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.

pampolo481 | @pampolo481 | Sep 1, 2023

I have a PNET also Stage 1 found via an EUS Ultrasound. I understand your feelings because I have been going through a lot of confusion with different guidance. My endocrinologist says it is functional because I have struggled with low blood sugar for 7 years. I have been reading a lot, also on Mayo Clinic site and Pancan.org . My endocrinologist wants it taken out. 1 am very scared of the surgery. She also referred me to an oncologist. I was almost ready to call MD Anderson in Houston. Then yesterday finally got to talk with the doctor who performed the Ultrasound. He said he understands my confusion. He also said I don’t need surgery or chemo, just need careful “watching”. That’s been my journey so far. Praying for you.

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dbamos1945 | @dbamos1945 | Sep 1, 2023

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET diagnosis is different. I’ve been told by drs that although my liver has many areas of concern that my liver blood tests show “normal” liver function and since our livers are quite large that enough of my liver is ok for me to function well. I hope this relieves your mind from “doom and gloom” thoughts. Be your best!

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1 reply
MB | @bellom | Sep 1, 2023
In reply to @lizzyeastwood "I had a very similar diagnosis in 2019, pnet incidentally found on a ct scan that..." + (show)
@lizzyeastwood

I had a very similar diagnosis in 2019, pnet incidentally found on a ct scan that was ordered for colon issues. I had a distal pancreatectomy in February of 2020. Tumor was well defined, 2.5 cm, nonfunctioning ki 67 >2 . Surrounding lymph nodes were clear. Surgeon managed to save my spleen. I have scans every 6 months but no recurrence of tumor. I have had no other treatments than the ct scans.
I know it’s terribly frightening at first but it gets better. Post surgery I’m feeling well. I have gastro issues frequently, but I mostly feel very lucky that the first scan was ordered and the tumor was found early.

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Did you have to get a PET scan before your surgery?

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1 reply
pavlina60 | @pavlina60 | Sep 2, 2023
In reply to @bellom "Did you have to get a PET scan before your surgery?" + (show)
@bellom

Did you have to get a PET scan before your surgery?

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@mb- I had a radioactive Fluorine 18- deoxyglucose PET scan and then Ga Dotatate which are necessary to assess the tumor positions, spread, etc. Especially Ga Dotatate is sensitive to NET ( mostly funclioning ones, which secrete serotonin and have receptors). So, yes, you need both 18F-DG in case of non- functioning and Ga dotatate - for the functioning, so the surgeon will know what to operate.

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pavlina60 | @pavlina60 | Sep 2, 2023
In reply to @dbamos1945 "I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET..." + (show)
@dbamos1945

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET diagnosis is different. I’ve been told by drs that although my liver has many areas of concern that my liver blood tests show “normal” liver function and since our livers are quite large that enough of my liver is ok for me to function well. I hope this relieves your mind from “doom and gloom” thoughts. Be your best!

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Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen, gallbladder and part of my stomach. On Lanreotide since March. One CT scan 3 mo later showed no new growth. Next on is on Sept.19. Fingers crossed Lan still works. I have some side effects like insomnia and hairloss, but other tha that still functioning well on a daily basis🦓💜

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2023
In reply to @pavlina60 "Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen,..." + (show)
@pavlina60

Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen, gallbladder and part of my stomach. On Lanreotide since March. One CT scan 3 mo later showed no new growth. Next on is on Sept.19. Fingers crossed Lan still works. I have some side effects like insomnia and hairloss, but other tha that still functioning well on a daily basis🦓💜

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I always appreciate you sharing your journey, @pavlina60. It offers encouragement and support to those "newbies" with NETs.

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RM | @mmerry | Sep 2, 2023
In reply to @hopeful33250 "Hello @bellom When you say, "I’m learning that I have yet so much to learn about..." + (show)
@hopeful33250

Hello @bellom

When you say, "I’m learning that I have yet so much to learn about this" you are expressing what most of us feel after a NET diagnosis. This diagnosis puts us all in a place of learning and connecting with others. I'm so glad that you found this forum. This is a great place to learn from the experience of others.

Some of your questions can only be answered by your medical team. Regarding finding a good surgeon in your area, I would highly recommend that you be willing to find a NET specialist, whether or not that specialist is local. Be open to considering a virtual appointment if you cannot find a NET specialist conveniently located nearby.

