1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

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

suzyis7 | @suzyis7 | Nov 20, 2022
In reply to @hopeful33250 "@suzyis7 Your experience of an "incidental finding" is so common among us NET patients. My diagnosis..." + (show)
@hopeful33250

@suzyis7

Your experience of an "incidental finding" is so common among us NET patients. My diagnosis was the same. No symptoms, but a routine EGD for GERD/hiatal hernia revealed the first NET in the duodenal bulb. Since the first surgery, I've had two more surgeries. My surgeries were in 2003, 2005 and 2016.

I look forward to hearing from you again. I hope you will update me with any findings from your PET scan today. Will you let me know of any questions you have as you walk this NETs journey?

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Good news concerning my PET Scan! No other neuroendocrine tumors found.
Prayers for all of us on this NETs journey.

REPLY
2 replies
suzyis7 | @suzyis7 | Nov 18, 2022

PET Scan findings today: Confirms neuroendocrine on tail of Pancreas.
No other neuroendocrines found.
Ancillary chest findings: small sub pleural nodules along the posterior of right lower lobe at 6 mm.
Scattered diverticulitis and moderato coronary artery calcifications.
Also on left lobe of liver a 5.3 cm lesion (This has been found on various other test several times). Should there be more follow-up on the liver? Will ask oncologist.

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dbamos1945 | @dbamos1945 | Nov 18, 2022
In reply to @lidiana "Hello 👋🏻 @hopeful33250 CA 19.9 progressively getting higher and symptoms and imaging findings are more… what..." + (show)
@lidiana

Hello 👋🏻 @hopeful33250 CA 19.9 progressively getting higher and symptoms and imaging findings are more… what should I’ll be looking forward to? I’m really sick…

Any feedback would be greatly appreciated 🙏🏻 blessings of healing for everyone 🌼❤️‍🩹🤲🏻

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I’m new to this world of Oncology as well. My dx NET tumor with metastasized to liver. I’m in first week of treatment and have had few side-effects so far, but feel scared of what lies ahead.
My best to you and hope you can be optimistic on this journey of NETs.
Hermit in Hemet
REPLY
1 reply
mcrey1 | @mcrey1 | Nov 18, 2022
In reply to @smt "I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after..." + (show)
@smt

I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.

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Thankyou for your update. I hope to go 10 years without surgery because my NET which is on the head of the Pancreas is non functional at this time.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 18, 2022
In reply to @suzyis7 "No symptoms.....incidental finding from complaints of right side pain. Yes, my PET scan is today and..." + (show)
@suzyis7

No symptoms.....incidental finding from complaints of right side pain. Yes, my PET scan is today and I am concerned that it will reveal other tumors in other places.
This forum/group is wonderful! It helps so much to hear others explain what they are experiencing with neuroendocrine tumors.
Thank you for mentoring!

Jump to this post

@suzyis7

Your experience of an "incidental finding" is so common among us NET patients. My diagnosis was the same. No symptoms, but a routine EGD for GERD/hiatal hernia revealed the first NET in the duodenal bulb. Since the first surgery, I've had two more surgeries. My surgeries were in 2003, 2005 and 2016.

I look forward to hearing from you again. I hope you will update me with any findings from your PET scan today. Will you let me know of any questions you have as you walk this NETs journey?

REPLY
1 reply
suzyis7 | @suzyis7 | Nov 18, 2022
In reply to @hopeful33250 "Hello @suzyis7 and welcome to the NETs discussion group at Mayo Connect. As I've had three..." + (show)
@hopeful33250

Hello @suzyis7 and welcome to the NETs discussion group at Mayo Connect. As I've had three surgeries for NETs in the upper digestive tract, I really understand the shock that you are feeling. I never had any symptoms, so the surprise at having a rare form of cancer was hard to imagine. Typically, NETs are slow growing as you indicated.

I would encourage you to learn as much as you can about NETs. The Carcinoid Cancer Foundation (CCF) has some great patient information as well as videos from experts in the field. Here is their website, https://www.carcinoid.org/for-patients/. The more you understand about any disorder, the better prepared you will feel to deal with it.

Were you having symptoms that led to this diagnosis? Is your PET scan coming up soon?

Jump to this post

No symptoms.....incidental finding from complaints of right side pain. Yes, my PET scan is today and I am concerned that it will reveal other tumors in other places.
This forum/group is wonderful! It helps so much to hear others explain what they are experiencing with neuroendocrine tumors.
Thank you for mentoring!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 18, 2022
In reply to @suzyis7 "Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon..." + (show)
@suzyis7

Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon with possible surgery within weeks. Shocked! Describes how I feel. The tumor is on the tail of the pancreas and is 1.7 cm and slow growing. Wait and see was an option, but I am scared of it spreading.
Hope surgery is the right choice.

Jump to this post

Hello @suzyis7 and welcome to the NETs discussion group at Mayo Connect. As I've had three surgeries for NETs in the upper digestive tract, I really understand the shock that you are feeling. I never had any symptoms, so the surprise at having a rare form of cancer was hard to imagine. Typically, NETs are slow growing as you indicated.

I would encourage you to learn as much as you can about NETs. The Carcinoid Cancer Foundation (CCF) has some great patient information as well as videos from experts in the field. Here is their website, https://www.carcinoid.org/for-patients/. The more you understand about any disorder, the better prepared you will feel to deal with it.

Were you having symptoms that led to this diagnosis? Is your PET scan coming up soon?

REPLY
1 reply
lidiana | @lidiana | Nov 17, 2022

Hello 👋🏻 @hopeful33250 CA 19.9 progressively getting higher and symptoms and imaging findings are more… what should I’ll be looking forward to? I’m really sick…

Any feedback would be greatly appreciated 🙏🏻 blessings of healing for everyone 🌼❤️‍🩹🤲🏻
REPLY
1 reply
suzyis7 | @suzyis7 | Nov 15, 2022
In reply to @smt "I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after..." + (show)
@smt

I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.

Jump to this post


Thank you for responding . You give me hope as I navigate this journey. Hope you continue to do well.

REPLY
lidiana | @lidiana | Nov 15, 2022

Thanks for welcoming 👋🏻🌼

REPLY
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