1. < Neuroendocrine Tumors (NETs)

Just diagnosed: Metastatic NETs. Treatment?

Posted by helloitsme @helloitsme, Apr 28, 2023

Hello everyone. I am new to this site and this is my first post. I had a routine colonoscopy in March and found that I had one very small NET in the cecum. No metastatic disease was found by CT scan, but I insisted to have a PET even if I had to pay for it myself. The PET scan revealed that the tiny polyp had already metastasized to 2 lymph nodes, 1 small lesion in my liver and 2 tumors in my heart cavity. I was shocked to say the least, especially since the CT showed nothing. The oncologist said this does not respond to chemo, and it is inoperable, so he is suggesting Lanreotide to keep the cancer from growing. Has anyone had this diagnosis and treatment? It seems my oncologist does not want to discuss much with me. I have had to do my own research and ask him thousands of questions that he only answers with a yes or no. He won't even give me a prognosis, saying he's not sure if I really want to know or not. I'm really frustrated and don't even know if I should have treatment or not because I have zero symptoms and I'm so afraid of side effects from the Lanreotide. Are they bad? Does everyone have side effects? Can side effects be controlled with other medications? I'm at a total loss and feeling so scared. I just do not know what to do. I am in Austin, TX but I do have an appointment with Mayo Clinic in Phoenix in late May. I may go crazy before then! Any advice from any of you out there will be greatly appreciated...thanks for listening!

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

helloitsme | @helloitsme | May 13, 2023
In reply to @abby84 "I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver...." + (show)
@abby84

I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver. MRI showed several, like 25 to 30 small tumors. Doctor started me on sandostatin lar to help with severe diarrhea and flushing. That was it for the first year and a half, although I did go thru 3 embolizations to cut the blood supply to the larger tumors. In July of 2022 a few new ones showed up on CT Scan and I was put on Everolimus 10 mg which I waited to take in October, because of the side effects. Not bad until 2 months into the medication, they lowered the dosage to 5 mg and started taking it February of 2023. Again side effects kicked in 2 months, I haven't been able to eat a lot of foods because of the terrible after taste. This is suppose to be a slow growing cancer and a few keep getting larger so April I had what they call Y 90 procedure done and if I could go back in time I would have insisted on them doing the embolizations again. I got terribly sick from the protecting liver and stomach pills they wanted me to take for preventive purposes which I not told to me before the procedure. This is a procedure they now like to do instead of embolization. If I had known about the strong medicine after procedure and the possibility of liver failure (liver failure I was aware of) I definitely would have stuck with the embolizations. I see cancer doctor on the 17th and procedure doctor on the 24th and I am hoping for some answers, other than everyone is different and I can't get a prognosis either. First time I met with my cancer doctor she informed me that this is a slow growing cancer and that I have 20 years. Not sure what to believe anymore. I'm seriously looking to just taking the monthly sandostation lar injection for awhile and get another PETScan done ... I had my Last PET scan done June of 2021. I have had several cats and. A little worried that your CT scan didn't reveal what the PETScan did. Basically the last year has been extremely awful for me.

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Oh dear, it sounds like you have had a really rough go of it! I’m so sorry to hear this, and I hope you get some relief very soon. I don’t have any words of wisdom for you as I have just begun this journey myself, but just know you’re in my thoughts and prayers, and I’m sending positive energy your way. Take care and please do keep me informed of your progress.

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abby84 | @abby84 | May 13, 2023

Thank you, and keep me informed on your progress. Thoughts and prayers to you

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Turkey | @tomrennie | May 13, 2023
In reply to @helloitsme "Yes I will…this site is a Godsend for me. Y’all are so sweet, caring and informative..." + (show)
@helloitsme

Yes I will…this site is a Godsend for me. Y’all are so sweet, caring and informative here, and you make me feel very comfortable. Thank you for that!

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@helloitsme as your appointment nears, let us help you with some logistics. There is a fair amount of construction going on. It is easy to get through. We don't want you to get lost. You will have a lot of emotions going on.

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