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.

cordelia73 | @cordelia73 | 16 hours ago
In reply to @hopeful33250 "Hello @cordelia73 and welcome to Mayo Connect. No, I have not had any metastasis, just the..." + (show)
@hopeful33250

Hello @cordelia73 and welcome to Mayo Connect.

No, I have not had any metastasis, just the carcinoids in the duodenum. Surgeries have been my only treatment.

How was your husband's NET diagnosed? Was he having symptoms that led to the diagnosis?

Jump to this post

Thanks for answering. He had accuse pain and we thought it was appendicitis, in the ER, after a CT they saw a mass and then it all started. The biopsy confirmed well diferientiated , grade 1 neuroendocrine neoplasm in four tumors in different parts. Waiting for the Pet Scan to know more.

REPLY
cordelia73 | @cordelia73 | 3 days ago
In reply to @hopeful33250 "Hello @cordelia73 and welcome to Mayo Connect. No, I have not had any metastasis, just the..." + (show)
@hopeful33250

Hello @cordelia73 and welcome to Mayo Connect.

No, I have not had any metastasis, just the carcinoids in the duodenum. Surgeries have been my only treatment.

How was your husband's NET diagnosed? Was he having symptoms that led to the diagnosis?

Jump to this post

Thanks for answering. My husband was diagnosed because he had an acute pain which took us to the ER thinking it was apendicitis, they did a CT and it all started. Then they did a small surgery to get Biopsys and he has one on the duodenum, two more in the peritoneal area and some in the Liver. They still haven't found the primary one, we are waiting on the appointments to start treatment

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago
In reply to @cordelia73 "When you were first diagnosed, Did you have metastatis tumors in other parts? My husband has..." + (show)
@cordelia73

When you were first diagnosed, Did you have metastatis tumors in other parts? My husband has just been diagnosed and we are waiting to be treated.

Jump to this post

Hello @cordelia73 and welcome to Mayo Connect.

No, I have not had any metastasis, just the carcinoids in the duodenum. Surgeries have been my only treatment.

How was your husband's NET diagnosed? Was he having symptoms that led to the diagnosis?

REPLY
2 replies
cordelia73 | @cordelia73 | 5 days ago
In reply to @hopeful33250 "Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others..." + (show)
@hopeful33250

Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.

With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?

Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.

I look forward to hearing from you!

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When you were first diagnosed, Did you have metastatis tumors in other parts? My husband has just been diagnosed and we are waiting to be treated.

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1 reply
katinka58 | @katinka58 | Apr 2 8:20pm
In reply to @hopeful33250 "I'm glad that an appointment was made. If you have any questions or concerns in the..." + (show)
@hopeful33250

I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

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Yes thank you

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31 3:53pm
In reply to @katinka58 "He has had a nodule since 2019, so we don’t know if it was part of..." + (show)
@katinka58

He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

Jump to this post

I'm glad that an appointment was made. If you have any questions or concerns in the meantime, please post them.
Will you post again and let me know how he is doing?

REPLY
1 reply
katinka58 | @katinka58 | Mar 31 9:33am
In reply to @hopeful33250 "Hello @katinka58, I'm sorry to hear the recent MRI showed more problems with your husband's lung...." + (show)
@hopeful33250

Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

Jump to this post

He has had a nodule since 2019, so we don’t know if it was part of NET & just didn’t show anything, we have an appt. With oncologist in a couple weeks so it will be interesting on his take

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 29 4:01pm
In reply to @katinka58 "My husband has been fighting this since 2021, he had a tumor removed from his spine..." + (show)
@katinka58

My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

Jump to this post

Hello @katinka58,

I'm sorry to hear the recent MRI showed more problems with your husband's lung. Has he been experiencing any coughing or shortness of breath? Has his medical team indicated what treatment might be considered for the lung problem?

We do have several members on Connect who have discussed NETs in the lung. Is the collapsed lung considered to be a result of the NETs in the liver or bone or perhaps a new site for the NET?

REPLY
1 reply
katinka58 | @katinka58 | Mar 29 2:36pm

My husband has been fighting this since 2021, he had a tumor removed from his spine & then it metastized to his liver & bones (now bone cancer) he had another MRI of the abdomen last week & that shows his left lower lobe of his lung has now collapsed with gray shadowing ( he has never been a smoker) next week he will have another MRI of his spine, praying for good results.

REPLY
1 reply
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