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.

vmchow | @vmchow | Sep 4, 2023
In reply to @mmerry "Hi there. I hope you are keeping well. I also have a NET in the tail..." + (show)
@mmerry

Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

Jump to this post

An MRI found a 1.7 tumor in the trail of my pancreas. My doctor immediately sent me for a fine needle endoscopic biopsy. Pathology confirmed that the tumor expressed chromogranin. Dota petscan confirmed a PNET. Wait and watch for one year.... No change, but i opted for a distal pancreatomy saving the spleen. Two months post surgery, I'm doing pretty well. I'm 65. I wanted the surgery while i was still relatively fit instead of waiting... I'm happy to chat with you about my experience of your like to contact me, but my case was pretty straight forward and I've been lucky so far. I think people need to hear the good stories as well as the challenging ones. 🙏 This cancer can be treated. And you're not alone on the journey.

REPLY
1 reply
pavlina60 | @pavlina60 | Sep 4, 2023
In reply to @mmerry "Hi there. I hope you are keeping well. I also have a NET in the tail..." + (show)
@mmerry

Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

Jump to this post

My biopsy was done by a Gastroenterology doctor. It showed Grade 2 NET. Then I had a Ga Dotatate PET scan and Less than a month later I had surgery by a HPB ( hepatobilliary sutgeon).

REPLY
RM | @mmerry | Sep 3, 2023
In reply to @colleenyoung "Welcome @kt348. Finding out that you have cancer sends one into a tailspin. It's so hard..." + (show)
@colleenyoung

Welcome @kt348. Finding out that you have cancer sends one into a tailspin. It's so hard to make decisions about when and what to do when the answers are clear cut. I can only imagine your fear and devastation.

To help you connect with others, like @sturns @elm60 @dbmenger @musicflowers4u @kaforester3, who also have pancreatice neuroendocrine tumors, I added your discussion to the Neuroendocrine Tumors group as well as the Pancreatic Cancer group.

It sounds like the tumor was found incidentally while getting a CT scan for something else. This helped your team find it early while it is still stage 1. That's good. Given that it is 1cm in size, well sectioned, slow growing, it sounds like you made a good decision with all the information available to you.

Are you being seen by a NETs specialist? Would you feel more comfortable with your decision if you got a second opinion?

Jump to this post

Hi there. I hope you are keeping well. I also have a NET in the tail of my pancreas. It is 1.7 cm. My NET Doctor is telling me it is too risky or hard to do a biopsy in the tail but I see you were able to have one done. Did they ever tell you it was quite risky or does it seem like common practicee? This “risky” comment was feedback from the NET oncologist. What type of doctor is the one who performs the biopsy? Thank you so much .

REPLY
2 replies
pavlina60 | @pavlina60 | Sep 2, 2023
In reply to @dbamos1945 "Pavlina60: I sympathize with your insomnia… been there! My immediate solution is OTC Spring Valley extra..." + (show)
@dbamos1945

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!

Jump to this post

Thank you for the suggestion! But I take Warfarin ( blood thinner) and melatonin is not recommended :(. I try to get myself to sleep with a glass of warm almond milk and a spoonfull of honey..

REPLY
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🦓💜

Jump to this post

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!

REPLY
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?

Jump to this post

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.

REPLY
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.

Jump to this post

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?

REPLY
1 reply
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?

Jump to this post

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.

REPLY
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🦓💜

Jump to this post

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

REPLY
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!

Jump to this post

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🦓💜

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