NETSTalk

“Despite the forecast, live like it is spring.” — Lily Pulitzer

In just four months, I will reach a milestone: 10 years since my neuroendocrine cancer diagnosis. To say I’ve been doing a lot of thinking lately is an understatement.

As I learned more about NET cancer, I began following the idea of the “5 Es,” known to trigger symptoms of Carcinoid Syndrome for people like me with a small bowel tumor. I had all the classic symptoms for years before I was diagnosed, so I became determined to reduce these triggers as much as possible.

Eating: I treated changing my diet like a challenge I wanted to win.
Exertion: I shifted from regular yoga to chair or senior yoga.
Ethanol: Alcohol simply stopped being enjoyable.
Epinephrine: I studied how adrenaline affects my tumors with the focus of a middle school science project.
Emotions: This one has been the hardest.

For many years, stress was a constant in my life as a mother, daughter, wife, sister, in-law, and small business owner. It wasn’t about whether I could handle it, but how much I could take on. After my diagnosis, once I understood how harmful stress could be, I worked hard to avoid it.

Now, ten years later, my tumors are still mostly stable, and I believe those efforts have helped. But looking back, I realize most of my changes have been small, except when it comes to my emotions.

I’ve changed. I now run everything through a mental filter before I act. I don’t act on impulse anymore, but I’ve also lost some spontaneity. I’m less expressive, more careful in conversations, and sometimes I hold back completely. At times, I wonder if I’ve become too cautious.

Living with cancer has a way of making you constantly reflect on your life. I’ve been living with an uncertain future, and I’m starting to wonder if part of how I’ve coped has been by quietly shutting down my emotions.

As I approach this 10-year mark, I want to celebrate, but also to shift. I want to open up more, try new things, and feel excited about life again. I want the courage to take on new challenges and even revisit dreams I once had.

Yes, my next scan could bring bad news. Life is unpredictable for everyone, not just those of us with a cancer diagnosis. But I want to focus on what’s possible again, even if I ultimately choose a simpler, more routine life.

Wherever you are in your NET cancer journey, I hope you choose to live like it’s spring again. Look for new beginnings. Enjoy the small joys. Let life refresh and restore you.

NCAN is here to support you as you reset your outlook and hold on to hope for life, love, and laughter. Reach out if you need us. We’re here. For you.

“Living with NETs can be such a roller coaster ride some days.”

“Life is a roller coaster whether you have NETs or not. You just have to learn to enjoy the ride.”

So ended a recent text exchange with my friend who lives several states away and is also living with NETs. We had been discussing her recent social media posts, which together received well over 300 responses. Like many others, I was deeply moved by her honesty and the way she described experiences that so many of us feel but struggle to express.

Living with a chronic illness is challenging on many levels. The physical toll is only part of the story. The emotional weight, the uncertainty, and the quiet adjustments of daily life often remain unseen. Not all of us can put those feelings into words as powerfully as my friend has. With her permission, I want to share some of her reflections.

“I’ve learned that this disease is not something you simply ‘get through.’ It stays with you. The constant monitoring, monthly injections, endless appointments, and the bone deep fatigue become part of your everyday life. Over time, it wears on more than just your body. It changes how you see yourself.”

“There are days when I’ve come close to giving in. And then there are days when I push forward simply because that’s what we do. I put on a face of health and normalcy for my family and the world. I smile, I reassure, and I say I’m okay even when I’m not.”

“What once took a couple of hours can now take all day, or longer. I make plans with the best intentions, only to cancel them because my body refuses to cooperate.”

“I’ve told myself it’s just age catching up with me. But deep down, I know this is NET.”

“I am profoundly grateful to still be here. That gratitude carries me through many days. But there are times when the weight of this disease becomes too heavy, and I need a day in bed just to recover. Living with NETs is not a one time fight. It is a continuous balancing act between pushing forward and knowing when to rest.”

“NET is both a blessing and a curse. It gives us time, but it asks us to live within limits we never chose. I am happy to be alive, yet I grieve the loss of feeling truly healthy.”

