Let’s Talk About NETs 

Neuroendocrine (NET) cancer is a challenging diagnosis for patients, care partners, and medical providers alike. On NET Cancer Day, our Director of Marketing and External Affairs, Nicole Normandin Rueda, shares her family’s NET story. We are so grateful to Nicole for her candid account of her family’s experience, and for the passion with which she serves the cancer community. For information about neuroendocrine cancer organizations, please see below.  

Nicole’s Story

Throughout my life, I have seen firsthand – both personally and professionally – what true inner strength is. I walked alongside my dad through his battle with pancreatic neuroendocrine tumors and held his hand as he took his last breath. I have also stood alongside patients with rare vascular malformations as they hear news of a poor prognosis or been seated with the parents of a 5-year-old patient who was so full of life, that no one could even begin to comprehend the significance of a diagnosis like DIPG with a 0% chance of survival. I guess it’s safe to say that I have seen my fair share of illness and adversity; however, in each of these scenarios, I have also been fortunate enough to see some incredible moments of hope and encouragement. Today, November 10, 2023, World NET Cancer Day, I am here to share a little bit of my experience, and what I have learned along the way to remind all of us that no one is in this alone.  

“We cannot change the cards we are dealt, just how we play the hand” – Dr. Randy Pausch  

As many who have any experience with NET cancer know, it is often the delay in receiving a proper diagnosis that is one of the initial challenges. This was no different for my dad, taking over a year from the time he first reported symptoms to the time of his official diagnosis. In early September 2005, my dad saw a gastroenterologist in Laredo, TX after he was unable to keep water down for a week. The doctor did an endoscopy and saw what he described as “scar tissue lesions” on my dad’s stomach and decided to prescribe Nexium to lower his astronomically high gastrin levels. Fast forward to January 2006, the doctor recommended that my dad stop the Nexium to ensure the gastrin levels lowered. Within three weeks of stopping Nexium, my dad was throwing up again. Finally, after more than three months of scans, and the requirement that my dad carry medical documentation explaining his “atomic state” from all the nuclear testing, it was determined that my dad had Zollinger-Ellison Syndrome, which we were told could cause tumors. This realization created the momentum to get my dad referred to MD Anderson for treatment. He was informed he met protocol, and we made the 6-hour drive to Houston, TX for the litany of tests required before MD Anderson would provide clarity on diagnosis and treatment.  

At the time, we were looking for all the answers, and MD Anderson was able to confirm that my dad had Stage IV Neuroendocrine gastrinoma tumors with the primary site in his pancreas and metastases in the liver and lymph nodes. In hindsight, it is astonishing how little our family knew when it came to cancer treatment, language/jargon, protocols, etc. My paternal grandfather had just passed away from mouth cancer that metastasized to his brain, so it was not that we were naïve, but we just had no idea what aggressive treatment for Stage IV cancer looked like. My dad was 52 years old at the time, and he was my hero – a symbol of perseverance and strength. He was the Vice President of Operations at a manufacturing plant, he walked 18 holes of golf in 108-degree weather because he enjoyed the exercise – he thought he was invincible. He was also very stubborn – so much so that 20 years earlier, he was insistent on teaching himself Spanish and did so in a matter of months so that he did not have to rely on paid translators for his job. Initially, we all felt overwhelmed – we got the diagnosis, but we still wanted answers. There is a reason that I strongly discourage families from consulting Dr. Google –I can remember googling neuroendocrine carcinoma originating in the pancreas and only seeing information on Stage IV Pancreatic Adenocarcinoma, which was discouraging, to say the least.  

That feeling – you know the one, like you have just been sucker punched in the gut – is very familiar when I reminisce on this time in my life. Quite literally, I stopped breathing for a second, it was a moment of panic and fear, a future flashing before me without my dad in it. It happens to the best of us – the news of a cancer diagnosis is life-altering in so many ways for each person in the family. And so often, the person delivering these messages can be a little numb to the impact their words are having, these oncologists see new diagnoses all day, every day. At the time, there was such limited information available on NETs that it got to be confusing and quite frankly, disheartening. My mom tells the story of an oncologist trying to help us differentiate his diagnosis by explaining that my dad had the ‘best kind of the worst kind of cancer’. Infuriating, and not helpful. For all intents and purposes, at the time, he had pancreatic cancer. There were quite literally no resources that we could find for his NET and the pancreatic cancer resources we did find were limited at best.  

Instead, what got us through the first 2 years was hope. Despite the rollercoaster of emotions that a Stage IV cancer diagnosis is, my dad’s mindset was to focus on finding the strength to overcome the odds and keep a positive outlook. It was the attitude with which my dad, and so many others, chose to have throughout the life-changing cancer diagnosis that gave everyone in our circle a sense of strength. My dad went from feeling invincible to wanting to cherish every moment he could, he knew that cancer was now a chapter of his story, but it was not going to write his book. Don’t get me wrong, he had days where he was mad at the world, but he also had days that he was grateful for the chance to fight another day alongside his favorite people.  

