1. < Neuroendocrine Tumors (NETs)

Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

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

Turkey | @tomrennie | 1 day ago
In reply to @cindypat1 "I will be going to Mayo in Rochester. I have read SO much about all different..." + (show)
@cindypat1

I will be going to Mayo in Rochester. I have read SO much about all different kinds of treatments and such. I guess that’s when you just have to trust your Dr. I just wish the main tumor in myluver wasn’t so large. Over 6 cm. That seems to make some treatments not an option.

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My liver had an 8x6cm lesion and my pancreas had an 8x6cm tumor which was my primary. I started chemo. Both eventually shrunk, started working again, and are stable on a lower dose of maintenance chemo. Yours hopefully will have similar, if not better, results. Stay positive. It really helps.

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vinnie694 | @vinnie694 | 1 day ago
In reply to @pavlina60 "How did the drs find the growths? MRI or CT? I was diagnosed 2 yrs ago..." + (show)
@pavlina60

How did the drs find the growths? MRI or CT?
I was diagnosed 2 yrs ago ( December 2022)via F18- DG PET scan; had Ga Dotatate before surgery ( debulking) and have been having CT scans with contrast every 4 mo.
Hugs, and keep the fight!
Pavlina

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Pavlina, the growth was detected through routine MRI’s , and then verified with a PET scan, which was used to compare with my original PET scan 2 years ago.

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cindypat1 | @cindypat1 | 3 days ago

I will be going to Mayo in Rochester. I have read SO much about all different kinds of treatments and such. I guess that’s when you just have to trust your Dr. I just wish the main tumor in myluver wasn’t so large. Over 6 cm. That seems to make some treatments not an option.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago
In reply to @cindypat1 "I will go to Mayo next month for more scans and see about where the primary..." + (show)
@cindypat1

I will go to Mayo next month for more scans and see about where the primary tumor is. Also what the treatment plan will be. The waiting is the worst.

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I agree, @cindypat1, waiting is the difficult part of this whole journey. I am glad to know that you will be seen at Mayo. There are NET specialists at Mayo who are excellent. Which Mayo facility will be at?

I look forward to hearing from you again. Will you keep posting and asking questions?

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cindypat1 | @cindypat1 | 3 days ago
In reply to @hopeful33250 "Hello @cindypat1 and welcome to the NETs support group on Mayo Connect. We have many members..." + (show)
@hopeful33250

Hello @cindypat1 and welcome to the NETs support group on Mayo Connect. We have many members on Connect with NETs in the liver. There are many treatments such as chemotherapy, embolization, injections, etc. I searched Connect discussions that speak of NETs in the liver. Here is a link to those discussions:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=liver#discussion-listview
I would encourage you to read these posts to understand the many treatment plans.

It sounds like this is a relatively new diagnosis for you. Is this correct? What is your oncologist suggesting as a treatment?

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I will go to Mayo next month for more scans and see about where the primary tumor is. Also what the treatment plan will be. The waiting is the worst.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago
In reply to @cindypat1 "My large tumor is in the liver. Anyone know of how that size located there is..." + (show)
@cindypat1

My large tumor is in the liver. Anyone know of how that size located there is handled? I know everyone is different. Thanks!

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Hello @cindypat1 and welcome to the NETs support group on Mayo Connect. We have many members on Connect with NETs in the liver. There are many treatments such as chemotherapy, embolization, injections, etc. I searched Connect discussions that speak of NETs in the liver. Here is a link to those discussions:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=liver#discussion-listview
I would encourage you to read these posts to understand the many treatment plans.

It sounds like this is a relatively new diagnosis for you. Is this correct? What is your oncologist suggesting as a treatment?

REPLY
1 reply
pavlina60 | @pavlina60 | 3 days ago
In reply to @vinnie694 "I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized..." + (show)
@vinnie694

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized to my liver, 16 tumors on my liver I believe the largest was around 2.8, I’ve been on Ocreotide injections every 28 days . So far it has stopped the spread, but a few have started to increase. Had my first Lutathera treatment last month to assist in stopping the growth.. So far in 2 years I still feel the same, no major issues with the treatments, only a little nausea and diarrhea for 2 days after.. I am currently going to Mayo for my treatments , everyone is different with their treatments, I wasn’t a candidate for surgery.. As far as life expectancy, don’t loose hope, there are people on this site that have been getting shots / treatments for many years.. I go to Mayo Jacksonville, and I totally trust my team..

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How did the drs find the growths? MRI or CT?
I was diagnosed 2 yrs ago ( December 2022)via F18- DG PET scan; had Ga Dotatate before surgery ( debulking) and have been having CT scans with contrast every 4 mo.
Hugs, and keep the fight!
Pavlina

REPLY
1 reply
greenmountainzebra | @greenmountainzebra | 3 days ago
In reply to @hopeful33250 "Hello @greenmountainzebra, Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first..." + (show)
@hopeful33250

Hello @greenmountainzebra,

Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first Thursday of each month via Zoom, from 5:30 to 7 p.m. EST. If you would like to be put on the email list for a meeting notification, please send a message to the social worker who facilitates the meeting: Loriell Grossling at Email: Grossling.loriell@mayo.edu

I hope you can attend the February meeting!

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Yes! Thank you. I will be there. I’ll email now to get in the list.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago
In reply to @greenmountainzebra "I’m trying to figure out when the NET support group meets? Is it the first Thursday..." + (show)
@greenmountainzebra

I’m trying to figure out when the NET support group meets? Is it the first Thursday of every month? Thank you.

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Hello @greenmountainzebra,

Yes, as mentioned by @vinnie694, the NETs virtual support group meets on the first Thursday of each month via Zoom, from 5:30 to 7 p.m. EST. If you would like to be put on the email list for a meeting notification, please send a message to the social worker who facilitates the meeting: Loriell Grossling at Email: Grossling.loriell@mayo.edu

I hope you can attend the February meeting!

REPLY
1 reply
vinnie694 | @vinnie694 | 3 days ago
In reply to @kevinmonroemi "I meant to say ki-67 % I am a 7 low grade 2" + (show)
@kevinmonroemi

I meant to say ki-67 % I am a 7 low grade 2

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My ki-67 is 6.6%

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