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Newly diagnosed with NET in liver

Neuroendocrine Tumors (NETs) | Last Active: Dec 11, 2022 | Replies (24)
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@harley4650

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks like it spread to the liver 3 spots i had 3 sandostatin shots monthly had a cat scan 2wks ago showing tumors growing larger, doctors want to start prrt next month, still have lots of diarrha and crams and gas from the surgery.Undecided on prrt need more information

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Replies to "I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks..."
Teresa, Volunteer Mentor | @hopeful33250 | Sep 24, 2022

Hi @harley4650

Deciding on PRRT, or any type of chemotherapy, is a big decision. Getting more information is a great first step. I always say that an informed patient makes the best decisions. As @colleenyoung, mentioned in her post we do have discussion on Connect from others who have had or considered PRRT. I would encourage you to attend the NETs support group meeting on the first Thursday of the month at 5:30 p.m. EST. It is a virtual meeting, via Zoom. I mention it because there are many members of the support group who have had PRRT, and they would gladly share their experiences.

Have you or your doctors considered liver embolization? It is a way of lightening the tumor load in the liver. Here is some information about this procedure:

--Embolization Therapy for Liver Cancer
https://www.cancer.org/cancer/liver-cancer/treating/embolization-therapy.html

You might consider having a consultation with a NETs specialist. The Carcinoid Cancer Foundation (CCF) has a list of NET specialists. If you go to the CCF website, you can see if there is a specialist nearby for an in-person or virtual consultation.

Here is a Mayo Clinic video describing PRRT.

I hope that it helps you understand the process a bit more.

What have your doctors told you about PRRT?

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