What did I learn at NANETs 2025?

Note: NANETs is the North American Neuroendocrine Tumor Society for oncologists and surgeons that specialize in NETs.

About 6 months ago, I got the NANETs newsletter that was asking for abstracts to present at their annual symposium this weekend (10/23-10/25) in Austin, Tx. At the time, I had 5 minutes to spare and decided to send a speaking idea about how patients with NETs are using AI in their care.

Now, NANETs is NOT for patients. It's for medical oncologists, surgeons, researchers all who specialize in NETs. But, my submission was accepted and I got invited to sit on a panel. That ultimately turned into me speaking to the entire conference and being on a panel.

So, guess what I did? If you guessed "presented to a room full of doctors who specialize in NETs, you guessed correctly! If you are interested in my presentation, you can see my slides here.

I met some amazing people and learned a lot. Here are some of the things I learned.

• First of all, this is NOT a conference for patients, and that's ok. It's important that the clinicians could speak to each other in their own language. It was slightly lonely since there weren't many other patients, but it was still valuable.

• There is a TON of activity going on in the NETs world around things like Immunotherapy (which activates the body's immune system to fight cancer), new forms of radiation therapies, new drugs, etc

• There is a lot of passion around treating NETs and the medical and patient community is very small but very accessible and all focused on helping people deal with the disease

• I think I heard that about 200,000 people in the US have NETs so it's not as uncommon as it can sound

• There are not many longitudinal studies around treatments. So, for example, PRRT (the radiation treatment that I am getting) is studied in terms of short term impact, but there are no studies that show the impact on someone's health who had PRRT 20 years post treatment (this is true for everything, even the injections that I get every 28 days (but might stop after radiation))

• Lutathera, the radiation drug I am on, is the major topic of discussion in treatment and research for NETs. It's everywhere. The research posters were mostly about some form of radiation. Quick note, the Novartis people on site didn't even know how much revenue is generated to Novartis by Lutathera. I found it and shared with them. In 2024, it was $724 Million and on track to be over $1 Billion soon. Currently, it contributes about 1.1% of Novartis' revenue

• The tacos in Austin are amazing. Big fan of Torchy's and VeraCruz All Natural

One of the major lessons I walked away with is that, although there is lots of work going on and progress being made, but we still don't know a lot and, in my opinion, we aren't approaching the work in the best way possible. (don't forget, I am not a researcher so I don't know everything they go through, but I can ask a different type of question since I don't have any system bias in terms of what should or shouldn't be studied).

For example, I had a great conversation with a researcher from University of Alabama Birmingham who is studying NETs in underserved communities. She showed me how she plotted her patients and I asked if she overlayed diet. The response? "Good idea". Personally I am not sure how you study patient populations without diet and environmental (and other factors) but there you have it.

Overall, great trip. I don't need to go every year (unless I am speaking) but I am glad I went and I learned a ton.

Some random slides that I took photos of at the conference.

Thanks for reading!