NETSTalk

“Life is like riding a bicycle. To keep your balance, you must keep moving.” — Albert Einstein

A recent meditation by Pirier Jones Grosman made me think about the stresses we all carry, the ones our family, friends, and coworkers may never see. Ms. Grosman calls them the “invisible burdens we carry.”

Hello to Fall, Y’all!

Every year as the calendar inches toward September, I get an urge to get my house in order. I’m not talking about my final arrangements, but a genuine urge to pick up our surroundings from the hectic summer pace we keep and get ready to enjoy all that Fall has to offer!

Last week I attacked our medicine cabinet and first aid kits. Oh joy! A recent article from the Cleveland Clinic inspired me, and perhaps it will inspire or encourage some of you as well!

I was surprised to see how many expired OTC and prescription medicines were taking up valuable real estate in drawers in our dining room. Yep, you read that right. Pharmacy experts urge us not to store medications where they are overly exposed to moisture, heat and humidity. Bathrooms and kitchens may not always be the best choice.

I keep my volumes of prescription meds in a tall cabinet in our dining room so that once a month I can fill my weekly pill boxes all at the same time by spreading out the bottles and boxes on my large dining table. Do you have a clever storage location?

Expired medicines can have potential risks. They may lose some of their potency and not treat a medical issue as intended. Some medications may also become contaminated or otherwise change over time, which is why expiration dates and proper storage matter.

While some medications may retain their potency beyond the printed expiration date, there’s no guarantee. When in doubt, replace expired products and ask your pharmacist if you have questions. Medications used to manage chronic or serious health conditions should always be kept current.

Liquid medicines and products such as eye or ear drops may also be more susceptible to contamination, particularly after they have been opened. Pay close attention to their expiration dates and any instructions about how long they should be used after opening. And remember, prescription medications should never be shared with others unless specifically directed by a healthcare professional.

Discarding old medications is not that difficult. The best option for most expired or unused medications is a drug take-back location or mail-back program. Many pharmacies and communities offer these programs.

If a take-back option isn’t readily available, many medications can be disposed of in your household garbage. Remove them from their original containers and mix them, without crushing pills or capsules, with something undesirable such as dirt, used coffee grounds or cat litter. Place the mixture in a sealed bag or other closed container before putting it in the trash. Don’t forget to remove or scratch out your personal information from empty prescription bottles and packaging.

Some medications come with specific instructions to flush them when a take-back option isn’t readily available. However, please don’t flush other medications. Check the medication instructions or the FDA’s Flush List if you’re unsure.

Always, always dispose of needles and syringes properly. FDA-cleared sharps containers are the preferred choice. If one isn’t available, some local guidelines allow a heavy-duty plastic household container with a tight-fitting, puncture-resistant lid like Laundry detergent containers properly labeled to warn of hazardous waste inside the container. Always check your local community guidelines for proper sharps disposal.

Our communities also have routine medication “take-back” programs through local government agencies, law enforcement, drug coalitions and pharmacies. Be on the lookout for these in your area, as they are often well advertised!

Living well with a chronic disease like Neuroendocrine Cancer requires us to be diligent about all aspects of our health, even the little things hiding in the back of the medicine cabinet.

We here at NCAN hope to provide you with information, encouragement and a supportive community. Please check out the many resources available on our website and YouTube Channel. And remember, we’re always here for you if you need us.

This information is intended for general educational purposes. Always follow the storage and disposal instructions provided with your medication and talk with your pharmacist or healthcare provider if you have questions.

By the time August rolls around, I am ready for a change. The dog days of summer in my humid Southern home state often leave me feeling physically and emotionally drained. I eagerly welcome my favorite season, fall, with open arms and a sigh of relief. After months of action-packed, fun-filled days of endless “leisure,” I am ready to return to what I enjoy most: structure, routine, and cooler temperatures.

Caring for a loved one with a chronic illness can feel much the same. It often creates a constant state of physical, emotional, and mental exhaustion. The responsibilities and stress can weigh on a caregiver like a blazing summer sun. The intensity of your hopes and concerns for someone you love can become overwhelming. Even with support, the relief may never feel complete.

When a loved one depends on you to help navigate everyday activities, a sense of numbness can slowly creep into both of your lives. Caregivers are at risk of developing physical pain and tension, losing interest in daily activities, experiencing poor sleep, and living with ongoing exhaustion.

My sister-in-law lived with multiple sclerosis and was housebound and bedridden for 21 years. Over time, our family learned that my brother’s response to our well-meaning question, “How are you doing?” would always be a polite but firm, “Fine.” He understood long before I did that only another caregiver could truly appreciate a more honest and detailed answer.