Mayo Clinic has three locations and there are NET specialists at each facility. If you are interested in a consultation, here is information for obtaining an appointment, http://mayocl.in/1mtmR63.

If an appointment at Mayo is not an option for you, here are names of NET specialists world-wide with the U.S. doctors listed by state,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Finding a NET specialist, rather than a general oncologist, is very important. NETs are a rare form of cancer, and they don't behave like typical cancers. Therefore, in order to get the best treatment, you need to have at least one consultation with a specialist. Often that specialist is willing to provide good direction for your team that is closer to home.

I am a 20-year survivor of NETs, having had my first surgery in 2003 and the last surgery in 2016. I know from experience how important a specialist can be.

What are greatest concerns right now? Are you maintaing your weight?

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I would like to thank you so much for this reply and the link for the NET specialists. I was diagnosed with a 1.7 cm PNET in the tail of my pancreas in January 2023 incidentally and it appears to be non functioning. I am in Canada and went to the one of best cancer hospitals in Toronto, Canada. They have run many tests and scans including PET scan and CT's but in 8 months I have yet to speak to one doctor. Not one. So I have no one to ask questions of such as "Shouldn't we do a biopsy or is it to risky to biopsy when the NET is in the tail" .
They have put me on the 6 month watch and wait scan approach which I am grateful for but sure would like to have a doc to ask basic questions of. So thanks for this list as I will make my way to one of the Canadian docs on this list.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2023
In reply to @mmerry "I would like to thank you so much for this reply and the link for the..." + (show)
@mmerry

I would like to thank you so much for this reply and the link for the NET specialists. I was diagnosed with a 1.7 cm PNET in the tail of my pancreas in January 2023 incidentally and it appears to be non functioning. I am in Canada and went to the one of best cancer hospitals in Toronto, Canada. They have run many tests and scans including PET scan and CT's but in 8 months I have yet to speak to one doctor. Not one. So I have no one to ask questions of such as "Shouldn't we do a biopsy or is it to risky to biopsy when the NET is in the tail" .
They have put me on the 6 month watch and wait scan approach which I am grateful for but sure would like to have a doc to ask basic questions of. So thanks for this list as I will make my way to one of the Canadian docs on this list.

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Hi @mmerry

If you read through the posts in the NETs group, you will see that many of the members are also on the "wait and watch" approach. It seems to be a common approach. Most patients who are following this protocol feels like you do, they want answers, a biopsy or just something to make sure they know what is going on. I am glad to hear that you are with a good cancer center in Toronto.

I'd love to hear from you again. Will you continue to post updates and questions as you continue on this NETs journey?

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1 reply
RM | @mmerry | Sep 2, 2023
In reply to @hopeful33250 "Hi @mmerry If you read through the posts in the NETs group, you will see that..." + (show)
@hopeful33250

Hi @mmerry

If you read through the posts in the NETs group, you will see that many of the members are also on the "wait and watch" approach. It seems to be a common approach. Most patients who are following this protocol feels like you do, they want answers, a biopsy or just something to make sure they know what is going on. I am glad to hear that you are with a good cancer center in Toronto.

I'd love to hear from you again. Will you continue to post updates and questions as you continue on this NETs journey?

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Thanks so much and yes I will for sure post updates and questions. I have my next CT scan in November and following that I see making my way to the US to one of the NET docs on that list to look for a 2nd opinion. Thanks again.

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dbamos1945 | @dbamos1945 | Sep 2, 2023
In reply to @pavlina60 "Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen,..." + (show)
@pavlina60

Same here - PNET grade 2, Stage 4. Had surgery for removal of pancreatic tail, spleen, gallbladder and part of my stomach. On Lanreotide since March. One CT scan 3 mo later showed no new growth. Next on is on Sept.19. Fingers crossed Lan still works. I have some side effects like insomnia and hairloss, but other tha that still functioning well on a daily basis🦓💜

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Pavlina60: I sympathize with your insomnia… been there! My immediate solution is OTC Spring Valley extra strength 10mg adult Melatonin sleep support GUMMY!!! It is not logical but I chew 2 and sleep in 1/2 hr!
I hope you try it my friend. Only the best for you!

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