Need more information on net in head of pancreas

Hi @pamsbass, I had a Pyloric preserving pancreaticoduodenectomy (modified Whipple) liver resection and liver ablation in 2019 to remove the primary NET from the head of my pancreas and two from my liver. The NET on the head of my pancreas was small, only 1 cm. My symptoms first started in 2006 when I was 36 and I was incorrectly diagnosed with IBS, and other incorrect diagnosis as my symptoms progressed. I wasn’t correctly diagnosed until 2012. The first three surgeons I saw recommended watching and waiting as they said where the NET was growing made the Whipple surgery more difficult. From 2012 to 2019 my primary never grew much, but new spots on my liver showed up on scans in 2018. My primary PNET was functioning and made my quality of life horrible for 12+ years. The recovery from surgery was a lot harder than I was expecting but for me very worth it as my quality of life greatly improved after the surgery. All of my symptoms were gone after the surgery. I was in hospital for 14 days, went home with one drain still in as I had a pancreatic leak that was draining over 200ml of fluid a day. The drain healed on its own at 4 months post-surgery. I currently have no signs of disease outside of my liver, there is one spot where my ablation grew back that is still being watched with yearly scans. I took Creon after my surgery until my drain healed, then I didn’t need it, but I am now back on Creon as my enzymes were very low. Over all for me (as each case is different), having the surgery has been a gift I am grateful for each day as it gave me my quality of life back after suffering for years. My advise is to make sure you are seeing a NET specialist and do not hesitate to seek second options so you have enough information to feel comfortable with the decisions on your treatment plan. Wishing you well.

Thank you so much trying to find out all I can they do yea t to do whipper on me they don’t think I would make it am a diabetic I go to dr in New Orleans

To people in the NorthEast
Upstate Cancer Center now offers robotic surgery for Wipple procedure.
Dr.Dhir is an excellent surgeon; he did my distal pancreatectomy last year ((Feb.1). I do not have enough words to express my gratitude and I am in awe with his skills, proffesionalism and patient care!!

Upstate News
whippled
Upstate now offers robotic option for Whipple procedure
Upstate Medical University now offers the robotic Whipple procedure, a complex surgery used to treat certain types of pancreatic cancer as well as some other conditions.

The robotic Whipple procedure is a minimally invasive version of the Whipple procedure or pancreaticoduodenectomy, performed to treat pancreatic cancer.

Either operation involves removing the head of the pancreas, duodenum (first part of small intestine), bile duct, lymph nodes, gallbladder (if present), and sometimes part of the stomach, and then reconnecting the organs so that food can be properly digested.

It can also be used to treat benign or precancerous conditions of the head of the pancreas, neuroendocrine tumors at the head of the pancreas, ampullary cancers, and duodenal cancers.

Upstate joins a small but growing group of hospitals to offer the robotic Whipple. In Upstate New York, only the University of Rochester and Roswell Park in Buffalo offer the robotic procedure.

There were less than 18,000 Whipple procedures completed from 2004-2017 in the United States, according to the National Cancer Database. Of those, only 12 percent were minimally invasive (done laparoscopically or with robotic technology), with less than 400 robot-assisted procedures in total. A high-volume surgical center might see 10 to 20 Whipple-appropriate cases in a year.

Upstate surgeon Mashaal Dhir, MD, FACS, performs both the traditional and robotic Whipple procedures here. He said the hospital started doing the robotic procedure about four months ago and he has performed it on four patients. One had a pre-cancerous condition at the head of the pancreas, one had a neuroendocrine tumor and two had ampullary cancers, located where the bile duct and pancreatic duct join and empty into the small intestine.

The patients tend to feel less pain and it appears their body goes through less stress, so they get back to their baseline faster," Dhir said, not that some patients left three to six days after surgery,

Dhir said only 10 to 20 percent of patients with pancreas cancers qualify for the traditional Whipple procedure and even fewer qualify for the robotic version. Dhir said candidates must have early-stage disease in the region where the bile duct and pancreas ducts meet and be in good enough health to withstand a long surgery, among other considerations.

