Multidisciplinary team is a group of professional's from various disciplines who collaborate to provide comprehensive care for patients. These teams are designed to bring together the unique skills and expertise ultimately resulting in improved patient outcomes. What do you know about the tumor? What type is it? Is it functioning? secreting hormones? Can it be removed? What grade is it? What is the Ki-67 ? Do they know where the primary is? You should know these things. If they can’t tell you these things go somewhere else.

I was diagnosed last October. It was such a surprise. Fortunately, I have a team of experts who are experienced treating NET. My team is at Froedtert Hospital/Medical College of Wisconsin. I and a family member are both being treated here. Our teams includes a surgical oncologist, medical oncologist, intervention radiologist, and support staff, all with experience with NET. The NETs in my intestine were removed but I have follow up appointments to monitor for future tumors. Odds are, there will be more, and I am ready.
Second opinions can be very helpful, especially for something so important.
My thoughts are with you. It is hard to find the right medical care. I was lucky.
I wish you well.

Hi there, fist off.. fellow Wisconsinite.....GoPackGo. back to the NETS. My hubs was diagnosed back in 2019 with it originating in the small intestine and having metastastisized to the liver. I shared his story a few months ago, if you're interested. Finding an Oncologist who preferably specializes in NETS is best. They are Hematology Oncologists. His team is primarily his surgical Oncologist who oddly enough specializes in NETS as was as looping in with his Cardiologist and primary care Dr. We were very fortunate to have them both "drop in our lap" by a simple trip to the ER for what we thought was needed was a GI cocktail for a bleeding ulcer. Turned out he had a blockage and needed emergency surgery. The surgeon on call was his now surgical Oncologist who specializes in NETS. Go figure. We were so fortunate to have a dr who knew what it was before he even did the surgery. All while we were in shock and oblivious to everything around us.

As to some"tools for that toolbox".
1. Find an Oncologist who specializes in NETS. 2. Educate yourself. Read about Neoendrocrine carcinoid tumors. 3. Write down your questions to ask the Dr. And continue to research and ask questions going forward. 4. This is important: Of all the cancers you can get this is probably one if the best ones to have. Meaning, it's generally a slow growing cancer... even if at stage 4. (I say generally to CYA and bc each case is different). My hubs Dr told him...."you won't die FROM cancer but WITH cancer". So let that ease your mind a bit. The biggest thing is knowing how NETS grow and spread and the treatment options. And don't be afraid to ask why your not being treated say the recommended way. Maybe the Dr isn't well versed on NETS... maybe it's your overall health that he's chosen that treatment route. And definitely if you get "that feeling" of "this Dr just doesn't seem to... get it or ... whatever" get a second opinion. My hubs is on his 3rd Oncologist. The first just bc of location but the 2nd he just felt like the Dr just wasn't up on the latest treatment nor did he care to look at other options when my hubs asked about them. You've got a lot to take in but with knowledge at least you know what you're up against. Take a deep breathe... it'll be ok. Good luck and keep us posted on your progress.

Hi I was sick for a long time until we accidentally discovered it was and net stage 4 grade 1 net, I was placed on landreotide injections. But not Creon, long story short, you need Creon to turn on pancreatic enzymes when you eat since lanreotide blocks it. I found a new Dr who specializes in nets. He immediately placed me on Creon, Xermelo and scheduled me for PRRT. I’m waiting the results from the treatments and scheduled in April for Doatate pet scan with copper to light up the cancer to see what the treatment have done. Getting a team that Dr. that uses a multidisciplinary system means they look at you from many different perspectives and have the knowledge and advice of many professionals to help with our treatment plan. My advice is be your own advocate, find a doctor who specializes in nets, sees many patients not a few a year. Don’t settle. The information is available you have to search it out and having the right team is most important. I hope that makes sense. -Nevin

The NET you had removed in 2008 was that your primary NET? What was the grade and size ? Had it spread at the time ?

Thanks for sharing your journey . Can you tell me about the NET in 2008? Like where was it and the size , grade and stage of the NET. I was diagnosed Jan. 3 2025