“If you are living with NETs and feel like you are leading a double life, please know this. You are not weak. You are not failing. And you are not alone. Every day you show up in this body is an act of strength, even when no one else can see it.”

She also shared these affirmations for living with NETs:

• My experience is real, even when it is invisible to others.

• Rest is not giving up. It is part of surviving.

• I am allowed to grieve the life I had while being grateful for the life I have.

• My worth is not measured by productivity or appearances.

• I am doing the best I can in a body that carries more than most can see.

• I am not alone. Others walk this path with me.

• Showing up, in whatever way I can today, is enough.

These words resonated with hundreds of people because they speak to a truth many in the NETs community understand deeply. Living with NETs is not a single battle to be won. It is an ongoing journey of adaptation, resilience, grief, gratitude, and hope.

The NCAN family wants you to remember that you are not alone. Every day with NETs can bring struggle, gratitude, or both at once.

If you need support, understanding, or simply someone to listen, we are here for you.

Whatever today looks like, you do not have to face it alone.

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.

For many of us in our NETs community, World NETs Awareness Day on November 10, 2025, brought up an interesting topic for discussion and reflection. Which is more important, NETs awareness or NETs research? It is not a simple question, and the answers can vary quite a bit depending on who you ask.

• Research requires advanced educational instruction and experience.
• Research requires motivation.
• Research requires money, and often very large amounts of it.
• Research brings us new diagnostic tools, better treatments, and improved patient outcomes. But even before these things are possible, research is built upon a recognized need.

• Awareness is the catalyst.
• Awareness identifies the need.
• Awareness is the instigator for patient registries.
• Awareness starts the drive for additional funding within the medical field, the government, and philanthropic organizations.
• Awareness leads to more clinicians becoming familiar with the disease.
• Awareness is a driver for advocacy, policy change, and additional research.

It is probably safe to say that awareness builds the foundation that allows research to occur.

What does this mean for me, an individual oncology patient whose Neuroendocrine Cancer diagnosis has opened a whole new world?

I am greatly indebted to the NETs research that has provided me with accurate diagnostic tools and procedures, quality surgery from highly respected NETs specialist surgeons, effective disease management treatments, and reliable surveillance tools. I am the appreciative recipient of decades of work, and deeply grateful that I arrived at a path forward that allows me to continue living a rewarding and mostly healthy life.

I am equally indebted to the awareness efforts made by NETs advocates and patients in the years before my diagnosis. For decades, Neuroendocrine Cancer has been considered a rare disease. It was first recognized in 1907 as a slow-growing intestinal tumor that behaved differently from other cancers. The term “carcinoid,” often used to describe it, translates to “cancer like.” Not until the 1960s did the medical field begin to expand its research efforts. It took until the turn of the century for additional first-line treatments to become available and for scientists to better understand that these tumors arise from neuroendocrine cells found throughout the body.

Now, a quarter of a century later, NET Cancer is on the cusp of no longer being considered rare. I have hope that this will result in a larger share of cancer research funding. I have hope that more scientists and researchers will be drawn to the uniqueness of this disease. I have hope that pharmaceutical companies will continue to support our needs.

It has become clear to me that awareness of Neuroendocrine Cancer has been, and will continue to be, an opportunity for all of us to contribute to the advancement of our care.

In 2026, the Neuroendocrine Cancer Awareness Network (NCAN) will once again expand our opportunities to increase education and public awareness for NET Cancer. As we become more knowledgeable and more vocal, we help support research efforts with our gratitude, our advocacy, and our stories. NCAN will continue its support for research as well.

In just a few short weeks, NCAN will share the 2026 calendar of patient conferences. We will be notified of new YouTube podcast topics and speakers. The NCAN NETs hotline will continue to offer confidential conversations with patients. Support group meetings, both virtual and in person, will continue. Opportunities to participate in pharmaceutical surveys, share your story on NETs Get Real podcasts, and contribute to the growth and strength of our NETs family will remain available. There is a place for everyone who wants to advocate for improvements and advancements in our care.