“So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. “ – Steve Jobs 

As so many impacted by cancer know, the struggle to keep the faith and positivity is the difficult part. The fact that one test result can disqualify you from a potentially life-saving treatment is distressing. It was difficult to remain positive when there were medical professionals giving us information that was borderline incomprehensible. We asked his medical team if it was okay to record all the updates they were giving because while we knew the words coming out of their mouths were important, we had no idea what most of them meant. This was a game changer, and something I encourage every single patient and family member to do if their medical team allows it. If not, ask for everything in writing (either printed or via a portal). As PEN says, the best cancer care happens when you’re empowered to ask the right questions at the right time. The person who did this was my mom – she was the one making sure my dad took all his meds, ate enough protein, and asked all the questions she needed to ensure we walked out of the room feeling like we were part of the decision-making process. Having a strong care partner is invaluable – but finding a support network (if you don’t already have one) is equally as important.    

That is the thing about cancer, it takes so much away from everyone it impacts. The ability to keep faith and trust in something (whatever that may be) is incredibly difficult. There are so many situations that are just unfair – from not meeting protocols for a new treatment option to being pushed to extend life that has no quality because you do meet certain protocols. It is overwhelming to think about the infinite possibilities. What can be helpful is to focus on the things you can control and trust yourself. Cancer cannot take away the relationships with those around you. Personally, I am grateful that a Stage IV NET diagnosis was not able to take the memories I made with my dad, the priceless gifts that I keep with me every single day. I have no regrets – I carry him (and others whom I have met along the way) with me in everything that I do. My advice to others when asked how I have been able to cope with the incredible amount of loss I have experienced in my life is to make sure you stop and appreciate the moments and record the memories. There are opportunities every day to spend some one-on-one time with those around you – especially those impacted by cancer. This journey is not one that anyone can or should get through alone. Whether it is finding a support group, finding a counselor, talking with friends, or spending time with your pets (that was one of my dad’s favorites), it is so important to seek opportunities to connect with others.  

Over the next 5 years, my dad beat all the odds. He kept up with his quality of life for nearly all his remaining days – being able to attend my brother’s wedding, watching me graduate with 2 degrees, and spend LOTS of one-on-one time in the car with my mom going to/from Houston for treatments. It was not until early 2012 that we were told there were no additional treatment options, and we had to start thinking about palliative care. Up until that point, my dad had been doing well – he completed 10 rounds of 5FU chemotherapy, his lifetime limit of radiation, five surgeries, and a clinical trial. This is where my professional training as a social worker comes into play. Again, hindsight is 20/20, but at the time, since my dad looked so healthy externally, we never had in-depth conversations regarding his wishes when it came time for hospice and palliative care. My mom, thankfully, had the wherewithal to make sure my dad’s wishes were respected, along with advance directives, etc., but as a family, we did not explore palliative care options.  I don’t think he was offered palliative care until, in my opinion, it was no longer a palliative care situation. The last weeks of his life were incredibly difficult for all of us. The decisions we made, as a family, during that time were the product of painful discussions with a 59-year-old man who was in unbearable pain. He did the best he could, and we were alongside him every step of the way. He was able to take his last breaths surrounded by those that loved him the most. I have dedicated my career to ensuring other families impacted by cancer have the psychosocial support they need.   

Rare cancers, like NETs, have some incredible resources and support networks that can be transformational for people with cancer and their families. Don’t be afraid to ask for resources. Hospice and palliative care teams can also be incredibly helpful, and at times will overlap. Palliative care is meant to enhance a person’s current treatment by focusing on the quality of life for them and their family. Palliative care teams are multidisciplinary and comprised of doctors and specialists, as well as social workers, chaplains, and nutritionists who will provide as much support as needed to improve quality of life and is a fantastic opportunity for patients to be active participants in their medical treatment.  

If you got this far into this blog post, I would like to make sure you walk away with these words – Surround yourself with people who you love to help you be proactive in making decisions that impact your journey. It is critical that patients and their families are empowered to understand their situations, feel confident to ask the right questions and be an active part of the decisions that need to be made. It has been 10 years without my dad, and I would give just about anything to have him by my side today, instead, I am able to carry my dad’s legacy with me, still doing my best to make him proud. Hug your loved ones extra tight today, on World NET Cancer Day and try to remember that you are not alone. I leave you with this piece of advice from my dad, Mike Normandin, that I often turn to on especially tough days, “Stay positive. Life is about choices. Make choices that are going to make you happy…Love is the most important thing in life…”  

P.S. If you want to hear him give this advice, feel free to check out this advocacy video my parents and I made over 12 years ago or this clip from my hometown’s local evening news (apologies in advance for the poor-quality audio).

Neuroendocrine Cancer Organizations