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Spreading NET

Neuroendocrine Tumors (NETs) | Last Active: May 22 9:47am | Replies (26)

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@michaelv

I’ve gone through four embolization procedures on my liver and I’m down to my last one on Friday. The tumors grew very fast once they started giving me the octreotide injections. Surgery wasn’t an option and as they have already said they can really only do histotripsy on smaller ones (it’s more of a maintenance for tumors once you know you have them). My largest tumor was the size of a grapefruit and required 2 embolization procedures to start killing off. This procedure on Friday is to get rid of two smaller ones. Oncologist wants me to start chemo pills afterwards but that won’t be until after my next scan in May. In case you were wondering most of my main symptoms have severely lessened (nausea/diarhea/constipation/etc) after the fourth embolization and my continued octreotide injections. Because of the size of the tumors it really took a lot out of me after each one, and as I’m only 49 I rushed to get them done sooner. This last one I was in no rush to get them done and I let my body heal. I lost a good 40lbs and I’m starting to put it back on. Keep up your fight and make sure you are looking at all of your options.

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Replies to "I’ve gone through four embolization procedures on my liver and I’m down to my last one..."

Hello @michaelv and welcome to the NETs support group on Mayo Connect. You and your medical team have certainly been proactive in dealing with these tumors. Your experience should be helpful to others facing multiple NET tumors. I am also glad to hear that as a result of your embolizations, your symptoms have lessened. That must be very encouraging for you.

How long ago were your NETs diagnosed?