So, which is more important, research or awareness? There is no universal answer. Research and awareness depend on each other. NCAN invites you once again to join us in being the spark that drives everything that supports and encourages our ability to live well with Neuroendocrine Cancer.

We are here for you if you need us.

“Wish You Well” is the name of a novel by David Baldacci that I first read in the early 2000s. The title spoke to me. My father had recently passed away, and our oldest child was leaving home for college. The book’s underlying theme of finding acceptance and looking for joy in the present has stayed with me for more than 20 years. It still shows up when I’m struggling or facing a hard decision, reminding me to look for joy even when things feel heavy.

A few years later, a similar phrase entered my life: “Wish You Enough.”
This one arrived at a time when my days seemed to swing from good to bad almost daily. The hard days could drag me down and keep me there, and the good days felt few and far between. I knew I had to break that cycle, so I started looking for bright spots and silver linings, even on the hardest days.

Surprisingly, once I changed how I looked at the hard days, the good days felt sweeter without much effort. As I became content with small moments of appreciation, the hard days had less control over my emotions.

Living with Neuroendocrine Cancer can bring a lot of hard days. It can also bring acceptance, contentment, and a deeper appreciation for the people and moments that lift us up. So this year, I want to share these Holiday Wishes and Affirmations with you.

Happy Holidays from our NCAN family to you and yours.
We wish you well. And we are here for you when you need us.

 

Find out more about how YOU can help the NET Community.

People often ask, “Why focus on awareness? Wouldn’t those efforts be better spent funding research?”

It’s a fair question. Research leads to better treatments and, eventually, cures. But awareness is what makes research and every other kind of progress possible.

Awareness Saves Time and Lives
Neuroendocrine cancers (NETs) are rare, but not as rare as many people think. Thousands of people are diagnosed each year, and many more live for years without answers because their symptoms are mistaken for something else.
On average, a NET patient waits five to seven years for the correct diagnosis. That means years of uncertainty, misdiagnosis, and sometimes missed opportunities for treatment.
When doctors, nurses, and even patients know what to look for because of awareness efforts, those years can turn into months. That difference can save lives.

Awareness Builds Community
Awareness is not only about information. It is about connection.
When patients find NCAN, they realize they are not alone. Awareness brings together families, advocates, and survivors who lift one another up and share knowledge and hope.
That sense of belonging is powerful. It inspires people to walk, volunteer, advocate, and give back. Awareness creates the community that keeps this movement alive.

Awareness Drives Funding
People cannot support a cause they have never heard of.
Every time someone sees a zebra ribbon, shares a Strides for Stripes post, or wears a NET awareness shirt, more people learn about these rare cancers and many go on to act.
Sponsors, corporate partners, and donors often find NCAN because of awareness events. Each new connection adds to the resources that make patient programs, education, and research grants possible. Awareness opens the door, and funding walks through it.

Awareness Inspires Action
When people know, they care.
When people care, they act.
Awareness turns bystanders into advocates. It helps people push for better treatments, tell their doctors about symptoms that might otherwise be overlooked, and support loved ones navigating a rare diagnosis.
The more people who know, the stronger the movement grows.

November Is NET Cancer Awareness Month
Each November, the NET community joins together around the world to share stories, raise funds, and shine a light on this rare disease.
It is a time to educate, connect, and inspire action, and a reminder that awareness does not end when the month is over. Every post, every walk, and every zebra shirt continues that mission all year long.

Awareness Is the First Step Toward Change
Research changes the future, but awareness is what makes that future possible.
It brings patients to doctors, doctors to accurate diagnoses, and supporters to fundraising pages. It helps all of us move closer to better outcomes for the NET community.
Every post, every walk, every zebra shirt matters.
Awareness is more than knowing. It is the spark that starts everything that follows.

Join us in spreading awareness and funding hope.
Together, we are making sure no one faces NET cancer alone.
And remember, we’re always here for you if you need us.

