Surgery. Recommend or not ?.

@ behr66,
I just saw several discussions about that very topic on You Tube by at least three different Doctors. I didn't save it since it did not pertain to me. Try putting that topic in YouTube and I'm pretty sure you will get some good info.
Good Luck. Regards, Rick

Dr. Douglas B. Evans at the Medical College of Wisconsin (MCW). He has an excellent educational video series called “Pancreas School,” which is specifically intended to help pancreatic-cancer patients and families understand diagnosis, treatment and surgery. Dr. Evans is the host of the series. Youtube

Hi @behr66 - sorry to hear you are going through this. I had this same surgery about 7 years ago and am doing well. I manage the resultant diabetes with an insulin pump and CGM and use Creon to aid in digestion. All in all, I still lead an active and fairly normal life. There are some changes to what I eat and how to manage blood sugar and that took a little time to get adjusted.

For me, it was the right decision for sure and have a great team of Doctors that help me manage the conditions as a result.
Take care,
- Matt

Thanks Matt. Hope your well. Ed.

@behr66. My husband had a non -pyloric preserving Whipple November 2025, so almost a year. His surgery was post Neoadjuvant chemotherapy 9 rounds of Flofirinox. If surgery is an option you are in the fortunate 20% who can. Based off the information we found it provides the best option for survival. He was super fortunate and has recovered without any serious complications, is back to work, active, happy. So far post Whipple tests have been NAD. It is very scary diagnosis, and surgery is very complex and carries high risks. Finding an experienced surgeon and hospital that performs at least 16 a year is important. He had many reservations but felt he had little options and it was the best possible choice to overcome his cancer. I have seen similar questions on this forum with many helpful responses, and has been a great resource. May be helpful to search the topic on this site for more. Wishing you the best outcome in this journey.

If you are referring to a total pancreatectomy that removed the entire pancreas resulting in the management of type 3c diabetes and Exocrine Pancreas Insufficiency, there are several people who are managing fine many years out from surgery using an insulin pump/monitoring system and using Rx pancrealipase to manage Exocrine Pancreas Insufficiency sufficiency.

Contact the SeenaMagowitzFoundation.org (SMF) and they will put you in contact with Kay Kay’s who had a total pancreatectomy and is a 32 year survivor who has been thriving.

If you are referring the the Whipple procedure that removes just the head of the pancreas, I had this procedure over 14 years ago, went on to have stage Iv Pancretic cancer and obtained cure through aggressive chemotherapy using full-dose Folfirinox over 24 months of continuous administration. Life has been back to normal for many years and I am thriving with no limitations.

I am active with Kay Kays on the SMF weekly support group meeting answering questions from participants via the Zoom meetings on our surgeries and full recoveries. See the website for meeting dates/times and how to register under the Patient Support link.

@stageivsurvivor how long after pancreatic head removal was the cancer found?

The Whipple was performed 2.5 days after diagnosis. Metastatic disease was already present in my liver but was still micrometastatic when the diagnostic scan was done week prior to surgery. A post surgical CT one week after surgery had grown enough to exceed the detection threshold of the CT that in 2012 could detect a size of 4-5 mm. Today a CT can detect 0.5-1 mm. Had it been known I was already stage IV at diagnosis, the Whipple would not have been performed and most likely it would have changed my outcome.

@behr66, how did the appointment with the surgeon go? What type of surgery will he have: total pancreatectomy?