1. < Neuroendocrine Tumors (NETs)

Scared - Suspected NET on tail of the pancreas

Posted by rockchick @rockchick, Jan 6, 2023

Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info - are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc...is involved?

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

rockchick | @rockchick | Feb 14, 2023
In reply to @lu7 "I had mine removed roboticly by a very experienced surgeon. The recovery was very quick. Distal..." + (show)
@lu7

I had mine removed roboticly by a very experienced surgeon. The recovery was very quick. Distal pacreatectomy and splenectomy since my tumor invaded the spleen. Minimal pain. But find a surgeon who does alot of them. Robotics is a skill.

Jump to this post

Thanks I did. My surgeon at Memorial Sloan Kettering is an expert on NETs and the robotic surgery, so was blessed.

You were lucky, there was no pain. I was in CRAZY pain and on painkillers for 2 weeks and have a fistula now, so drain still in. I am still recovering 3 weeks later...

REPLY
1 reply
rockchick | @rockchick | Feb 14, 2023
In reply to @wifey2021 "The anxiety is awful. We have forgotten how to plan for the future. Cancer really does..." + (show)
@wifey2021

The anxiety is awful. We have forgotten how to plan for the future. Cancer really does take over your life. Take care!

Jump to this post

I know. I am afraid for any more scans. 'Cause I can't go through this ever again.

REPLY
lu7 | @lu7 | Feb 14, 2023
In reply to @rockchick "Thanks I did. My surgeon at Memorial Sloan Kettering is an expert on NETs and the..." + (show)
@rockchick

Thanks I did. My surgeon at Memorial Sloan Kettering is an expert on NETs and the robotic surgery, so was blessed.

You were lucky, there was no pain. I was in CRAZY pain and on painkillers for 2 weeks and have a fistula now, so drain still in. I am still recovering 3 weeks later...

Jump to this post

I'm so sorry for the long pain! I had my drain for about a month. Uncomfortable, but lucky for sure. Be sure to keep up with the follow up scans. I skipped and delayed because my husband had heart surgery, and I was "too busy". When I finally got around to it, 6 months late, I had 30-40 metastasis in my liver that were growing fast. Best wishes for your recovery!

REPLY
smt | @smt | Feb 14, 2023
In reply to @rockchick "Thanks all! Had the surgery on January 24th, 2023 and Doctor was right. It was a..." + (show)
@rockchick

Thanks all! Had the surgery on January 24th, 2023 and Doctor was right. It was a non-functioning neuroendocrine tumor. Fortunately, a bit smaller than previously thought - 1.6cm. They got it all and took the tail of the pancreas while preserving the spleen. (If you can, push for that as many oncologist surgeons just want to take your spleen because it is easier. But they don't always have to and safer to have a spleen with all the potential pandemics coming.)

There was no spread. Have to be checked every few months for a while.

Though mine was robotic surgery, it was a lot more painful than they said it would be. Due to a small fistula, I am also still on a drain 3 weeks later, so not thrilled about that. But reminding myself that at least they found it early and got it out. I DO have a bit of "scan-xiety" now though. Need a mammogram and am afraid.

Jump to this post

Very good news that there wasn't any spread. I also had a fistula after my Whipple surgery, which healed on its own at four months. Hopefully yours will heal quickly. Wishing you well on your recovery.

REPLY
1 reply
rockchick | @rockchick | Feb 14, 2023
In reply to @smt "Very good news that there wasn't any spread. I also had a fistula after my Whipple..." + (show)
@smt

Very good news that there wasn't any spread. I also had a fistula after my Whipple surgery, which healed on its own at four months. Hopefully yours will heal quickly. Wishing you well on your recovery.

Jump to this post

Oh my! Did you have this dern drain in that long? I can't bear it. I can't go anywhere it's so uncomfortable.

REPLY
smt | @smt | Feb 14, 2023

Hopefully yours will heal a lot quicker then mine, I just wanted to let you know it is possible for them to heal on their own. Mine was draining around 230ml each day, it went down to 80ml for one day then completely stopped the following day. I didn't really have much pain from the drain it was mostly inconvenient, but I was very happy to see to go. Hang in there.

REPLY
1 reply
magnolia12 | @magnolia12 | Feb 15, 2023

I don't know how to even get help.

My GI doctor sent me to a pancreas specialist for my pancreas mass and then he lied in my records. I tried another one who didn't acknowledge the mass, skipped it over entirely, and left oit my history from the evaluation, leaving me at risk.

Can I ask where the doctors are who take you seriously?

Do you have symptoms? Maybr that's why they want to remove it.

REPLY
1 reply
kim1965 | @kim1965 | Feb 15, 2023
In reply to @magnolia12 "I don't know how to even get help. My GI doctor sent me to a pancreas..." + (show)
@magnolia12

I don't know how to even get help.

My GI doctor sent me to a pancreas specialist for my pancreas mass and then he lied in my records. I tried another one who didn't acknowledge the mass, skipped it over entirely, and left oit my history from the evaluation, leaving me at risk.

Can I ask where the doctors are who take you seriously?

Do you have symptoms? Maybr that's why they want to remove it.

Jump to this post

@magnolia12
Can I ask if you spoke with a NET Specialist? If not, I have been reading these forums for months to help me wife, and we have NET Specialist and a multi-disciplinary team that has cared for her for 9 months, managing the chemo therapy (pill version), a very effective chemo plan that has reduced the mass on the pancreas by 70%, and the liver which had too numerous lesions to count, to now around 20, which they are ready to go in for surgery on March 1st, and get as much as they can, and our prognosis is good being more of a maintenance keeping the slow growing NET at bay. So the most important bit of advice is to get a NET Specialist, and Mayo is one of the best, there must of been some miscommunication with your situtation. Good luck on your journey, let us all know if we can help? Here is a link online to find a NET Specialist if you need it: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

REPLY
Laurell | @laurell410 | Feb 15, 2023
In reply to @rockchick "Oh. and I also have an amazing team at Memorial Sloan Kettering in NYC. I was..." + (show)
@rockchick

Oh. and I also have an amazing team at Memorial Sloan Kettering in NYC. I was also blessed to be in a Penthouse suite for a week after surgery because there were no other rooms left and then I tested positive for Covid. I was initially devastated by that but then realized it was God's way of giving me extra time with 24-7 care to heal, so Covid diagnosis ended up being a hidden blessing.

Jump to this post

Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street) is the nurse who gives me my monthly injections of Octreotide

REPLY
1 reply
rockchick | @rockchick | Feb 15, 2023
In reply to @laurell410 "Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street)..." + (show)
@laurell410

Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street) is the nurse who gives me my monthly injections of Octreotide

Jump to this post

My surgeon was Dr Alice Wei and since it was cured with surgery I haven't needed anyone else. I am now going to start using the Integrative Medicine Team though.

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