When you see a zebra, what do you notice first? Its stripes. No two patterns are alike—just as no two journeys with neuroendocrine cancer (NETs) are the same. The zebra has become the international symbol of NET Cancer Awareness because it reminds us of the rarity and uniqueness of this disease, and of the strength it takes for every patient to keep moving forward.

For over 20 years, the Neuroendocrine Cancer Awareness Network (NCAN) has been walking alongside patients and caregivers, offering not just education and resources, but also community, compassion, and hope. Founded in 2003 to shine a light on a disease too often overlooked and misdiagnosed, NCAN has grown into a lifeline for thousands. From expert-led conferences and support groups to podcasts, hotlines, and free educational resources, NCAN is there—step by step, stripe by stripe.

Each fall, our community comes together for something special: Strides for Stripes. This annual walk isn’t just a fundraiser; it’s a celebration of strength, connection, and hope. Participants proudly wear zebra-striped shirts that say to the world: we are here, and we are stronger together.

The funds raised during Strides for Stripes make it possible for NCAN to continue offering life-changing programs, including:

• Annual regional NET Patient Conferences with top NET experts
• A 365-day patient/caregiver-run hotline (9am–9pm 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 robust YouTube Channel with 10+ years of NET expert presentations
• Free new-patient information packets mailed on request

This year’s walk kicked off on September 1st and continues through the end of the year—giving everyone the chance to participate, whether virtually or in person. You can walk solo, join with friends, or build a team to show your stripes in honor of a loved one. Every step you take makes a difference.

Because when you walk with NCAN, you’re not just raising awareness—you’re carrying hope forward.

Register today, lace up, and walk with us. Together, we’ll turn stripes into strength and keep walking toward a brighter future for NET patients and their families.

And always remember: If you need us, we are HERE.

I recently gained a new member on my medical team: an APP.
No, not something you download to your phone. APP stands for Advanced Practice Provider.

Talking about your cancer diagnosis can be incredibly challenging. Early on, patients often find themselves navigating unfamiliar medical terminology while simultaneously figuring out how to break the news to those who need to know—family, employers, and close friends. At the same time, we’re expected to field questions from well-meaning acquaintances—and sometimes even total strangers—which can require a whole different level of emotional and social bandwidth.

The Numeric Rating Scale keeps getting me into trouble at my doctor appointments. You know the one—ten little round faces ranging from serene to absolutely hysterical.

My daughter-in-law and I locked eyes over the head of my oldest grandchild as she silently mouthed the words, “Are we doing this now?” Just like that, the moment I had been dreading had arrived.

For more than 20 years, NCAN has brought together Neuroendocrine Cancer patients, caregivers, top NET specialists, pharmaceutical reps, and advocacy organizations through national and regional conferences. These gatherings offer a rare opportunity to learn, connect, and support one another through shared experience and expert insight.

At this April’s Charlotte, NC conference, I was reminded not only of how much I’ve learned—but also of how much more there is to understand. Reuniting with familiar faces was uplifting; meeting new ones, inspiring. And hearing directly from the experts? Invaluable, as always.

Attendees often tell us they return for the fellowship, the laughter, the food, and the comforting hugs—those small moments that mean so much. But it’s the presentations, panel discussions, and medical insights that truly offer direction, reassurance, and often a much-needed push to reexamine our care or advocacy.

This year, I realized that the panel discussion is my favorite part. The respectful, candid dialogue among specialists—each bringing unique experience and perspectives—helped me better grasp the nuances of living with and managing this disease.

Over the past eight years, I’ve learned from more than a dozen top NET specialists and many more medical and industry professionals. These voices have deepened my understanding in ways no single consultation ever could. Where else can you ask a personal (cleverly disguised as non-case-specific) question and hear real-time responses from multiple experts?

We naturally grow attached to our own doctors—and with good reason. But hearing diverse expert perspectives reminds us that no single approach works for everyone. Our NET community is unique in that our specialists don’t shy away from differing opinions—they share them openly to help us see the complexity and individuality of our disease. Second opinions aren’t confrontational—they’re wise. And often, they’re encouraged.

