Metastatic NeuroEndocrine Grade 3 - ki 80% -

Hello @mamadneuroendocrine and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. You are asking good questions. The treatment for NETs is varied. Surgery is the usual option to remove the tumor and often follow up with monthly injections and in some cases PRRT (a type of chemotherapy used specifically for NETs). The treatment varies depending on the type of NETs as well as the experience of the oncologist. I see that @pavlina60 has already shared her experiences with you. I would also like to invite @kim1965 to this discussion as his wife has a similar diagnosis as you and he might be able to share their journey with treatment and @ahtaylor who has had NETs in the pancreas for several years.

Many of us, including myself, had no symptoms when we were diagnosed with NETs, but the NETs were found incidentally (during scans or check-ups for other health issues). Was this your experience as well or were you having symptoms?

One of the most important considerations with NETs is to have at least one consultation with a NET specialist. Not all general oncologists have been trained to treat this rare form of cancer. If you would like to get a consultation with a NET specialist at one of the three Mayo locations, here is a link to their appointment information, http://mayocl.in/1mtmR63. If for any reason you cannot consult with a Mayo Clinic NET specialist, here is a website where you can find NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Generally, after a consultation with a NET specialist, you can follow up with your local oncologist.

How are you feeling, @mamadneuroendocrine? What are your most troublesome symptoms right now?

@hopeful33250 hi, I'm wondering if there is any virtual/ remote consultation that can be arranged. My son has pNET with metastasis to lymph node. Surgery was carried out to remove his pancreas, gall bladder, spleen and duodenum, but not successful. Now he had 2 out of 4 treatments of PRRT. He will take a pet scan dotatate to see the effectiveness of the treatment. I'm worried that we may have waisted a lot of time and track along a wrong route.

Hello, mamandneuroendocrine! I was in a similar situation. My pNET was discovered accidentally during a stroke work-up in November 2022. Ki ~20% and during PET scan endometrial cancer was also found. So I had ' double surgery' - hysterectomy and dystal pancreatectomy, spleen and gall bladder removal. My tumor was 20×16 cm, so no other option than surgery and also have liver mets ( stage 4). It is called ' debulking surgery'- removing the bulk of the tumor load. Depending on your tumor size and metastasis you may be offered other options ( chemo). In my case I needed both surgeries and fast. 9 hrs and a week in the hospital and I am back to a ' new normal'. My NET is functional, so I get Lanreotide injections once every 4 wks. So far, no new growth as per CT scans. I had high blood sugar which is now close to normal, but I lack enzymes for digestion so I take Creon with every meal. Praying for you, stay strong! 💜🦓

Hi mama neuroendocrine, it sound like you’re on a similar path of hope in managing this NET. Our path, I’ll try to keep it short. Diagnosed in April 22, with mass on pancreas, and metastasized to liver- too many to count. Oncologist referred us to Froedert Cancer Care center in Milwaukee. She started immediately on Lanreotide injections and CAT/TEM Chemo (pill version). After 9 months on those, we achieved great results with about a 80% reduction in size and numbers of tumors. That put her as eligible for surgery in March 23, removing mass on pancreas, spleen removed, gall bladder, and debulked all the tumors they could get on liver. After that changed to Ocetrcide instead of Lanreotide, and our team wanted us to do PRRT treatments to knock the remaining NET in liver to its lowest level. They presented an option of a liver transplant for her since all scans are only showing still in liver. We are 2 of 4 into the PRRT treatments, and getting tested to see if she is a good candidate for a liver transplant. So the quick info, I can tell you, is you got this, get a great medical team on your side with a NET Specialist, and they will guide you to the best decisions in your case. Hope this helps, you got this!🙏

Hello @mamadneuroendocrine and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. You are asking good questions. The treatment for NETs is varied. Surgery is the usual option to remove the tumor and often follow up with monthly injections and in some cases PRRT (a type of chemotherapy used specifically for NETs). The treatment varies depending on the type of NETs as well as the experience of the oncologist. I see that @pavlina60 has already shared her experiences with you. I would also like to invite @kim1965 to this discussion as his wife has a similar diagnosis as you and he might be able to share their journey with treatment and @ahtaylor who has had NETs in the pancreas for several years.

Many of us, including myself, had no symptoms when we were diagnosed with NETs, but the NETs were found incidentally (during scans or check-ups for other health issues). Was this your experience as well or were you having symptoms?

One of the most important considerations with NETs is to have at least one consultation with a NET specialist. Not all general oncologists have been trained to treat this rare form of cancer. If you would like to get a consultation with a NET specialist at one of the three Mayo locations, here is a link to their appointment information, http://mayocl.in/1mtmR63. If for any reason you cannot consult with a Mayo Clinic NET specialist, here is a website where you can find NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Generally, after a consultation with a NET specialist, you can follow up with your local oncologist.

How are you feeling, @mamadneuroendocrine? What are your most troublesome symptoms right now?

Thank you Teresa. I submitted a form to be connected with a Mayo spevialist. Look forward to hearing back from your team.

Thank you Teresa. I submitted a form to be connected with a Mayo spevialist. Look forward to hearing back from your team.