Michelle's Rare Cancer

Many have had it, but you've likely never heard of it

By Michael Ertel & Michelle Ertel

May 21^st, 2025

Michelle Explains Her NET Cancer

What’s Neuroendocrine Cancer? My Story

Neuroendocrine cancer, or NET, is a rare beast—about 12,000 new cases a year in the country. Steve Jobs, Aretha Franklin and Jimmy Buffet all passed from forms of NET cancer.

From a technical sense: it starts in neuroendocrine cells, which are like the body’s hormone factories with a side of nerve-cell vibes. These cells, found in places like the lungs, pancreas, or digestive tract, can go rogue, forming tumors that sometimes pump out excess hormones, leading to some wild symptoms.

For me, it began in my small intestine (the ileum, to be precise) and spread to my liver, hitting me hard. Now at stage 4, I’ve been told it’s incurable, but there are treatments to slow it down and ease symptoms—think palliative care with a fighting spirit.

“Now at stage 4, I’ve been told it’s incurable, but there are treatments to slow it down and ease symptoms—think palliative care with a fighting spirit.”

Carcinoid Syndrome

I also deal with carcinoid syndrome, a condition some NET patients get, where the tumors flood my system with hormones. This causes stuff like intense fatigue, breathing trouble, facial flushing, heart palpitations, and major digestive issues. These symptoms are sneaky—they don’t scream “cancer,” so diagnosis often takes time.

I have been on a several treatment paths, including a targeted radiation treatment called PRRT. I get infusions every three weeks to manage symptoms and slow the cancer’s growth. A side effect of the treatments? I’m now diabetic. But always looking for a silver lining, the Ozempic’s got me covered, with the benefit of weight loss.

So.... what's next for me?

Every three months, I get scans to check on things. My last scans at Mayo Clinic in Jacksonville brought good news: I’m stable, with minimal growth since the previous scan. That’s a win, and I’m hoping for more of the same at my next one. We know the news won’t always be great, but we’re ready to face it when it comes.

In the meantime, I’m soaking up life—traveling, seeing beautiful places, and cherishing every moment with my incredible family and friends. My kids and their partners are my heart, and my husband, Michael, is my rock, stepping up as my caregiver whenever I need him. I’m endlessly grateful for the love and support surrounding me. Here’s to living fully, no matter what comes next.

More Details From Mayo

The following section is directly from the Mayo Clinic. More details can be found on the Mayo Clinic website here:

https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

Overview

Neuroendocrine tumors are cancers that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells.

Neuroendocrine tumors are rare and can occur anywhere in the body. Most neuroendocrine tumors occur in the lungs, appendix, small intestine, rectum and pancreas.

There are many types of neuroendocrine tumors. Some grow slowly and some grow very quickly. Some neuroendocrine tumors produce excess hormones (functional neuroendocrine tumors). Others don't release hormones or don't release enough to cause symptoms (nonfunctional neuroendocrine tumors).

Diagnosis and treatment of neuroendocrine tumors depend on the type of tumor, its location, whether it produces excess hormones, how aggressive it is and whether it has spread to other parts of the body.

Causes

The exact cause of neuroendocrine tumors isn't known. These cancers begin in neuroendocrine cells that have traits similar to those of nerve cells and hormone-producing cells. Neuroendocrine cells are found throughout your body.

Neuroendocrine tumors begin when neuroendocrine cells develop changes (mutations) in their DNA. The DNA inside a cell contains the instructions that tell the cell what to do. The changes tell the neuroendocrine cells to multiply rapidly and form a tumor.

Some neuroendocrine tumors grow very slowly. Others are aggressive cancers that invade and destroy normal body tissue or spread (metastasize) to other parts of the body.