I am looking at surgery on 3/4/2025. I am in my 70’s do not have canc.

Hi @asufloss - I am in my late 50's and had this operation 5+ years ago because I have MEN1 and my pancreas was covered with neuroendocrine tumors (PNETS). At the time of the surgery, they only knew that I had at least 4 PNETS, but subsequent to the surgery there were many, many more discovered and some were large enough that they encroached into my splenic artery and one of many lymph nodes nearby, that were also removed. I do not know your circumstances, but know that a lot of MEN1 patients may be facing similar surgeries in their future, to hopefully afford themselves a cure for their pancreatic lesions/tumors.

I had my surgery completed at Cleveland Clinic in Ohio by a large team of specialist surgeons and it took many, many hours. The first couple of days were the most difficult. I stayed a bit longer than a day in ICU but was only in my room for 4 days before being released. This is not atypical but perhaps not as common either. I was extremely motivated to get up, walk and get the heck out. I did not have a lot of pain after the first couple of days. The challenge was being able to walk around with 2 IV poles, an NG tube, and 4 IV's in both hands and arms. Anything you do with your dominant hand will end up in frustration. You will get very little rest with the numerous blood tests and IV changes. The first meal, days later will be heaven, best rice crispies I ever had.

The two biggest issues, once home, was handling my pancreatic-less diabetes and the pancreatic digestion challenges.

I did get a referral to see a doctor of pharmacy who helped me understand the nuances of an insulin pump/CGM (today's version of an artificial pancreas) as well as a nutritionist that can help you understand some changes you should make to reduce your carbohydrate load/fat content. I met with several of these people before my surgery. I learned that fatty meals will be your enemy for both diabetes and digestive management, even though you will be taking enzymes with every meal or snack. Your pump/CGM and your digestive enzymes will go everywhere with you as well as juice or glucose tabs and a glucagon emergency kit. Because you no longer have a pancreas your body has no way to reverse insulin lows that may occur so you will need a way to get sugar into your body, thus the need for tabs/juice. The kit is helpful for loved ones who may need to jab you if you are too low. (I fortunately have not had this problem but know if many Type 1 diabetics with a pancreas who have had to use the kit.)

The CGM application can be shared amongst loved ones on their smartphones to help you monitor your blood sugars and alert you to highs and lows. This can be very helpful in the early days as you try to remember you no longer have a pancreas to regulate these functions. Your pump yelling at you may be a clue as well. Unbelievably, I can say I feel naked if I don't have my pump by my side these days. I have found substituting lower fat meats for more of my meals helps with digestion and undesirable side effects. Having a spouse who helps prepare the many, many carb alternatives available today, helps tremendously. One thing others might not mention is that without a pancreas you may find that your kidneys could be vulnerable to additional protein/salts. I see a nephrologist twice a year for routine kidney monitoring because I also have parathyroid adenomas that I've had removed, they were/are hyper and cause kidney stones to form. Which is how I became aware that digestive issues can cause additional problems with kidney function, if not addressed. I complete 24 hour urine samples that have helped me to realize that high sodium diets (common in everyday American lives) further exacerbate issues with kidneys as they also bring along oxalates and calcium, making the kidneys work hard to filter. It is something to keep in mind. I am happy to answer more specific questions, if it helps. There is a lot to digest, so to speak. LOL You can lead a pretty normal life. You just have to spend time preparing for things and spontaneity becomes a little more difficult. Some days, blood sugars just don't respond (perhaps old insulin or bubbles in your insulin delivery system) or you have a little acid reflux. It helps tremendously if you have a reliable contact (surgeon/PA/NP) who can assist you in changing your digestive enzyme amounts or refer you to someone in nutrition. Keeping physically active and eating smaller meals throughout the day may also be of benefit. The important thing is to be patient with yourself and realize this isn't a race but journey, not everything can be resolved in a sprint. There are great days where you cheat in your diet and all is well and other days where you eat right and still have an insulin spike. My last A1C was 5.9 (normal is 5.6). You and your endocrinologist will become friends. You will see them more than your PCP, if you can get an appointment. Seriously. Make sure to find a great endocrinologist who understands your specific issues without these organs, and schedule appointments as soon as you need them. Many doctors have schedules out 7 months or more. I could go on... Please let me know what other things I can explain or clarify. I will be thinking of you on March 4th. You can do this!
-Matt

That seems like a LOT to remove if you don't have cancer. What are you/doctors hoping to prevent? Are there pre-cancerous cysts or lesions on all those organs? Do you have gene mutations that pre-dispose you to cancer of those organs?

