Fear wanes with knowledge

“You hope it is something weird, not cancer. My kids were so young. My instant thought was it’s not enough time.”

Unsure what to do, she called the surgeon who had operated on her husband’s gallbladder. He guided her through the process, and arranged colonoscopies, biopsies and other scans. Living in rural West Virginia, where specialists are scarce, Dusty was relieved to meet a locum oncologist from the renowned Mayo Clinic. The news was devastating. “She told me she was going to be direct: it looked like pancreatic cancer that had spread. I needed to be ready for the fight of my life, and even with everything that could be done, we could be talking about three to six months.”

A different diagnosis

However, a follow up liver biopsy told a different story. That night, the surgeon called: “We got on the phone, and he told me ‘I think I have good news – you have something called neuroendocrine tumors’.” Dusty had never heard about NETs. She dove into research, reached out to patient support groups, and learned that her diagnosis – GEP-NET, grade 2 – was good news compared to pancreatic cancer. At 41, she was told she could expect at least 10 more years.

“I walked out crying, but happy tears. Ten years meant seeing my kids grow up.”

Taking control of her care

Dusty sought second opinions and underwent surgery at the National Institute of Health (NIH) where 22 tumors were removed, leaving five smaller ones. She also began medical treatment immediately after diagnosis. Today she coordinates care across multiple states – NIH, Mayo Clinic, Ohio State University, and her local hospital. “It’s complex. I have to understand my care to make it cohesive. Before this, I didn’t know how to advocate for myself. Now I’m proactive in every step.”

“This disease has no finish line. You have to play the whack-a-mole and keep fighting.” Dusty hopes for a cure or treatments that hold it at bay longer. “I plan to live a long time, so I weigh every option carefully.”

Paying it forward

She stays active, working with kids’ activities at her church and raising two young children. “Having a family and facing this disease is difficult but also helps me. It makes me live in the present and gives me reason to fight beyond myself.” Now she advocates for others. “When I was diagnosed, I was terrified. For months, I woke up every day with a surge of fear – like the adrenaline before a car crash. It was awful. I don’t feel that anymore because I understand my disease thanks to others in the NET community who have guided me. There are still moments of fear or sadness, but they’re just moments, not my every day. Having someone walk beside you and help you out of that fear is such a gift. Now, being able to give that forward is incredibly rewarding.”

Her outlook remains hopeful:

“I believe there will be a cure in my lifetime, or at least, it will be a manageable disease that people die with, not of.”