1. < Neuroendocrine Tumors (NETs)

Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

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

kattz1 | @kattz1 | Jan 26, 2023

I also have pnets on the tail end of my pancreas and liver I'm stage 4,, please message me🥰🤗🌹

REPLY
2 replies
kim1965 | @kim1965 | Jan 27, 2023
In reply to @kattz1 "I also have pnets on the tail end of my pancreas and liver I'm stage 4,,..." + (show)
@kattz1

I also have pnets on the tail end of my pancreas and liver I'm stage 4,, please message me🥰🤗🌹

Jump to this post

My wife @kim1965 was diagnosed with NET on tail of pancreas and numerous tumors on liver in April 2022. She was introduced to the Cancer Care Team at Froedert Hospital in Milwaukee. She immediately was put on monthly Lanreotide shots, and started chemotherapy (pills), and now has completed 9 cycles. The tumors have been greatly reduced to the point that surgery to remove what’s left is possible on March 1st. It should be only a mtn issue after that with only continuing the Lanreotide. It is a long fight but we highly recommend a NET specialist, team based group to figure out the best treatment plan, and you too can kick this issue as our doctors mentioned “decades”. Let us know how we can help?

REPLY
kattz1 | @kattz1 | Jan 27, 2023

Hi Kim
I'm so excited for you! I go to the MD Anderson here in az I love my Dr he listens and cares. I also was on the shots @120 ml. For 6 months stopped for two. (very bad reaction). Then started again @ 20 ml for 3 months in November I was taken off the shots all together.
My pancreas shrunk a little, my liver tumors have stabilized, my next appointment is 3/23 . Please wish me luck on this appt everything is still ok. 🥰🤗

REPLY
snd | @snd | Jan 27, 2023
In reply to @elm60 "Hi @kt348 I had a similar experience during a endoscopic ultrasound of a liver biopsy. My..." + (show)
@elm60

Hi @kt348
I had a similar experience during a endoscopic ultrasound of a liver biopsy. My less than 1cm tumor 6 mm x 7 mm, ki 67 <3% stage 1, was found in my neck of the pancreas. I also had a history of GI issues all my life. I actually went in for a Whipple at the urging of my hepatologist, since everything goes fast with me..and the surgeon ended up doing a partial Pancreatectomy, but he was unable to see the tumor! I actually waited another 9 months and the tumor was picked up on a CAT scan and had grown. I waited another 7 months for better insurance and went to Mayo Clinic in Jacksonville for surgery and they also have a NET Specialist Oncologist as well! They actually found two tumors, one on the head and one on the remaining tail. I had a modified Whipple leaving the head of the pancreas, taking the remaining tail, spleen, gallbladder and part of the stomach, as the prior surgeon attaches the pancreas to my stomach wall! Both surgeries were very tough. I was 59 at my last surgery. I recently developed diabetes type 3c as a result of pancreatic insufficiency. Almost 3 years out in February, I am doing well. Be sure to check out other NET facebook groups as there are others out there facing your same situation! Please get a NET Specialist and opt for the watch and wait! All the best!

Jump to this post

After they removed the tumor they found another two ?

REPLY
1 reply
EM | @elm60 | Jan 27, 2023
In reply to @snd "After they removed the tumor they found another two ?" + (show)
@snd

After they removed the tumor they found another two ?

Jump to this post

They saw one tumor on 5/2017 via an EUS. It was 6x10mm and biopsied to confirm a pancreatic NET. The 1 surgeon did a partial pancreactomy removing the neck, but missed the tumor. I had a FDG PET scan on4/2018 and they saw the same missed NET and it had grown. I waited for better insurance so I had a partial Whipple at Mayo on 2/2019 and the surgeon found the original tumor that was in the tail and found a second tumor on the head of the pancreas. I guess if I didn’t have the second surgery the second tumor may not have been detected, unless another PET was done. We believe I don’t have receptors. I get yearly MRI and labs for follow up!

REPLY
kattz1 | @kattz1 | Jan 29, 2023
In reply to @bridget1980 "Hi, I’m new to all this and I’m pretty scared. Pancreatic Neuroendocrine tumor was found by..." + (show)
@bridget1980

Hi,
I’m new to all this and I’m pretty scared. Pancreatic Neuroendocrine tumor was found by accident last month. It’s very small, about 1.5 cm. Getting PET Gallium on 1/26. Had an appointment with surgeon last week and was told about the whipple procedure which scared me more than cancer. I’m only 42 and have a 3 year old little boy. I’m scared. Any advice, I’m very new to this process

Jump to this post

Would you be willing to message me at my email?

REPLY
1 reply
kattz1 | @kattz1 | Jan 29, 2023
In reply to @kattz1 "Would you be willing to message me at my email?" + (show)
@kattz1

Would you be willing to message me at my email?

Jump to this post

I'm stage 4 pancreatic and liver cancer, tail end pnets I've had no surgeries,radiation very little chemo

REPLY
wifey2021 | @wifey2021 | Feb 2, 2023

Hi All,
I have not been a member of the group for very long. My husband's incidental pNet finding occurred in September '22 and we began the long march toward understanding NETs, that most of you are aware of. He was not having any symptoms and the PET scan only showed the pNet (in the tail) and a couple of potential lymph nodes in his mesentery.

Two weeks ago, the pNet was resected, along with his spleen in an open surgery. The lymph nodes turned out to be nothing. His pathology showed a G1 with ki67 of <3% and none of the nodes examined (13 of them) showed any signs of cancer. There was also an IPMN hanging out with the neuroendocrine tumor. The 6-month dotatate 68 followup PET scan has been changed to a regular CT.

He is doing well post-surgery and we are beginning to learn how to plan for a future again. I share this because success stories meant so much to me when we were struggling with his diagnosis and what the future held. I hope it can help someone else.

I am so thankful for The James Cancer Center at OSU (hope I'm allowed to mention them), the care was exceptional. I encourage everyone to find a NET specialist to help them.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2023
In reply to @wifey2021 "Hi All, I have not been a member of the group for very long. My husband's..." + (show)
@wifey2021

Hi All,
I have not been a member of the group for very long. My husband's incidental pNet finding occurred in September '22 and we began the long march toward understanding NETs, that most of you are aware of. He was not having any symptoms and the PET scan only showed the pNet (in the tail) and a couple of potential lymph nodes in his mesentery.

Two weeks ago, the pNet was resected, along with his spleen in an open surgery. The lymph nodes turned out to be nothing. His pathology showed a G1 with ki67 of <3% and none of the nodes examined (13 of them) showed any signs of cancer. There was also an IPMN hanging out with the neuroendocrine tumor. The 6-month dotatate 68 followup PET scan has been changed to a regular CT.

He is doing well post-surgery and we are beginning to learn how to plan for a future again. I share this because success stories meant so much to me when we were struggling with his diagnosis and what the future held. I hope it can help someone else.

I am so thankful for The James Cancer Center at OSU (hope I'm allowed to mention them), the care was exceptional. I encourage everyone to find a NET specialist to help them.

Jump to this post

Hello @wife2021

As you can see, I moved your post back to the discussion group where you originally posted so that others could see your good news. You are right when you say that success stories mean a lot. Your post is so encouraging for all of us with NETs to know that surgical procedures can be helpful and can help us create a sense of a future with hope!

I can understand your thankfulness for the NET specialist that you saw. It is always the best to seek out the most experienced NET specialist when you are dealing with this rather rare form of cancer. You are fortunate to have found such a specialty center.

Do you know what type of follow-ups will be done going forward?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.