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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 18, 2023
In reply to @pennypowell "Hi, Even with the meds she says she isn't able to do the scan. She has..." + (show)
@pennypowell

Hi,
Even with the meds she says she isn't able to do the scan. She has has so many over the years that her anxiety is horrible.

We have talked about a few questions but I need to write them down. She has been though so much that she is thinking that she doesn't want to do anything. The decision is hers. It feels like we have been on a roller coaster with her health for the past seven years. We have been together for eight years. Three years ago she had major surgery to remove abcesses and mesh from her belly. She had fistulas also. When she came home from the hospital she had a wound the size of a volleyball that I had to pack. It did heal but over the past year she was having recurrent bowel blockages which is what lead to the last surgery. We are both tired. She is retired and I am still working and doing my best to care for her.

Thanks,
Penny

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@pennypowell

I certainly admire your loyalty in caring for your wife. Is she currently being seen by a NET specialist? If not, this might be helpful. Also, a counselor might be able to help with her depression and inability to go forward with treatment.

As you said, "decision is hers" and while she has been through a lot of medical problems, seeing a counselor and/or therapist might be helpful to her and also to you.

Would seeing a therapist be an option for either of you?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 18, 2023
In reply to @husbandneuro5 "My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble..." + (show)
@husbandneuro5

My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble with his sugar tanking. doc has him on 40mg steroids to control it. he also has stomach pain and he is on 15mg morhine 2x a day. He has trouble sleeping and can't stand how his face is swollen. treatment so far has been lanreotide injection, and he has had Y90 2x on liver tumors. When we first spoke to his oncologist she said this wasn't deadly. Now when we ask her any questions she just keeps saying well you have stage 4 cancer being vague when we ask if this is deadly. it has been just a little over a year since diagnosed. his endocrinologist sucks she hasn't said if there is a diet for him to control his sugar instead of having him take such high dose steroids. Is there ? thanks for listening just frustrated

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Hello @husbandneuro5 and welcome to Mayo Connect. I am sorry to hear of the problems your husband is having with the pancreatic NETs and also as you said in your post, "vague" responses of his current oncologist.

As you know, NETs are a rare form of cancer and are best treated by an oncologist who is a NET specialist. Have you sought a consultation with a NET specialist? Mayo Clinic has NET specialists at their three campuses (Arizona, Florida and Minnesota). Here is a link for information on obtaining an appointment for a consultation (either in person or virtual).
--Appointments at Mayo Clinic
http://mayocl.in/1mtmR63

You might also consider looking at the Carcinoid Cancer Foundation (CCF) website for a specialist. Here the website for that organization,
--CCF
https://www.carcinoid.org/for-patients/

Have you considered a second opinion from a NET specialist?

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Mentor
Miriam, Volunteer Mentor | @mir123 | Jan 18, 2023

I have a rare neuroedocrine tumor in my breast. It is treated as "ordinary breast cancer" but I am wondering if anyone has another experience?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 19, 2023
In reply to @mir123 "I have a rare neuroedocrine tumor in my breast. It is treated as "ordinary breast cancer"..." + (show)
@mir123

I have a rare neuroedocrine tumor in my breast. It is treated as "ordinary breast cancer" but I am wondering if anyone has another experience?

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Hello @mir123 and welcome to Mayo Connect. You are correct that a NET in the breast is very rare. We do have a Connect member, @trixie1313 , who does have this diagnosis. You can find her discussion about this at
--NET of Breast
https://connect.mayoclinic.org/discussion/ned-of-breast/

As with all rare cancers, it might be wise to seek an opinion from an oncologist who is a NET specialist. Mayo Clinic has NETs specialists at each of their three facilities (Arizona, Minnesota and Florida). Here's the link if interested http://mayocl.in/1mtmR63. You can also find NET specialists at the Carcinoid Cancer Foundation website.

How long ago was this NET discovered? What type of treatments have been suggested?

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1 reply
pennypowell | @pennypowell | Jan 19, 2023
In reply to @hopeful33250 "@pennypowell I certainly admire your loyalty in caring for your wife. Is she currently being seen..." + (show)
@hopeful33250

@pennypowell

I certainly admire your loyalty in caring for your wife. Is she currently being seen by a NET specialist? If not, this might be helpful. Also, a counselor might be able to help with her depression and inability to go forward with treatment.

As you said, "decision is hers" and while she has been through a lot of medical problems, seeing a counselor and/or therapist might be helpful to her and also to you.

Would seeing a therapist be an option for either of you?

Jump to this post

Hi,
It is for me but not for her. She refuses to see anyone. We haven't found a NET specialist yet. We will see a medical oncologist tomorrow.
Thanks,
Penny

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 19, 2023
In reply to @pennypowell "Hi, It is for me but not for her. She refuses to see anyone. We haven't..." + (show)
@pennypowell

Hi,
It is for me but not for her. She refuses to see anyone. We haven't found a NET specialist yet. We will see a medical oncologist tomorrow.
Thanks,
Penny

Jump to this post

Hello @pennypowell

I wish you all the best and I would like to support you during this time. Will you post an update after you see the medical oncologist?

REPLY
1 reply
pennypowell | @pennypowell | Jan 19, 2023

Hi,
Yes, thanks so much. She keeps wanting to cancel the appointment. Hopefully she goes. I will let you know either way.
Thanks,
Penny

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maria1966 | @maria1966 | Jan 19, 2023

Hi. I'm very happy to be part of this group. On December 2020 I had a Distal Pancreatic Splenectomy due to a NET state 1 on the tail of the pancreas. The journey has been rough in many days but for the most I have been great . I never had chemo and went back to work 2 weeks later. I have had a healthy life style for over 30 years and have been a healthy eater for the most part of my life. I will be 57 in 2 weeks and above all it has been GOD that has me here today. I still have my appointments and routine checks but everything looks good. Keeping a positive attitude, eating healthy and have an induvial relationship with God makes a huge difference when we have to walk through fire or storm.

Happy to be here!!

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judylong | @judylong | Jan 19, 2023

I just got the pathology results --Neuroendocrine tumer- NET/G1/Typical Carcinoid. I had a 9 mm left upper lobe pulmonary nodule discovered through previous test six months ago. Petscan showed no abnormal activity. I will be seeing my oncologist on Tuesday--- I have researched many options for treatment -- I am seriously considering finding a doctor who is more specialized since all information seems to indicate that this is a rare cancer. Any opinions?

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1 reply
pavlina60 | @pavlina60 | Jan 19, 2023

Hi! Pavlina here, 62 yo. Accidental CT scan of my chest discovered a mass in my abdomen in December. 16 cm mass on the tail of my pancreas. Multiple tests later I am going to a surgery on Feb.1. I will have a Ga dototate PET scan on Jan.26 hoping not to see spreading. Preparing for the worst, hoping for the best and leaning in God's hands.🙏

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