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.

rnelson63 | @rnelson63 | Jan 19, 2023
In reply to @pavlina60 "Hi! Pavlina here, 62 yo. Accidental CT scan of my chest discovered a mass in my..." + (show)
@pavlina60

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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Prayers for you

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rnelson63 | @rnelson63 | Jan 19, 2023

Hi,
59 yr diagnosed with Pheochromocytoma or paraganglioma. The doctors are trying to find somewhere that does an MIBG scan, so they can see where it is located.
Adrenal glands where clear on CT scan.
Not much information on metastasis I guess it’s a wait and see. I’m bit nervous.
After reading about others on here I feel fortunate at this time. Sending all my prayers and positive energy to all of you.

I was wondering if anyone has had this tumor and what was that like in the treatment of it.

Thank you

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Jan 20, 2023
In reply to @hopeful33250 "Hello @mir123 and welcome to Mayo Connect. You are correct that a NET in the breast..." + (show)
@hopeful33250

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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Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months ago. I did indeed consult with a neuroendocrine specialist (University of NM), and the pathology was also confirmed with Mayo. Every doctor I've consulted has specified: 6 months of chemo, lumpectomy, 30 radiation treatments, and long term aromatase-inhibitor. However, I have kidney disease, a missing lung, and numerous co-morbities. I decided against chemo and targeted therapies, and was told I had 1-2 years to live. So I settled into that, working on quality of life. Now the tumor is responding well to the AI and my surgeon is very optimistic about possible curative rather than palliative effects of forthcoming lumpectomy. Obviously a roller coaster! There is almost no info on survival rates--in the only study anyone could find the participants all died too quickly for any kind of outcome. I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2023
In reply to @mir123 "Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months..." + (show)
@mir123

Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months ago. I did indeed consult with a neuroendocrine specialist (University of NM), and the pathology was also confirmed with Mayo. Every doctor I've consulted has specified: 6 months of chemo, lumpectomy, 30 radiation treatments, and long term aromatase-inhibitor. However, I have kidney disease, a missing lung, and numerous co-morbities. I decided against chemo and targeted therapies, and was told I had 1-2 years to live. So I settled into that, working on quality of life. Now the tumor is responding well to the AI and my surgeon is very optimistic about possible curative rather than palliative effects of forthcoming lumpectomy. Obviously a roller coaster! There is almost no info on survival rates--in the only study anyone could find the participants all died too quickly for any kind of outcome. I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling.

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@mir123

I appreciate hearing from you again. How great that the tumor is responding to the treatment and that the lumpectomy might possibly be curative.

Yes, this has been a roller coaster ride for you. When you say, "I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling" I can understand that. You have had a lot of opinions and it is good to hear that you are accepting of where you are and how you will conduct yourself during the ups and downs of this process.

As you are having six months of chemo, how far into that six months are you now?

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cu2 | @cu2 | Jan 21, 2023
In reply to @pavlina60 "Hi! Pavlina here, 62 yo. Accidental CT scan of my chest discovered a mass in my..." + (show)
@pavlina60

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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Hello and those are the best hands to be in right now. Blessings to you as you go forward .

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vblaney38 | @vblaney38 | Jan 21, 2023

Carcinoid Specialists in The Villages
I live in The Villages. I am looking for a Carcinoid Specialist here. Can anyone recommend someone?
Thank you.

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1 reply
pennypowell | @pennypowell | Jan 21, 2023
In reply to @hopeful33250 "Hello @pennypowell I wish you all the best and I would like to support you during..." + (show)
@hopeful33250

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?

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He offered an injection that will help with symptoms. Because she isn’t able to do the scan he recommended she start hospice. She wants to talk to another oncologist in our town. She is really tired and in going to work on getting her affairs in order. She has an appointment with her internist and endocrinologist on Monday.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 21, 2023
In reply to @pennypowell "He offered an injection that will help with symptoms. Because she isn’t able to do the..." + (show)
@pennypowell

He offered an injection that will help with symptoms. Because she isn’t able to do the scan he recommended she start hospice. She wants to talk to another oncologist in our town. She is really tired and in going to work on getting her affairs in order. She has an appointment with her internist and endocrinologist on Monday.

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Hello @pennypowell

I'm glad to hear that she wants to see another oncologist.

You mentioned that the doctor wants to give her an injection. Did the doctor indicate that the injection was octreotide?

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pennypowell | @pennypowell | Jan 21, 2023
In reply to @hopeful33250 "Hello @pennypowell I'm glad to hear that she wants to see another oncologist. You mentioned that..." + (show)
@hopeful33250

Hello @pennypowell

I'm glad to hear that she wants to see another oncologist.

You mentioned that the doctor wants to give her an injection. Did the doctor indicate that the injection was octreotide?

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Hi,
It is lanreotide.
Thanks,
Penny

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Jan 21, 2023
In reply to @hopeful33250 "@mir123 I appreciate hearing from you again. How great that the tumor is responding to the..." + (show)
@hopeful33250

@mir123

I appreciate hearing from you again. How great that the tumor is responding to the treatment and that the lumpectomy might possibly be curative.

Yes, this has been a roller coaster ride for you. When you say, "I'm resigned to not "knowing" and proceeding in an authentic manner, but it has been baffling" I can understand that. You have had a lot of opinions and it is good to hear that you are accepting of where you are and how you will conduct yourself during the ups and downs of this process.

As you are having six months of chemo, how far into that six months are you now?

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Thank you for the support! No chemo--I've declined it due to kidney disease, numerous other co-morbidites, and personal preference. I'm going for a low-key approach with emphasis on quality of life and so far this is a good for me and my family. I realize this may be a bit eccentric, and I'm supportive of folks doing something different, too. And treatments I am getting appear helpful--so I guess it is kind of a middle of the road view.

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