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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: 43 minutes ago | Replies (144)Comment receiving replies
Hello @annie12345,
I am glad that you found this forum. It will help you find support in your journey with lung NETs. Here is a link to many of the Connect discussion groups where lung NETs are mentioned:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung&pg=2. I would encourage you to read these posts to discover what other lung NET patients are saying about their diagnosis and treatment. I would especially like to invite @californiazebra to post with you, as she has had lung NETs for many years.
What is the most difficult symptom you are dealing with, @annie12345?
Replies to "Hello @annie12345, I am glad that you found this forum. It will help you find support..."
Thank you so much I have read these an its helped me alot to understand more,I really don't suffer with symptoms,bloating/ acid reflux but not sure if that's anything to do with this.Thanks again for replying
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@annie12345
After you read thru all the posts, let me know what questions you still have. My 50+ lung nodules were discovered in 2008 but based on respiratory symptoms I’ve had lung NETs and DIPNECH for at least 30 years. Mine are typical carcinoids. Very very slow growing. I’m doing very well and you will too. You stated a small percentage of people have NETs in their lungs. I’ve read about 25% of NETs patients have lung NETs. Based on all the stories I’ve read, I would rather have lung NETs than GI NETs. Hang in there. I think you’ll feel better after reading through all the posts. Oh, and after having it for decades it is still contained in my lungs and hasn’t spread outside the lungs. Amazing.