1. < Neuroendocrine Tumors (NETs)

New PNET Question Re: Surgery (I'm in bit of a pickle)

Posted by Sue (PNET) @suziktodd, Jul 24 2:57pm

Hello, I’m 90 days post-diagnosis with a G1 (non-functional) pancreatic malignant neuroendocrine tumor (PNET) on my pancreas, measuring 1.3 cm (CT scan on 4/23 showed 1.2 cm; DOTATATE scan showed 1.4 cm). The consensus is surveillance, but I’d like to hear from others in a similar situation or with relevant experience. The tumor is located above the pancreatic duct, right in the middle, and I’m weighing whether open surgery is better than robotic/laparoscopic due to lower risks. It's in the middle, top section.

Additionally, my PET scan showed a low SUV uptake (3) in my T3 vertebra, alongside the pancreatic tumor (SUV 33). An MRI showed an unclear spot in the T3 area, but my radiologist and oncologist in NC didn’t recommend a spinal biopsy. A follow-up CT scan is scheduled for 8/12.

My question: In this scenario, do you think it’s safe to continue surveillance, or should I pursue surgery? I’ve found one surgeon willing to perform an open distal pancreatectomy with splenectomy. Should I proceed with surgery or wait? If waiting, any recommendations for treatments or monitoring in the meantime? I’m in NC, seeing a general oncologist I trust, but they’re not a NET specialist. My main concern is the unclear T3 finding and potential spread.

I went to a medical conference this last weekend and a suggestion was to ask for a bone scan to see if this is truly not a false positive, or if it 'met', and I only have a big cyst in my liver, no signs for mets in the liver.

I like all the providers I have seen, and just connected with a NET surgeon last Monday, not in my state.

I welcome all feedback and appreciate your insights. Thank you!

Also, anyone else feel like they can sleep off and on? I feel like every 2-3 days, I crash and need 12 hours.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Sue (PNET) | @suziktodd | 6 days ago
In reply to @frogsong "Hi Sue! I too was in the situation of watching waiting, which I did for 6mos...." + (show)
@frogsong

Hi Sue!
I too was in the situation of watching waiting, which I did for 6mos. My pnet showed “modest growth” from 1.8 to just under 2cm. I of course pursued surgery. I had a robotic distal pancrectomy. (Definitely easier surgery then whipple .) Surprisingly, it was discovered that I also had 6 of 8 lymph nodes positive.( surprised everyone) as it had not shown up on CT, MRI or Dotatate PET.
In hindsight, as it is always 20/20 I wish that I hadn’t waited for surgery.
My personal believe from experience is that robotic is the way to go. (In the hands of a highly skilled, highly trained, surgeon who preforms these surgeries frequently.) But again, just my personal experience and opinion.
Bottom line for me, is I wished that I hadn’t ultimately waited for 8 mos to have surgery. I had reasoned that I had no symptoms and felt fine. My Drs thought it prudent, so watchful waiting seemed to make sense…..and surgery and it’s unknown outcomes could possibly cause me to actually become diabetic, or have a fistula, or need to take digestive enzymes, all fears that never materialized in my case.
I am now 3 years 4 mos post diagnosis, and 2 1/2 post surgery, get 6 mos MRI surveillance. Still feeling great.
Best of luck to you, there is no one size fits all when it comes to NET. Make the best decision for YOU, get specialized Net Drs on your team to help guide you, and advocate for yourself at all times!!

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Hello FrogSong! This was extremely helpful! If you revisit this post, are you able to tell me what your grade was at the time? I would like to compare, as I will be getting that new scan on 8/12, so I am anxious to see if it has grown since 4.23, and my doctor's appointment is right after, so I hope they can see the results right away. I pushed for surgery (I am stubborn), but all but one surgeon said watch and wait, based on the NANET guidelines or NCAN guidelines, so besides the one surgeon, it was to wait it out. I happy to hear those big side effects never happened to you, GOD BLESS. So, amazing! Thank you for your feedback and sharing this with me, super helpful. I appreciate it.

