"A Patient Perspective: Neuroendocrine Cancer Foundation 2025 Virtual Conference" - By Alexandra Frost

Alexandra Frost with her family.

Six months ago, I’d never heard of a NET. That all changed quite swiftly when an emergency gallbladder scan inadvertently revealed a 4.2 cm tumor in my appendix, which had spread to lymph nodes in the intestines. You never know what topics you’ll find yourself immersed in as life takes its unexpected twists and turns, but as a longtime journalist, I found myself deep-diving down a research hole into a world I knew nothing about. 

I wish I’d had the 2025 Neuroendocrine Cancer Foundation Virtual Conference six months ago, as I tried to get a grasp on this rare condition that upended my perception of life as a busy, working mom with five little kids. I wish I had the community-driven camaraderie that both patients and doctors have built inside this community and the world of NETs right from the beginning. Yet, I’m thankful to have it now, especially given the theme of how to make your “next best decision.”

The 2025 virtual conference brought 19 leading NET physicians, and multiple other patient advocates together, including my own oncology team at The Ohio State University — The James Comprehensive Cancer Center. Here’s what I found as I explored this conference along with the hundreds of other patients and community supporters following along from across the globe.

The 10-Minute Tutorial We All Need From the Start

Any NET patient remembers the first time they learned that acronym. And most will remember the disoriented confusion that follows, as you try to get a grasp on having a rare condition that acts much differently than cancers your friends or family might have experienced. 

The conference led with my own oncologist, Dr. Bhavana Konda, giving an ultra-clear and informative tutorial on what NET really is. The next time I see her I will let her know that those 10-15 minutes of learning should be mandatory viewing for anyone heading into their first NET appointment. It took much longer for me to piece this information together on my own, pulling pieces of information from my own first meeting with her where she flipped a paper over and started drawing some of the concepts to introduce me to my version of this cancer.

As NET patient Jed shared later in the conference, having “as much information as possible…was very reassuring to me.” So, if I ever come across a newly diagnosed NET acquaintance in one of the many online support forums, I will recommend my own oncologist’s overview, so they aren’t trying to figure out what Gallium 68 and Ki-67 mean on Google at 3 am, learning and worrying.

The Long and Windy Path to an Accurate Diagnosis

My tumor had been growing for years, possibly even a decade, before I found out.

It had been the source of numerous symptoms that had been mistaken for perinatal symptoms, menopause (which I’m not in), a thyroid disorder, various gastro and neuro conditions (that I don’t have) and more. I found out in this conference that I’m far from alone, and in fact, this is a common complaint when someone finally discovers it was NET all along. Dr. Callisia Clarke, surgical oncologist at Medical College of Wisconsin, shared that it's so prevalent that she makes room for it at the beginning of her appointments before jumping into treatments. 

Like me, she says many patients come to her having had some “uncomfortable interactions with the healthcare setting…and may have had mild symptoms that have been ignored or not worked up for several years,” she shares. “I try to give them the opportunity to work through their frustrations with what is almost always a delay in diagnosis.” Only after they get through those emotions do they discuss treatment plans, she says. 

I left her session with validation that the nearly decade long medical mystery, which meant numerous doctors writing off my symptoms or promising to “wait and see” was not only common, but somewhat traumatizing. That recognition helps me start to heal, and retrust that when my body is telling me something, it’s right — even if nobody is sure what it means yet.

Isn’t There a Blood Test for That? 

After two surgeries to remove my tumors and lymph nodes, my Stage 3 cancer was “NED”, or No Evidence of Disease. I started a 10 year clock of watching and waiting to determine if I’d be part of the 65% of people in my exact situation with no recurrence, or part of the other 35% who had metastasizing, and therefore Stage 4 NET. The scanning every three months schedule commenced. 

In explaining all this to a friend with colorectal cancer, she asked — isn’t there a blood test like I got to detect recurrence early? When I asked my medical team about it, they simply said no, I wasn’t a candidate for that. At the time, I sort of thought I’d been blown off. But, after listening to Dr. Thorvardur Halfdanarson, Mayo Clinic discuss biomarkers and blood tests in his session, I realized why it is actually a much more complicated answer, best summarized as “there’s not a reliable one ready to widely use for NETs yet.”

In Halfdanarson’s session, I learned the complexities of my question, and that no biomarker is ready to take the place of scans. I felt empowered learning about 5-HIAA testing, and more educated to bring questions about that test to my next oncology appointment. Most importantly, I got an inside view into the multitude of considerations oncology teams have when they determine if a test will do more harm than help. For example, Halfdanarson shared that super early detection, without a scan with a visible tumor, might not do anything except increase anxiety and pile additional testing costs onto patients. So, I will look at future therapies as they are approved and recommended with the same consideration — what does it add to the potential treatment plan, but what are the less obvious risks.  

Living With the Bucket List and Depression of NETS

One of the most valuable sessions was from another new NET patient, Rashilda’s story. I perked up at her honesty that when she was asked to give this talk in February, she felt she was “barely surviving.” I’d been there as well, especially in the gray area between knowing I had cancer but not knowing how bad it was. I’ll forever be changed by that time where I didn’t know if I’d have just a few years left with my young family, or the decades I’d been expecting.

I learned from Rashilda what to do the next time a scan doesn’t go my way, and the dark cloud moves in. She restarted therapy, and started going to a NET support group to manage anxiety around her next scans. And she speaks to the unique experience some NET patients have, where they go on to live their normal lives, as they carry their diagnosis around in their hearts and bodies.

“Unlike many other people with different forms of cancer, I still work, I still do all the things that I used to do, before the diagnosis. So while I do have this disease and it’s been a mental struggle, physically I’m still able to do all the things I love doing,” she says.

I was inspired by Rashilda who says her NET diagnosis helped her prune her daily commitments to only focus on activities that brought her joy. “If it’s something I don’t want to do I’m not going to force myself to do it,” she says. She’s working down a bucket list full of concerts and travel, and I want to make one too now. 

“I’ve made the intention of living day to day, not worrying and not stressing and not harping on the things I have no control over,” she says. 

I left this conference with a clear sense of what I can control, too — selecting and trusting a top NET care team, seeking out high quality and new information about my disease, and living with purpose and intentionality.

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