my doctors said it was too dangerous to use radiation with mine being

Posted by panorman3 @panorman3, Jan 11 4:37pm

my doctors said it was too dangerous to use radiation with mine being in the mesentery middle of my intestines. now will start with Lanotent cannot spell shots.

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

dbamos1945 | @dbamos1945 | Jan 11 5:54pm

@panorman3: Lanreotide 28 day shots help control digestion issues, can have side effect like gas, cramps, upset stomach; however, it does its job and can keep tumors from growing.
I’m a 4+ yr survivor of Sm bowel NET primary with metastases in liver. I have not had radiation beam therapy either. For instance help can provide tumor control in many forms - I had PRRT Lutathera radioactive targeted therapy a year ago and the results were stable (not growing) tumors, most tumors shrunk drastically in size over a 6 month period of treatment. NET tumors had to be Samatostatin Receptive to accept this radioactive drug & destroy the cancer cell nucleus.
I wanted you aware that there are specific treatments available that can be evaluated by your NET Specialist Medical Oncologist and this is your best decision to have this Dr advise you on your cancer journey.
Mayo Clinic Connect provide this forum for NET patients and families to get “first hand” experiences and suggestions to help us along the way.
Be hopeful… Scientists are providing new drugs & treatments to help us.

espelandmt2 | @espelandmt2 | Jan 12 10:39pm

My primary NET tumor was surgically removed from the mesentery along with 15 lymph nodes (9 cancerous) and 14 inches of small bowel. I have approximately 50 small tumors in my liver that are inoperable and started PRRT (Lutethera) Dec. 5th. I have been taking Sandostatin LAR (Ocreotide) for 8 years. Lanreotide should slow tumor growth similar to Octreotide). Is surgery not an option?

dbamos1945 | @dbamos1945 | 6 days ago

@espelandmt2: 01/13/26. Every NET case responds differently to treatments. I think you made a good decision when you opted for Lutathera PRRT and hope that your liver tumors are “destroyed” during your treatment (my tumors are still reducing in size and my 4 infusion treatment's ended in Dec 2024!) I am feeling like my’ol self again and am so grateful I choose the Lutathera NET treatment over surgery. I consider myself lucky that NET patients are given new options that give hope of tumor control. And we ‘re still encouraging a “NET Cancer Cure in our futures. Best to you…