Living with Neuroendocrine NETS, any advice?

Yes thank you

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?

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

Hi

You might want to check out this zoom event.
https://www.ncf.net/events/apr2025?blm_aid=262552577

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?

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.

The bone lesions are mostly all gone and not a concern. I can't attribute any side affects specifically to the bone lesions. I was really sick at the time. Sorry. What are you experiencing?

Hello @lauriejane and welcome to the NETs support group on Mayo Connect. I see that @dbamos1945 has already responded to your post with helpful ideas. I would also encourage you to look through the list of discussions in the NETs support group. Here is a link to that list (it goes on for several pages), https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

Here are some discussion groups that speak of stomach NETs and gastroectomy:
https://connect.mayoclinic.org/discussion/partial-gastrectomy/
https://connect.mayoclinic.org/discussion/anyone-have-a-stomach-net/?pg=2#comment-897597
I understand you when you say, "The uncertainty of what is to come has been difficult for me." We have all felt that way and some of us still do.

I look forward to hearing from you again, @lauriejane. Please share a few more details about your NETs diagnosis. For example, when you say that you had a "total gastrectomy..." could you explain what that means, i.e., was the entire stomach removed? What type of symptoms were you having that led to the discovery of NETs?

Hello @mb6502 and welcome to the NETs support group on Mayo Connect. On Connect there is a discussion group regarding spine and bone METs. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/net-in-the-spine/
As you read the posts you may find some helpful information.

Also, a consultation with a NETs specialist might be a good idea. Mayo Clinic has NET specialists at all three locations. Here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63. If you can't be seen at a Mayo facility, here is a listing of NET specialists throughout the U.S., https://www.carcinoid.org/for-patients/treatment/find-a-doctor

Do you have a lot of bone pain related to these tumors?

@lauriejane: If I were you I would read and take notes from the many Neuroendocrine Tumor posts given on Mayo Connect. Then you can post the few questions or needed explanations not resolved from your research.
You will be able to deal with the many details of your disease by absorbing and internalizing this info. You are not alone! We are here to help, but you will benefit by being persistent in your search for acceptance. Best…