My pylorus-preserving Whipple procedure removed gall bladder, duodenum, and half the pancreas. It was pretty invasive. At age 59, it took me about 7 weeks of recovery before I was able to return to work.

Without a pancreas, you will need insulin to control your blood sugar, and enzymes to help digest food. Without a spleen, you may be more susceptible to various infections.

Have you had a second opinion confirming whether this surgery is the best course of action?

Hi
Sounds like Whipple surgery, I am 73 male and just had it 1/17 and am in rehab now. The surgery went smoothly but the main problem is getting your stomach to function after the major changes to your new digestive tract. I was in hospital for almost a month because the surgery team pushed me too quickly from N/G tube to liquid to solid food. Then I threw up and started with the reinserted N/G tube until my bile buildup in my stomach decreased to start all over again with the liquid diet. Was told to drink as much water as I wanted and ice cream milkshakes more pudding Italian ice. Then I threw up once again only to repeat the N/G procedure again. Was on a TPN nutrition bag for a week and was discharged from the hospital on a liquid diet. So my advice would be to take your time pushing too fast with your stomach in such a fragile state . Good luck!

Thank you for your information.

I have gotten 4 opinions. I have a condition called Interductal Papillary Mucous Neoplasms benign) which line my pancreas.
My main pancreatic duct is dilated at approximately 11-14 mm. This is what alarms them is is considered precancerous. They feel it may be a genetic mutation b/c all the test for cancer are negative at the moment.

Thank you for sharing. Hope you the best for a speedy recovery!

Matt
Thank you so much for honestly sharing your insights and experience.
I am having my surgery at Memorial Sloan Kettering in Manhattan. It is difficult to process all of this but I have been in surveillance for almost year now and feel it is time, given the fact that 3 major institutions have concurred.
I truly appreciate your good wishes for my 3/4 debut!!! I hope I can touch base with you for emotional support and guidance.

Warm regards
Adele

Hi Adele - I'm happy to help. I can DM you my phone number if you ever need to talk. I did also want to mention that I was placed on Reglan after surgery to help digestion for healing and recovery but boy did it make me feel very unhappy and emotionless. It quickly resolved once the surgeon allowed me to stop taking it (and it wasn't the surgery but it was the drug.) Knowing that helps you face it.
The other thing that I think really helped me was taking Impact shakes (from Nestle) before surgery that helped me boost my immune system and helped with healing. I really think it helped me recover and get out of the hospital faster.

Very helpful!!! Trying to practice mindfulness. This is very difficult to wrap your head around.

Can I ask if they found any malignancy and if so did you need treatment.

Thank you and God bless.
Adele

It is a lot to absorb! For me, it was a shock as I did not know about the genetic problem I had all of my life until at age 54, the pancreatic tumors (5+) showed incidentally on a CT scan for a kidney stone! I figured I was a goner at that time. As I learned more and found the right surgeon for me, I read the following and it really helped me: https://www.amazon.com/Psycho-Cybernetics-Updated-Expanded-Maxwell-Maltz/dp/0399176136
They found 1 out of 13 lymph nodes positive for spread but nothing since then (knocking on wood)
Focus on what you will do when you are out of the hospital and the plans you have and you will get through this!

Adele,
Dr Soares from MSK NYC performed my surgery a1/17 and did a fantastic job. The nursing staff at MSK is super qualified and very attentive. You are in the right place and hope you have a quick uneventful recovery.
All the best!