Anyone have NETs that have metastasized into some bone and skull?

Yes I think you should look for a new NET dedicated specialist. I have a NET in my sacrum, so far no surgery, just a biopsy (after the PET DOTATATE SCAN) of my liver, which it has metastisized to (heavy tumor load) and I have a mesenteric mass. I am grade 2, 5% but stage 4 because it has spread from my primary ilium tumor. I have hashimotos thyroiditis and I think (this was April of this year) there was some light up in the pet of thyroid jeez I have to look into that. Yes, I'm concerned for you, I myself go to an overdue (by only 4 months) mammo this Tuesday and I'm nervous about that. Keep us posted please. This is the loneliest disease ever!

My husband, Ron, has many tumors in his skull. I have shared his story in many comments particularily the post on side effects of PRRT if you would like to look that up. The first tumor was found in 1995 - rediagnosed 12/30/22. At that time, we began working with the NETS specialists at Rochester Mayo Clinic. He started on Lanriotide in early January 2023. Everything remained stable until May 2026 and PRRT was suggested. He has a brain MRI once a year. His body is full of NETS. At the end of September he will have his 3rd PRRT treatment. Our suggestion would be to be sure you are seeing a NETS specialist. Mayo Connect is a wonderful source of information and support for this extremely rare cancer. In 1995, we were just sent home and told "good luck" as there was no treatment available. He lived a wonderful normal life and continues to do as much as he can. Unfortunately, at 82 he has developed AFIB which has changed his quality of life more than the NETS have. God Bless!

Your situation sounds a lot like mine and I can only tell you what I am doing. I had mine discovered in 2003 and had a foot of my intestines removed and the ileocecal valve removed with it. i haven't been able to gain weight since. I had blood work done last month and I am good there and an MRI. My NETs have metastasized through the years and they are in my skull, vertebrae, rib cage etc...and one in my heart , a few in my liver some in my mesentery. And the one in my heart has been dormant for years. But I feel good and have been able to live my life as I want, outside of watching my diet religiously to avoid diarrhea, I have only been getting Octreotide for the last 13 years. I have avoided any other treatment or medication even though PRRT has been suggested to me three and a half years ago..the thing is the tumors are spreading slowly and always have. I have never had one of them be aggressive. From what you say, yours are slow growing too. I am now 80 years old and I realize no matter what I do I will die sometime of something and odds are I won't make 90 for sure and I am not sure that is such a hot deal anyway. I don't want to spend the next few years chasing medically a few more years or months and it might not make any difference anyway. Last year I had a UTI because of prostate issues unrelated at all to the carcinoid issue , got sepsis and it almost killed me. So how much effect did having these carcinoid tumors have on my situation then--none. I am going to roll with things, continue the treatment I am on, get blood work 3 or 4 times a year as scheduled and an MRI and CAT scan as scheduled once a year. And this is philosophical. Will the carcinoids get me eventually? Maybe. Will something else get me? Maybe. but regardless of what I do medically, I only have a few years left anyway and I am not going to be young again because of any medical treatment. I am going to live my life, the remaining years and not be chasing medical numbers or images. One can easily get on that merry-go-round. I am not advising any one to take my approach but I am comfortable with it. I don't know your age so that can make a difference in how one sees things like if you are in your sixties. I have only dealt with a regular oncologist and never with a NET specialist.

@elainekb4, I hope you've had a chance to review the report with a specialist. Has it been confirmed that your NETs has metastacized to your vertebrae and skull? What is the treatment plan for you?