed. The doctors have never mentioned a "time left" number... have always said, we'll do this chemo until the cancer shows resistance, then we'll try something new. It's working so far... though I'm still hoping he can regain some energy to enjoy life a little more. He is not eligible for surgery because of the spread ... but maybe that can change too.
Thanks for sharing the statistics essay. It was good to read it again.

@sheridanb, just to share that we recently found out that the fatigue and "brain fog" may not have been due entirely to the chemo. Oncologist sent us to a psychiatrist, who prescribed a very low dose of SSRI (selective serotonin reuptake inhibitors) and after about a month, energy levels picked up and the "brain fog" cleared. Apparently, both which are side effects of chemo can also be side effects of feeling low and unhappy (with cancer, that is not at all surprising).