In the traditional Whipple, the surgeon makes a large abdominal incision to remove and reconstruct affected organs and tissues. For the robotic Whipple, the surgeon operates through several small incisions, using robotic arms equipped with special instruments and a tiny camera. The robotic arms can move more precisely and with a better range of motion than a surgeon's hands, while the camera provides a more complete view of the abdominal interior. Because the procedure is less invasive, patients experience fewer complications and recover more quickly.

The robotic procedure, however, is very complex, and Dhir said it takes longer than the traditional version, anywhere from 8 to 12 hours. Dhir said the team has to be ready for many outcomes, including any problems that would cause them to have to revert to the traditional method.

“We have to be very careful and use meticulous dissection,” he said. “We have to plan out every move and we always have to stay one step ahead.”

Dhir said offering this procedure puts Upstate on the map with centers like Sloan Kettering or Roswell. Previously, he said some of his patients traveled to a big center to have the robotic surgery done.

“Having this state-of-the-art procedure uplifts our program and allows us to serve our patients better because we have the expertise at home,” he said.

To learn more about the robot-assisted Whipple procedure, check out the Informed Patient Podcast.

Caption: Mashaal Dhir, MD, FACS, now offers a robotic-assisted Whipple procedure.

Written by Jean Albanese
Published on Wednesday, January 17, 2024
Send to a FriendPrint PageFacebookTwitterShare
More Upstate Information
All contents copyright © 1988-2024, SUNY Upstate Medical University, Syracuse, NY
Privacy Policy | Notice of Privacy Practices | Emergency Information | Freedom of Information | Accessibility Statement | Non-discrimination Statement | Price Transparency
Contact Kathleen Froio with questions about the content of this page.
Top

I found out the PNET (pancreatic neuroendocrine tumor) on the head of my pancreas last year in May during an MRI scan for my kidneys. It was an incidental finding.

After multiple imaging including a dota-tate scan in September, the specialists at Johns Hopkins told me to wait six months and do another PET scan, since it was small and the tumor is well differentiated (slow-growing).

However, my abdominal pains and back pains come occasionally. I attended a lifestyle center program on disease reversal and since then I noticed that with diet and lifestyle changes, symptoms are almost next to none. If it wasn't for that MRI scan in May, they never would have known about the PNET and would have constantly given me anti-acids.

Today, I rarely have symptoms thanks to a lifestyle change. I'm learning a lot more about PNET after signing up for a group and they sent me reading materials. There is still a lot to learn, especially with insurance coverage and different hospital's procedures.

Finding the right doctor definitely helps: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I have a small 5 mm nonfunctioning well differentiated PNET located on the head of the pancreas. I am currently on surveillance. What were the changes to diet and lifestyle that you made? I have dieted and lost weight intentionally and I no longer drink alcohol. I am taking Creon and Colestid (my gall bladder was removed years ago and the Colestid helps with bile dumping). After finding the PNET in March 2023 in an exploratory EUS because of years of diarrhea, I had an incidental finding of an aggressive breast cancer on a subsequent CT. I had surgery, chemo and I will have Proton treatment for the breast cancer.
Please let me know about the changes you made.
Thank you.

Applying the 8 Laws of Health to my lifestyle and changing my diet to non-dairy, less refined sugars, and no oils when I cook.

Where do you find the 8 Laws of Health? Is it in a book?

Wow. As always, thank you for sharing. I learn so much from you. Thank you for dumbing down the complicated words to words that I can actually, ok mostly, understand. I only Googled a few words. Thanks Pavlina.

I am walking on this road since December 9, 2022 . My best advice is - listen to your body, and be positive! Stay physically active as much as you can, and try to look at your body from the side- this saved me. And Dr.Dhir did my pancreatic surgery, along with a team from ginecologic oncology ( as I had hysterectomy due to endometrial cancer). It was an open surgery, as they did not have the robotic capability yet. But Dr.Dhir is an amasing surgeon with steady hands and big heart!