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1 reply
Sue (PNET) | @suziktodd | 6 days ago
In reply to @lindabees "There is a net specialist at Duke, Michael Morse. There's one other in Concord, NC. You..." + (show)
@lindabees

There is a net specialist at Duke, Michael Morse. There's one other in Concord, NC. You can find their info at http://www.netrf.org under Find a Specialist.
Also, one of the top net surgeons is in Louisiana. Phillip Boudreaux. His info is also on the netrf site.
It's very important to seek out a net specialist as many general oncologists don't have the required knowledge to properly treat this disease, which is a very different animal.
Was the tumor biopsied? What is the ki67 rate? This will tell you how aggressive (or not) it is.

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Linda, Awesome - thank you for sharing. This is good information, and I did find a surgeon at Duke and he works with Michael Morse, so that is reassuring. Is the LA surgeon you are referring to female and in New Orleans? If so, she may been at the conference I was at last week in Alabama. I never heard of Phillip, so thank you for sharing this with me, I will also look him up. I feel like I am losing my mind at times, so this is helpful. The tumor was biopsied on 5/14, came back malignant. Pet Scan was 5/29 which confirmed the SVU was 33 for the pancreas, and the T3 lit up too. That is the part I am freaking out about. It was < 2 well differiencted. It looks like I have a cyst on my liver but no mets in my liver, but I am praying it doesn't spread! Is it just a matter of time? I am not on meds, therapy nada. Just watching right now, until the scan.

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lindabees | @lindabees | 6 days ago

Yes.. Dr Boudreaux is in Lousioana. I believe he may be part of a team with a woman net specialist but I'm not positive. Here's a link to his page. He's been operating on nets for decades.
https://jphilipboudreauxmd.com/

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frogsong | @frogsong | 6 days ago
In reply to @suziktodd "Hello FrogSong! This was extremely helpful! If you revisit this post, are you able to tell..." + (show)
@suziktodd

Hello FrogSong! This was extremely helpful! If you revisit this post, are you able to tell me what your grade was at the time? I would like to compare, as I will be getting that new scan on 8/12, so I am anxious to see if it has grown since 4.23, and my doctor's appointment is right after, so I hope they can see the results right away. I pushed for surgery (I am stubborn), but all but one surgeon said watch and wait, based on the NANET guidelines or NCAN guidelines, so besides the one surgeon, it was to wait it out. I happy to hear those big side effects never happened to you, GOD BLESS. So, amazing! Thank you for your feedback and sharing this with me, super helpful. I appreciate it.

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Hi Sue ,
My well differentiated tumor was initially Grade 1 on pathology, but then final pathology changed it to Grade 2 as my KI 67 was 6.7.
Good luck on your scan and I hope you get results straight away!) I think waiting for results is the worst, so much anxiety!)

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cardscrazysteve | @cardscrazysteve | 4 days ago
In reply to @suziktodd "Milford, thank you SO much for sharing this, now I have a better understanding of what..." + (show)
@suziktodd

Milford, thank you SO much for sharing this, now I have a better understanding of what they mean when they say additional risks and weighing the pros and cons. That is interesting about the removal and yes, my initial thought would be the same, to try to keep it. Now, I have a better understanding. All the best you as well.

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Hi Sue, welcome to connect. I had a single car accident on January 11 2024 and I was ok but docs said I should have that thing on my pancreas checked out.

I replied I know a surgeon. My wife just had a distal on Dec 1 2023 up at Mayo Rochester for pancreatic adenocarcinoma.

So on my wife’s 3 month check up in February is when things picked up for me. They suspected a PNET right away. I went through the testing that others have mentioned during the summer and my distal was scheduled for July 24.

Here’s what my surgeon said. We could watch it. It was 1.8 cm. But why. Take it out. And the spleen too, I didn’t question it. And the gallbladder too because if NETs came back the medicine you would take would have adverse reaction to the gallbladder so out it goes.

I had full open surgery as that gives the surgeon better insight as to the extent of the issues I was told. Since my wife had just gone through the same surgery I was not afraid.

I had no spread to 22 lymph nodes and margins came back clean and I was a number 3 so a low mildly aggressive cancer.

I’d at least schedule the surgery as that takes time too. My surgeon’s opinion was that there was no reason to wait.

I wish you all the best!

The fact that it takes time to work through everything I was already 6 mos after discovery. I had a PNET

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