Living with Neuroendocrine NETS, any advice?
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.
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?
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.
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?
Hi
You might want to check out this zoom event.
https://www.ncf.net/events/apr2025?blm_aid=262552577
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
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?
Yes thank you