I am 75 and have carcinoid tumors NET in lungs

Posted by ggiinnaa @ggiinnaa, Apr 18, 2025

One doctor suggested that I have DIPNECH I do have small carcinoids throughout my lungs. They were discovered when an Adenocarcinoma and my top right lung lobe was removed. I would love to hear from anyone with DIPNECH or carcinoid lung NET

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

Profile picture for nannybb @nannybb

@californiazebra I love learning about your life. You are so inspirational. Super great attitude. It sounds like you are in sort of a desert area. I wouldn't want to worry about other animal predators either. My only worry here is human crazy people when I go for walks. So I've been sticking to malls.
My father had to retire earlier than he wanted to, and he surprised us all with his sudden affection for squirrels. He could identify each and worried over them when they didn't show for a feeding. He was raised in the South, so dogs and small animals were not deemed as pets. It was so heartwarming to see him relating to the squirrels as something other than a food source...lol

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@nannybb
To know a squirrel is to love one. So cute and sweet! I used to name mine but stopped because I worried just like your father. I live a few miles from the coast but we have canyons and creeks supporting wildlife, tons of mature trees including 100 foot pine trees to support a variety of birds and squirrels surrounding my condo. Bunnies enjoy feeding on the grass. Lots of evergreen trees and plants with mild weather. Something for everyone. ❤️

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Profile picture for Zebra @californiazebra

@nannybb
To know a squirrel is to love one. So cute and sweet! I used to name mine but stopped because I worried just like your father. I live a few miles from the coast but we have canyons and creeks supporting wildlife, tons of mature trees including 100 foot pine trees to support a variety of birds and squirrels surrounding my condo. Bunnies enjoy feeding on the grass. Lots of evergreen trees and plants with mild weather. Something for everyone. ❤️

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@californiazebra You are so right. I found it cute he even recognized them individually. Roses were his other hobby. I was thankful. He got very depressed when he was forced to quit work.
Beach? I would love that element for sure. All of my nanny jobs in Fl. we're near the beach. It made it so easy to find a reason to get outside. The trees were not at all what I was used to, but even the scraggly pine trees there, were home to some magnificent creatures. I remember going on a late afternoon walk with twins I had under my care from the age of about two. They were about 3 or so at this point. We could hear an owl, but we could not see it. We stopped and I kept searching the tree tops. I finally found it, and had to guide them verbally to the right tree, and then get them to trace up the trunk visually. Just when they saw it sitting, it took off right over our heads with a wing spread that was quite impressive. I've since read that is somewhat unusual. It was amazing for the children. They got so excited. Being out in nature is the best. Thanks for sharing. Loved it !

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Profile picture for nannybb @nannybb

@californiazebra You are so right. I found it cute he even recognized them individually. Roses were his other hobby. I was thankful. He got very depressed when he was forced to quit work.
Beach? I would love that element for sure. All of my nanny jobs in Fl. we're near the beach. It made it so easy to find a reason to get outside. The trees were not at all what I was used to, but even the scraggly pine trees there, were home to some magnificent creatures. I remember going on a late afternoon walk with twins I had under my care from the age of about two. They were about 3 or so at this point. We could hear an owl, but we could not see it. We stopped and I kept searching the tree tops. I finally found it, and had to guide them verbally to the right tree, and then get them to trace up the trunk visually. Just when they saw it sitting, it took off right over our heads with a wing spread that was quite impressive. I've since read that is somewhat unusual. It was amazing for the children. They got so excited. Being out in nature is the best. Thanks for sharing. Loved it !

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@nannybb
Nature walks are good for the soul!

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Profile picture for Zebra @californiazebra

@nannybb
Nature walks are good for the soul!

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@californiazebra Exactly! Which, in turn affects the body into positivity. ( I am listening to a phych e-book) 🤣 "Every effect must have a cause". My brain is swelling. 😵‍💫

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Can the CgA be over 94 and not be a problem. I am at 97 and it is considered high, but CT showed no new NETs in my lungs or liver. Not sure what to do from here. Oncologist said to just wait and see.

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Profile picture for rogo @rogo

@nannybb I was diagnosed 9 years ago and thought the worst. I am now 73 . I am at Princess Margaret Hospital in Canada and assured they are one of the best with this. The doctors have assured me this type of cancer is very slow growing, rarely spreads and I will probably die from old age . I used to go for cat scans every 3 months , then every 6 months , now once a year , and a lung x ray between. I still have an occasional cough , and get out of breath walking up stairs but I can live with that . I hope they are right and I can continue on . Treatment is only necessary if the symptoms get worse , so I hope things stay the same. They tell me this is a very rare form of cancer , but one you can live with. They tell me it’s more of a condition that I have to live with. After my ct scans the word STABLE is my best friend.

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@rogo
Are your CT scans with contrast and are they only of the chest?

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Profile picture for haelsky @haelsky

@rogo
Are your CT scans with contrast and are they only of the chest?

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@haelsk. Once a year I have a ct scan chest no dye, and once a year just a chest xray , alternates every 6 months .

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Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan, pet scan and biopsy i was told have neurodocrine tumors dipnech after having bronchoscopy I was told one of my tumors is malignant . Because it is in the center of my lung surgery is really not an option. My doctor is putting me on injections and was told I will need to do them every 4 weeks for the long term. I’m worried about the malignancy tumor but he told me that the injection should shrink tumor and kinda make cancer like in active. There all in both lungs and no where else but I do have a lot. Have you ever had injections for your carcinoid tumor??

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Profile picture for myboys02 @myboys02

Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan, pet scan and biopsy i was told have neurodocrine tumors dipnech after having bronchoscopy I was told one of my tumors is malignant . Because it is in the center of my lung surgery is really not an option. My doctor is putting me on injections and was told I will need to do them every 4 weeks for the long term. I’m worried about the malignancy tumor but he told me that the injection should shrink tumor and kinda make cancer like in active. There all in both lungs and no where else but I do have a lot. Have you ever had injections for your carcinoid tumor??

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@myboys02
My tumors were inoperable too. I had SBRT (radiation) on 2 of them 3 years ago at 68. Then sandostatin shots monthly. Nothing has grown. Good luck!

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Profile picture for myboys02 @myboys02

Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan, pet scan and biopsy i was told have neurodocrine tumors dipnech after having bronchoscopy I was told one of my tumors is malignant . Because it is in the center of my lung surgery is really not an option. My doctor is putting me on injections and was told I will need to do them every 4 weeks for the long term. I’m worried about the malignancy tumor but he told me that the injection should shrink tumor and kinda make cancer like in active. There all in both lungs and no where else but I do have a lot. Have you ever had injections for your carcinoid tumor??

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@myboys02 Hi and welcome to Mayo Connect. What medicine is in the injections that you will be getting?

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