I often describe my years as the primary caregiver for our four aging parents as the hardest job I have ever loved. Looking back, I believe my brother and I were both right.

So, what can we as cancer patients do to help the people who advocate for and care for us?

We may be the ones with the diagnosis, but cancer affects our family members, friends, and caregivers as well.

Take time to check in on their emotional and physical well-being. Encourage them to make room for relaxation, not just falling asleep in a recliner. Help them schedule time for hobbies, exercise, or activities they enjoy. Encourage them to stay connected with friends. Listen carefully when they share their stories, frustrations, or daily concerns. Whenever possible, make adjustments that allow your caregiver to get the restful sleep they need, and need often.

In recent years, I have noticed that casual apologies such as “sorry” or “my bad” have become common in everyday conversations. When I hear those phrases, I sometimes wonder how much thought or sincerity is behind them. Instead of apologizing automatically, consider expressing appreciation.

For example:

“Sorry I forgot” becomes: “Thank you for reminding me.”

“Sorry I didn’t understand” becomes: “Thank you for explaining it again.”

“Sorry I overreacted” becomes: “Thank you for staying calm.”

“Sorry I was rude” becomes: “Thank you for your patience.”

“Sorry I disagreed” becomes: “Thank you for hearing me out.”

“Sorry I need help” becomes: “Could you please guide me?”

“Sorry to bother you” becomes: “I appreciate your time.”

“Sorry I kept you waiting” becomes: “Thank you for understanding.”

These small shifts in language can transform an automatic response into a genuine expression of gratitude. They remind the people who care for us that their efforts are seen, valued, and appreciated.

At NCAN, we often say that no one should face neuroendocrine cancer alone. That includes caregivers. Behind every patient is often a network of people offering rides, attending appointments, managing medications, providing encouragement, and simply being present through the ups and downs of life with cancer.

To all the caregivers in our community: we see you, we appreciate you, and we thank you. Your dedication, patience, and love make an immeasurable difference.

This August, as we look ahead to a new season, let’s remember to care for the people who care for us. A little gratitude can go a long way, and sometimes the simplest words are the most meaningful:

“Thank you for being here.”

Remember, we’re always here for you if you need us.

Today marks the beginning of my tenth year living with neuroendocrine cancer.

My diagnostic journey lasted only seven weeks, and like so many others, I was shocked and overwhelmed when I heard the words: Stage IV, incurable cancer. In late July 2016, I could not imagine what my life might look like ten years later. And yet, here I am, thankful, joyful, and living well.

Have I always trusted the process since that diagnosis? More often than not, I have.

When I realized I could not blindly accept my first general oncologist’s prognosis of three to five years, incurable and inoperable, I immediately shifted into research mode. I immersed myself in social media groups and online resources to connect with other neuroendocrine cancer patients. It did not take long to discover credible, research-based medical resources that opened my eyes to important facts, treatment advances, and the dedicated professionals and advocates who provided the hope and encouragement I needed.

Much like creating an outline for a term paper or writing a procedural manual, I learned that I needed a well-designed plan, one that would guide my actions even when results were not immediately visible.

Now, ten years later, I continue to trust the process.

Since 2016, I have worked with oncologists in three different cities. My current local oncologist is exceptionally knowledgeable about neuroendocrine cancer. My neuroendocrine specialist also serves as my surgeon. My primary care physician acts as the coordinator for all of my specialists, and thankfully, they all share the same patient portal system.

These details matter because they are an important part of my process. I have confidence in my medical team. Their expertise allows me to focus on what I can control instead of obsessing over what I cannot control or worrying about potential negative outcomes.

Over the years, I have learned to pay attention to trends in my lab work and scans rather than reacting emotionally to a single number or image that appears concerning. Living with neuroendocrine cancer has taught me that one isolated result rarely tells the whole story. The long view is often the most accurate one.

Perhaps the most difficult lesson has been learning to trust evidence and discipline more than my emotions. An advertising slogan from the 1960s often comes to mind: “Leave the driving to us.” For me, that means trusting the expertise of the professionals guiding my care while remaining an active participant in the journey.

At the same time, I pace myself and maintain an enduring curiosity about neuroendocrine cancer research and treatment developments. These habits help me stay committed to proven steps, even when the uncertainty of living with a chronic disease threatens my sense of security.

Today, my sights are set on reaching another decade of living well with neuroendocrine cancer. In July, my annual scan and recent lab work will either confirm or adjust my current oncology status of “essentially stable.” Whatever the results may be, I am confident that I will continue doing the things that have served me well and make adjustments to the process when necessary.

