What do I need to know about NETS?

I was diagnosed with NET’s December, 2022. Started the same, small intestines and spread to the liver. I didn’t qualify for the clinical study due to previous prostate cancer diagnosis. I am currently on Lanreotide injections every 28 days to hopefully stop the spread, my third injection is tomorrow with a follow up MRI in June..

My husband was diagnosed March 16, 2023. He is receiving blood test and Sandostatin monthly. Is this a long term cancer as long as the injections keep working. What is the next step. Does this cancer have Stage 1, II, III?
Have you had any side effects with this cancer?

Thank you for your reply.

Sorry to hear that Delores. I was diagnosed with stage four pancreatic cancer that spread to my liver. I have neuroendocrine tumors. I was diagnosed on 8/22/2022. I finish up my 7th CAPTEM chemo cycle tomorrow. My lastest CT scan showed the three large tumors on my pancreas have all shrunk to less than half of the size of when we started. The over 200 lesions on my liver have stabilized or shrunk in size. It is slowly working. NETS can't be cured, so I will be on some sort of chemo for the rest of my life. What kind of tumors are you folks dealing with?

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much information, videos from NETS specialists, etc. Lots of NETS patients use that site. It's a support organization for NETS. Based in Los Angeles, but everything is online now. Click on Connect to read patient stories under both mentors and patient stories. Valuable site. Great way to get educated and connect with more NETS patients.

I have lung NETS - typical carcinoid and DIPNECH (causes most of the symptoms). I've been on octreotide injections every four weeks for 2 years now. Has improved my respiratory symptoms so much! Have 50+ tumors in both lungs that we have known about since 2008, but not diagnosed until 2020. Very slow growing, but have caused chronic coughing and shortness of breath for 30 years. I also had microwave tumor ablation on the largest tumor 2.5 cm. We will do ablation on any other tumors that reach 2 cm because those are the ones most likely to metastasize. Even though I've had it for they say probably decades, I'm still stage I lung NETS since it hasn't spread outside the lungs. Advanced DIPNECH which is really rare and causes the excessive amount of tumors. Even though I've had it longer, my lung NETS is much less of a threat than my stage IV breast cancer.

Best of luck to you and your husband. Best to be treated by a NETS team of specialists to be sure they are familiar with treatments specific to NETS. I go to UCLA an hour away for my NETS oncology team even though I'm treated by an oncologist across the street for my breast cancer. They coordinate. UCLA also has the DOTATATE PET Scan using Ga68 and Cu64.

Hello @deloris and welcome to the NETs discussion on Mayo Clinic Connect. I see that you and your husband are new to this diagnosis, and you are asking good questions. You mentioned that your husband's NET was found in the small intestine. Was surgery done to remove this NET? If so, the biopsy might help stage the cancer.

I would suggest, as others have, that you have a consult with a NET specialist. As this is a rare form of cancer, a NET specialist has the best understanding of treatment plans that are available. If you live near any of the three Mayo facilities, you might consider a consult there (either in-person or virtual). Here is information on obtaining an appointment at Mayo, http://mayocl.in/1mtmR63.

Each person's journey with NETs is different. I had my first surgery for NETs in 2003 and my third surgery was in 2016. I have follow-up endoscopies as well as MRIs. Surgery has been the only treatment.

I look forward to hearing from you again. You mention that your husband is having monthly Sandostatin injections. How is he feeling with these injections? What symptoms was he having that led to the diagnosis of NETs?

Me too. Im 55yr old man and had my 3rd injection 2 days ago for the same diagnosis. I get bloated and stomach pains about 10% of the time since i started Somatuline aka Lanreotide. Do you get this? I'm not sure if its a side effect of the treatment or from the NET in my SI. 🙏

I just found a really great general video overview (13 min.) of NETS from a few NETS specialists. It's on youtube posted by the Carcinoid Cancer Org. and called "ABCs of neuroendocrine cancer" in case the link below doesn't work. I hope this is helpful.

Very informative video! Thank you for sharing!

Thank you. Great information and hopeful support.

Hello @rmmartin and @marylou1944 and welcome to the NETs discussion group on Mayo Clinic Connect! It is good to have you join Mayo Connect.

I am glad that you found the video presentation helpful in understanding this rare form of cancer. Have either of you, or a family member, recently been diagnosed with NETs?