That variety of thought isn’t conflicting—it reflects the complexity of Neuroendocrine Cancer. These conferences help us move beyond our own assumptions and build even greater trust in informed, collaborative care.

NCAN conferences are more than educational—they’re transformational. They remind us that we are part of a strong, compassionate, and informed community that is always growing. NCAN continues to serve as a vital bridge—connecting patients and caregivers with the guidance, clarity, and hope we all need. The insights gained here can change lives, strengthen relationships, and inspire new directions in care. If you’ve never attended, there’s no better time. Visit the NCAN Events page to find an upcoming conference near you, and don’t forget to explore the NCAN YouTube channel to catch powerful talks from past events. Like and follow us—because together, we’re learning, thriving, and never alone.

Find out more about how YOU can help the NET Community.

“It was a shock in the beginning, but now I live my life in the most precious ways.”

“I never imagined that cancer would change my life in a positive way.”

“I soak up the little things, and my cup is always full.”

Recently, an online conversation among neuroendocrine cancer patients shared these sentiments. The phrase “the most precious ways” struck a chord with me. A natural optimist, I have surprisingly been treated for depression since 2000. At the time, only my closest family and friends knew of my struggles. It wasn’t until my NETs diagnosis that I felt comfortable sharing this personal part of my journey. Thankfully, a few years of therapy and a continued, very low dose of an antidepressant work in tandem with my intentional choice to always search for the bright side of life.

Once the shock of a cancer diagnosis begins to wear off, or at least becomes absorbed into your thinking, it can be a challenge to find acceptance. We all struggle with the dread of a potentially shortened life span, the sorrow of lost opportunities, and the realization that some aspects of life are now beyond our control. These feelings are natural. What’s important is finding a way to manage them.

Facing Negativity with Intention

Toxic positivity is not the answer. It denies and minimizes negative emotions, making it harder to process and move forward. Instead, we must learn to face negativity head-on—identify it, acknowledge it, and find ways to manage it. A period of grieving is normal and may resurface from time to time. That’s okay. Comparing your grief to someone else’s, however, is not. Instead, making an effort to connect with others in similar situations can be incredibly helpful. While we should allow ourselves to feel emotions like stress, anxiety, or sadness, we must also strive for balance. Managing your attitude toward a chronic illness is a lifelong process—never quick or easy, but always evolving.

As the patient above expressed, it is possible to embrace life even in the face of illness. Many of us have learned to subdue our angst, give it space when necessary, and share when possible—all while seeking the small joys that keep us inspired.

This conversation reminded me of the very first neuroendocrine cancer patient I met. Her positivity was contagious, and I remain forever grateful for our brief but meaningful friendship.

“A great attitude becomes a great mood.
Which becomes a great day.
Which becomes a great year.
Which becomes a great life.”

Sharing your emotions is important. Finding the right community to do so is essential. At NCAN, we strive to be that community for you. Whether through support groups, patient conferences, or hotline phone conversations, we are HERE to help you navigate your journey. You are not alone. Together, we can learn to live life with neuroendocrine cancer in the most precious ways.

DONATE HERE

Remember, NCAN is always here for you. Whether you need resources, support, or just someone to listen, reach out to us at info@netcancerawareness.org.

Find out more about how YOU can help the NET Community.

• The real flex is staying grateful even when times are tough.

Download Printable Quotes Here.

Perhaps you’ll keep these taped to your refrigerator or bathroom mirror and adopt one each month to focus on when faced with challenges. There are more than twelve here because we can all use a little grace to try again tomorrow.

NCAN strives to offer patients hope, encouragement, and inspiration to deal with the challenges of a neuroendocrine cancer diagnosis. We hope that 2025 presents itself as a year of clarity, awareness, and acceptance, making it the best year yet for you and your loved ones.

Exciting opportunities await NCAN and those it supports in 2025, and we thank you for your continued SUPPORT. Together, let’s uplift the Neuroendocrine Cancer Community and face the future with resilience and optimism. And remember, if you need support in 2025 we will be HERE ready to help.