One of the greatest lessons I have learned over the past ten years is that trusting the process does not mean ignoring reality. It means building a foundation of knowledge, assembling a team you trust, staying engaged in your care, and moving forward one step at a time.

Here at NCAN, we want to be part of your plan for living well with neuroendocrine cancer. Through our patient conferences, online support meetings, educational videos, and hotline services, our mission is simple: helping one another navigate this journey with knowledge, hope, and support.

Together, we can continue to trust the process. We are here. (For you.)

The longer I live with my Neuroendocrine Cancer diagnosis, the clearer my desire for a Palliative Care team becomes.

Palliative Care and Hospice Care are two very different forms of support, though they are often misunderstood and mistakenly used interchangeably.

Hospice care is specifically designed for individuals nearing the end of life. Disease-directed treatments are typically stopped, and the focus shifts toward comfort, symptom management, and quality of life.

Palliative Care, however, is intended for people living with serious or chronic illnesses at any stage of their medical journey. Cancer, especially NET cancer, is a prime example of a condition that may benefit from palliative care. Unlike hospice, palliative care can occur alongside treatments intended to manage, stabilize, or even cure disease.

A Palliative Care team helps both patients and families navigate the physical, emotional, and practical challenges of chronic illness while working to improve quality of life.

That team may include a palliative care physician, nurse, or nurse practitioner who helps coordinate care, manage symptoms and medications, and provide patient education. Depending on a patient’s needs, specialists such as dietitians, nutritionists, speech therapists, physical therapists, or occupational therapists may also become part of the team. Pharmacists can assist with balancing medications while monitoring for side effects and drug interactions.

Case managers and care coordinators are also invaluable members of a palliative care team. Social workers may help patients and families navigate counseling services, community resources, insurance concerns, financial issues, or discharge planning after lengthy hospital stays. These professionals often become an important bridge between patients and the accessibility of their physicians.

The idea of a Palliative Care team serving almost as an administrative assistant for my NET cancer and multiple comorbidities is incredibly appealing.

Help managing mail-order prescriptions, coordinating scans and tests, tracking appointments, and reducing the endless time spent on hold with medical offices would dramatically improve my quality of life. Imagine having a dedicated professional available to discuss the realities of living with chronic illness and work collaboratively toward practical solutions.

More hospitals and healthcare systems are beginning to embrace the value of palliative care for chronically ill patients, but many patients still need to initiate the conversation themselves.

Unfortunately, palliative care continues to carry misconceptions because people often confuse it with hospice care. Some physicians may also hesitate to introduce the topic for fear of alarming patients.

Your medical facility likely has a Patient Advocacy Office that can help connect you with local palliative care resources. While online research can be helpful, taking the time to investigate local programs and services may provide the best results. Many insurance plans, including Medicare, offer some coverage for palliative care services, though coverage should always be part of your research.

A Palliative Care team helps manage the business of living with chronic illness so you have more time and energy to focus on the business of living.

At NCAN, we also want to be part of your NET cancer team and help you live the best life possible while living with NET cancer. Remember, We are Here. (For you.)

“Take My Breath Away”
“Every Breath You Take”
“The Air that I Breathe “

These were 3 of the songs which played through my headphones during my recent MRI scans.

Scanxiety is a relatively common buzz word in our Neuroendocrine social media sites. Is it real? Is it silly? How do I deal with it?

Scanxiety Can Be Divided Into Two Camps:
Those who are anxious about the results of the scans and those who are anxious about the actual scan itself. Both are valid concerns and both can be managed.

For those who fear the results, educating yourself about the needs for the scan and the possible outcomes can help manage anxiety. Good communication with your medical team is paramount and can lead to a confidence in their willingness and ability to guide you on your NETs journey, whatever results the scan may bring.
Trusting that they are always working in your best interest can lead to a sense of peace.

For patients who struggle with the scans themselves, the cause of angst and the solutions can be quite varied.

A CT scan for many is simply a matter of inconvenience. The dreaded Contrast drink before hand, the waiting, or the multiple images that might be needed, are typically not cause for great angst, just a seemingly major time drain.

A recent advent of several Radio-tracer scans are a source of protocol unfamiliar for many NETs patients. These uncertainties can be alleviated by a phone call to the facility and a short conversation with the nuclear medicine technicians. The scans themselves are fairly quick and typically uneventful.

MRI scans, however, can be a monumental source of anxiety for many patients. Claustrophobia is real and often times, not pretty.

If You Struggle With Claustrophobia Here Are 5 Tips That Can Help:

“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.