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As I was leaving my oncology appointment yesterday, I was surprised to see a dear friend sitting in the waiting room with a folder for the oncologist. My heart sank as I walked toward Jonathan. I felt sad, thinking that cancer had entered his life too. He quickly introduced me to the man sitting next to him—a friend he drives to medical appointments. I admit, I felt relieved.

His friend wore a knitted cap over his bald head, and his skin lacked a healthy glow. It was clear his treatment was much harder than my routine injection every 28 days. When he asked about my treatment, I struggled to respond. I sat there with a full head of hair and about fifteen extra pounds. My usual “elevator speech” failed me. I felt almost guilty explaining my highly treatable, but incurable, cancer to another cancer patient whose treatment I would not want to trade places with.

Later that night, as I thought about the conversation, I decided I needed to practice and improve how I talk about Neuroendocrine Cancer. I want to be better prepared to explain it to the general public, to other cancer patients, and especially to my fellow NETs patients.

For the general population, I need to refresh my elevator speech—a brief, two- to three-minute explanation of my little-known cancer. The goal is not to overwhelm people, but to give a simple overview of Neuroendocrine Cancer. I usually describe it as highly treatable, but currently incurable, and involving multiple organs. I never mention that I was Stage 4 at diagnosis.

When speaking with cancer patients who do not have NETs, I try not to minimize the challenges that NETs patients face. I openly admit that I am grateful for a treatment that is “just” an injection every 28 days compared to more aggressive therapies. Right now, my prognosis is stable, but I understand how quickly that can change. The word incurable carries a heavy weight. I genuinely celebrate those who get to ring the bell at the end of treatment. At the same time, I owe it to myself and the NETs community not to apologize for a treatment that may appear easier at first glance.

For my fellow NETs patients, both in person and online, I want to grow my knowledge and vocabulary around Neuroendocrine Cancer. I want to better understand how different and complex this disease can be. I want to use the right words when I describe it. I also want to remind others—and myself—that it is completely normal to want to laugh and scream in frustration at the same time. I will gladly join you in both.

Our online NETs conversations are a vital lifeline—especially for those living in rural areas, those who struggle to find support, and those who face dark thoughts in the middle of the night. For the past ten years, the NETs community has supported me again and again.

As I share my experiences with others, I try to remember a few important things:

• My story is personal. What is true for me may not be true for you.
• Because Neuroendocrine Cancer is so varied, there is no single treatment path that works for everyone.
• NETs specialists may approach care differently, and that’s okay. Getting a second opinion can be helpful.
• The greatest benefit of talking with other patients is gaining perspective, not finding a perfect answer.
• Words matter. Speaking in absolutes often comes from emotion rather than fact.
• Wisdom grows from expertise, innovation, and compassion—try to include all three.
• Not every day living with NETs is a good day, but there is something good in every day. Stay open to finding it.

At the end of the day, this is why NCAN exists.To remind us that even when the words are hard… even when we don’t know how to explain our diagnosis… even when we feel like we have to “justify” our version of cancer…

We are here for you. For the newly diagnosed. For the long-haulers. For the caregivers. For the people who feel brave one minute and completely overwhelmed the next.

Neuroendocrine Cancer is complex, but you don’t have to navigate it alone. Call if you need us.