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 15, 2023
In reply to @smt "Hopefully yours will heal a lot quicker then mine, I just wanted to let you know..." + (show)
@smt

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.

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Thanks so much. Mine was only 20ml for 2 weeks then doubled to 40ml so they are keeping it in for now. I think the concern is that it was low then doubled instead of decreased.

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Laurell | @laurell410 | Feb 15, 2023
In reply to @rockchick "My surgeon was Dr Alice Wei and since it was cured with surgery I haven't needed..." + (show)
@rockchick

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.

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Dr. Reggie Saldivar is the doctor that I see and his nurse Debbie, that are in supportive care, they are wonderful

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1 reply
rockchick | @rockchick | Feb 15, 2023
In reply to @laurell410 "Dr. Reggie Saldivar is the doctor that I see and his nurse Debbie, that are in..." + (show)
@laurell410

Dr. Reggie Saldivar is the doctor that I see and his nurse Debbie, that are in supportive care, they are wonderful

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Memorial Sloan Kettering rocks in general. Lots of great people. After my surgery, there were no more double rooms so they gave me the VIP PH suite with a living room, view of the 59th St Bridge, private concierge, maintenance that cleaned the room twice daily, and gourmet food though I couldn't really eat. The staff teased that I was a celebrity since I had the celebrity room.

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pete1962 | @pete1962 | Feb 18, 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.

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Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out.

I had a wipple procedure in March 2019 which went very successful; they caught everything and I was back to work in 3 months, living the rest of my life on Creon and Omeprazol.

Unfortunately at my last scan in Dec 22 they found liver lesions, now confirmed as NET tumor. Did not have a scan for 2 years due to work / covid but I wish I had.

Found this forum on my research for my first oncologist appointment on Feb 27. Thanks a lot for all the info which is very helpful.

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2 replies
rockchick | @rockchick | Feb 18, 2023

So sorry to hear about your reoccurrence. Praying for you.

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rockchick | @rockchick | Feb 18, 2023
In reply to @pavlina60 "I am having PET scan with Ga dotate on Jan.26, surgery on Feb.1. Mine is too..." + (show)
@pavlina60

I am having PET scan with Ga dotate on Jan.26, surgery on Feb.1. Mine is too big ( 16cm) for laparoscopic surgery. I just pray it will go well!

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Praying for you.

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rockchick | @rockchick | Feb 18, 2023
In reply to @pete1962 "Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out. I..." + (show)
@pete1962

Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out.

I had a wipple procedure in March 2019 which went very successful; they caught everything and I was back to work in 3 months, living the rest of my life on Creon and Omeprazol.

Unfortunately at my last scan in Dec 22 they found liver lesions, now confirmed as NET tumor. Did not have a scan for 2 years due to work / covid but I wish I had.

Found this forum on my research for my first oncologist appointment on Feb 27. Thanks a lot for all the info which is very helpful.

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And please get regular scans after this. I am so worried about any kind of reoccurrence that I plan to have one every three months. There is no way I could not worry and go 2 years!

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pavlina60 | @pavlina60 | Feb 18, 2023

Update- surgery on Feb.1st went well. My tumor was humongous - 1.8 kg! Succsessfully removed with my stomach left untact! Also had galldladder and spleen removal, plus a number of liver metastatic NETs and a total histerectomy due to endometrial carcinoma ( unrelated to NET)(which was incidentally discovered during a PET scan). Out of the hospital on Feb.7. Recovering at home. Still have not seen my oncologist (March 7) to see what treatment I need.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2023
In reply to @pete1962 "Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out. I..." + (show)
@pete1962

Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out.

I had a wipple procedure in March 2019 which went very successful; they caught everything and I was back to work in 3 months, living the rest of my life on Creon and Omeprazol.

Unfortunately at my last scan in Dec 22 they found liver lesions, now confirmed as NET tumor. Did not have a scan for 2 years due to work / covid but I wish I had.

Found this forum on my research for my first oncologist appointment on Feb 27. Thanks a lot for all the info which is very helpful.

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Hello @pete1962 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found this forum. It is good to connect with others who have had this type of cancer. I'm sure you will find support and encouragement.

I have had three surgeries for NETs in the upper digestive tract over the past 20 years and my last surgery was about 7 years ago. I now have follow-up endoscopies as well as MRIs of the liver and pancreas.

I see that liver lesions were found on a scan in December. You mentioned that they were confirmed as NETs. I'm wondering how this was determined. Did you have a liver biopsy? Also, how are you feeling now?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2023
In reply to @pavlina60 "Update- surgery on Feb.1st went well. My tumor was humongous - 1.8 kg! Succsessfully removed with..." + (show)
@pavlina60

Update- surgery on Feb.1st went well. My tumor was humongous - 1.8 kg! Succsessfully removed with my stomach left untact! Also had galldladder and spleen removal, plus a number of liver metastatic NETs and a total histerectomy due to endometrial carcinoma ( unrelated to NET)(which was incidentally discovered during a PET scan). Out of the hospital on Feb.7. Recovering at home. Still have not seen my oncologist (March 7) to see what treatment I need.

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Hello @pavlina60 and welcome to the NETs discussion on Mayo Connect. I appreciate you sharing your update after surgery. You had a lot of issues addressed during the surgery and it sounds like it went well.

How are you feeling now? Are you able to eat comfortably or do you have digestive issues?

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