Did anyone have pnet in pancreatic tail and had distal pancreactomy ae

Thank you for sharing your experiences. I'm so sorry to hear about the latest surgery and complications.

Can I ask where you had the surgeries. Were they done at the high volume centers you recommended.

@kathyfujii, my pnet was in the neck, not tail, so i went into my surgery expecting a Whipple, not a Distal.

The tumor was small (1 cm), and only caught because it would swell up & block my duct, causing multiple bouts of Pancreatitis over the years.

The surgery was in May of 2014, and once they opened me up (open surgery with a cut from the base of my sternum to just above my navel) and cut off the tail to resect the lump, they realized that i'd basically digested everything inside the tail, and there wasn't "enough" left to reattach.

So they ennucleated the tumor, sewed me up, and i was done (no splenic involvement, so it and my accessory spleen stayed).

I was up and walking by that night, BUT i also went into the surgery "mostly healthy," and again--had no additional involvement and the pnet was small.

Recovery was okay, i only needed Aleve once i got out of the hospital. I did have issues with my staples--but that's because i have metal allergies. Most folks wouldn't have that complication!

As for the main "issues," i now have BOTH Type 1 & 2 diabetes (some folks call it Type 3c, but i haven't been told mine is that yet).

Basically the 1/3 i have left can't quite make "enough" insulin to run my body, and i'm T2, because i have insulin resistance & my body can't/doesn't USE what little i make very well.

So i'm now on long-acting and short-acting insulin (Tresiba & Insulin Lispro), and an SGLT-2 Inhibitor (10mg Farxiga).

I don't need a lot of insulin--just 10-12 units of the long-acting, depending on how active i am. And 2-10 units of mealtime insulin, depending on what i'm eating & that activity level.

Being a diabetic without health issues so far, my doctors ALSO put me on a preventative blood pressure med & a statin (Lisinopril & Atorvastatin), as soon as they caught my diabetes, to PREVENT additional issues which can come with the diabetes long-term--that was also why we started the SGLT-2!

Because if folks go on SGLT-2's early/before kidney damage, and use them to "flush out" sugars via the kidneys, that type of med can PREVENT kidney damage in us diabetics, as long as we use them appropriately.

As far as long-term things?

I'm "mostly okay."

I DO have PTSD. The PTSD is NOT all (or even mostly!) from the pancreas stuff, but it's impacted by it--because of the nearly 10 years i had of "feeling like there was a potential ticking time bomb" in my pancreas for the nearly 10 years we knew the pnet was in there, and wondered if it was going to grow.

And "Diabetes Fatigue" from staying on TOP of it, and trying to stay healthy IS very real & wears you down from time to time.

Getting a good "team" of medical folks around you--An Endocrinologist & Diabetic Educator you can trust & work well with (AND who work well & closely together!) Is a giant help!

As is tapping in a Nutritionist with lots of experience in "complicated cases," to help you answer questions and figure out what works best for your specific body, to stay good & healthy.

And finding a Pancreas Surgeon/Oncologist who knows a LOT and who is also really open, honest, and who you can trust, is vital, too!

I "lucked into" my first great Diabetic Educator, and she was tge one who helped me start figuring out the best ways to fuel my body, but still be able to ENJOY my foods, while being safe & as healthy as possible.

And she was how i learned "what to look for" in my subsequent Diabetic Educators--because we DID develop such a great "working relationship" before she retired.

Always remember, post-surgery, as you go on, post-recovery, that if it feels like you "just aren't clicking" with a doctor, their nurses, or another provider on your team, and you aren't getting the type of answers & help managing your condition that you need?

It's 100% OKAY to find a different peactitioner who you DO feel is a "better fit" for you!

If you consistently hear, "I don't know" as an answer to your medical questions--but that provider ALSO doesn't HELP you to figure out the answers?

Find a NEW person for tgat spot on yoyr medical team!!!

Because this CAN be complicated and dificult to manage.

And you SHOULDN'T have to "figure it all out" all by yourself.

That's what a good medical team HELPS us to do!

@kathyfujii While I had consults with Mayo Rochester,(don’t recall surgeon’s name now) And Dr. Eric Liu, Boulder Colorado

I ultimately stayed within my state. Simply for the logistics of it all. I am not saying that is or was the smartest move… I ultimately went with Cleveland Clinic, and surgical oncologist Dr. Matthew Walsh. They are a high volume hospital with high volume robotic and laparoscopic pancreatic surgeries. I see a separate Net specialist oncologist and a gastroenterologist both associated with The James Cancer hospital in Columbus, Ohio as well.

If the s**t ever hits the fan I personally will go see Dr. Eric Liu in Colorado again.

Right now all are in agreement that if it can be cut out nothing but surveillance is needed in my case.

I hear it echoed again and again by them, that knowing when to treat, and when not to treat, is as important as how to treat.

Have you made a decision that you are comfortable with at this point?