Before Thanksgiving of 2023, my wife, Stacey, had a colonoscopy and was told after the procedure that her doctor had come across a blockage and was suspicious of cancer. Stacey then had a second colonoscopy before Christmas so that her doctor could biopsy the blockage to see if it was malignant. Stacey was told shortly thereafter that the mass in her small intestine was cancerous.

 

Stacey had surgery in January of 2024 to remove what was originally believed to be just one cancerous mass. During surgery, a second mass was discovered and removed along with a section of her small intestine, a portion of her large intestine, and her appendix. Future scans and MRIs determined that the cancer had spread from the source in her intestine to her liver, pancreas, and lymph nodes in her neck and near her heart. Stacey is diagnosed as a stage four cancer patient with a rare cancer called Neuroendocrine Cancer (NETs).

 

Neuroendocrine cancer originates in neuroendocrine cells, which are specialized cells that produce hormones and neurotransmitters. Neuroendocrine tumors can occur in various parts of the body; however, they often originate in the gastrointestinal tract, which is where Stacey’s originated. Her original tumor was at the end of her small intestine, the ileum, where the small intestine meets the large intestine. The exact cause of neuroendocrine cancer is unknown.

 

As a stage four neuroendocrine cancer patient, Stacey will never be cancer-free. While some limited medical options potentially slow the growth of the tumors, these options are limited. Stacey’s care is currently coordinated between the University of Michigan and the University of Iowa, with regular trips to both for blood work, MRIs, and dotatate PET scans to monitor potential growth and spread of the tumors. For note, a dotatate PET scan is a specialized imaging test that uses a radioactive tracer to detect and characterize neuroendocrine tumors throughout her body. Stacey is given this radioactive tracer through an IV that must travel throughout her body for an hour before she is given the scan, which will essentially light up the cancerous areas throughout her body.

 

While we have not shared Stacey’s diagnosis and the path she has endured thus far with very many people, with this being just a glimpse of what she has gone through, Stacey has agreed to allow me to host a walk to help support not only herself but others like her with NETs. Through awareness and advocacy, we hope to help play a part in not only prolonging her life, but the lives of other patients, as this type of cancer is often misdiagnosed as common illnesses.

 

Current and future clinical studies can only move forward through patient awareness and advocacy, educational research, and funding to help patients like Stacey. With that in mind, as part of a larger movement through NCAN (Neuroendocrine Cancer Awareness Network), I will be hosting this walk, along with our children, to support Stacey and patients like her. This walk is being held during Neuroendocrine Cancer Awareness month, which is November, to help support programs available to NET patients. We will be walking with Stacey on Saturday, November 8th, at 10:00 am, along the path surrounding Henry Ford Genesys Health Park. We will begin the walk from the Northwest corner of the Henry Ford Genesys Health Club parking lot, 801 Health Park Blvd. Grand Blanc, MI 48439. Feel free to share this with anyone who may know Stacey or our family. All are welcome on this walk. The entire path is approximately 2.7 miles long; however, there are opportunities along the way to make your walk shorter if you choose.

 

In addition to walking with Stacey on November 8th, we are taking donations to support the Neuroendocrine Cancer Awareness Network by using the link at the top or bottom of the page, and then clicking “SPONSOR ME” and contributing any amount you wish to Stacey’s Walk. The NCAN page requires a minimum donation of $10. Even if you cannot make the walk, please consider sponsoring Stacey with a donation.

 

Below is where funding helps to support patients.

• Annual regional NET Patient Conferences with top NET experts

• A 365-day patient/caregiver-run hotline (9 am–9 pm EST)

• Monthly podcasts featuring NET experts, patients, caregivers, and advocates

• Bi-monthly live Q&A sessions with NET experts

• Monthly blog posts on Living Well with NET Cancer

• Monthly virtual patient support groups via Zoom

• Local in-person NET support groups across several states

• A YouTube Channel with 10+ years of NET expert presentations

• Free new-patient information packets mailed on request

Thank you for anything you can do to help support Stacey and neuroendocrine cancer patients like her.

 

Sincerely,

Steve, Stacey, Family, and NET Patients Everywhere