Tag Archive for: Nicole Normandin

How Do Psychological Factors Impact Diet During Cancer Treatment?

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How can diet be impacted by psychological factors during cancer treatment? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss common psychosocial factors, various impacts to diet and nutrition, and strategies to help mitigate negative impacts to patient health. 

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See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

 What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?
What Role Does Exercise Play in Cancer Treatment?

Transcript:

Lisa Hatfield:

Have you ever wondered how psychological factors could influence your dietary intake during cancer treatment? Understanding this connection is more crucial than you might think. In this segment, we’ll dive into the complex interplay between mental health and nutrition on this Patient Empowerment Network RESTORE program. 

So, Joelys, what psychological factors most commonly affect a cancer patient’s ability to maintain proper nutrition during treatment? 

Joelys Gonzalez:

There are many psychological factors here in hand, but some most important ones will be like anxiety, depression, and stress are the most common ones in cancer patients and can significantly affect their ability to maintain the proper nutrition during and after treatment. For example, anxiety can lead to reduce their appetite or cause a patient to skip a meal altogether, because they’re super anxious about their treatment and sometimes they can actually forget to get their meal of day. Depression might also make it difficult for patients to find motivation into prepping a meal themselves, or even buying a meal.

Sometimes they could, specifically if they live alone, sometimes it’s hard to just think yourself, what can I eat? What should I eat? And that can cause stress. That’s where the stress comes, whether from the diagnosis itself, or it could be financial concern or worries about a family member. That can lead to a patient to have erratic eating patterns. And sometimes they can also, they might overeat as a coping mechanism, while there are others that might lose their appetite completely and not even recognize that they have lost their appetite or if they had a meal of the day. Additionally, this can also cause cognitive changes like chemo brain. We have all heard about chemo brain, we forget, or foggy brain.

This can also affect the meal planning or prepping. This can make it very challenging as many patients can lead to unhealthy eating habits. It’s also worth noting that taste can also change during treatment, which can also be a really huge side effect that many patients go through. As we can know, previously maybe a person, a patient enjoyed certain foods. Now they might not be able to taste that food, and they might find it unappealing. And making the patient’s ability to eat well, super complicated.

And I feel like to help address these issues, I have been working with patients closely to identify these psychological barriers and creating some coping skills or some coping strategies that can make it easier for them to eat or to make some easy to prep meals more enjoyable such as small meal prepping, like, just involving your family or friends overall to make something that you used to, that you used to like, or that you used to enjoy. That can help also a patient kind of overcome that barrier by having also the emotional support that many can gain from counseling or support groups or their family members or their neighbors. It could be anyone. Also, like for example, a puppy. You could have a puppy providing you emotional support.

I am a huge fan of puppies, and just recognizing and addressing these psychological factors is very crucial in helping a patient maintain their nutrition and overall health during and after treatment. And not just patients but also the care partners. Care partners also go through those challenges, especially wanting to make sure that the patient is eating well or that the patient is getting the correct nutrition.

Lisa Hatfield:

Okay. Thank you so much. 

Lisa Hatfield:

So for both you, Nicole and Joelys. We’ll start with Nicole. first. What strategies can be employed to help cancer patients overcome psychological barriers to healthy eating, such as anxiety, depression, or changes in taste and appetite? 

Nicole Normandin Rueda, LMSW:

So piggybacking off of what Joelys just offered, I think that really utilizing your health care team and all the resources available is going to be critical. So we want to make sure there’s nutritional counseling available.

So a lot of times, for example, a lot of times getting enough protein is difficult because, I mean, if you’re not eating a whole bunch of chicken all day, I mean, it’s hard to get enough protein in all three meals. So, things like Ensure or Boost or whatever, whatever it is that your health care team recommends, not only can they recommend it, but usually there are social workers that can help you get, either coupons or discount codes or whatever, because the cost can also add up. So that’s a huge strategy, right? Utilizing your network, your health care team, to really make sure that you’re helping alleviate any of those issues that you may be having is first and foremost.

Next, I would say, if you needed it, there are cognitive behavioral therapy techniques, as well as like behavior change techniques that you can use, and you can go through with a counselor to figure out how you can change your thought process and help set goals, monitor, food journals, all these little things that for some people super helpful, other people, maybe not so much. Other people might just be like, hey, I just need to remember to eat something today. I need to be able to keep my food down in order to take my medicine. So that’s where we’re going to prioritize our efforts, right?

And then also, as far as the taste and texture thing. There are texture things that some people either can no longer handle or have never been able to handle really. And so we want to make sure that we are encouraging or offering suggestions that are helpful. But also, there are things that happen with side effects when it comes to your mouth, your salivary glands, your taste buds, all of that, your throat.

There are side effects that so many different patients with cancer experience that are not really talked about. And so we have to make sure that we are just on top of it. So we’re making sure that if you’re not eating something, if you’re not, if you don’t go near a certain food, what’s the reason there? And then we can offer suggestions if we need to. Another thing that is difficult to do is mindful eating. And what does that mean, right? Promoting like slow eating. So there are chemicals in your brain that whenever you are eating too fast, your body doesn’t understand, like it takes a while to catch up and say, oh wait, I’m full or oh you know what, this is not what I needed right now.

So we want patients to just slow down. Make sure you are listening to your hunger, like, if you don’t really think about it, sometimes you’re like, oh my goodness, it’s gone eight hours, and I haven’t had anything but an apple. That’s not going to be helpful long term.  So we want to make sure we’re having patients understand the consumption process, what it looks like, how often should I be eating, and what are the meals, what should they look like? Are berries enough, or do we need to add like a protein, some walnuts in there to eat the berries with the walnuts?

What is it that I need to do in order to make sure that I am meeting these nutritional recommendations? 

Lisa Hatfield:

Okay, thank you, Nicole 

Lisa Hatfield:

And, Joelys, do you have anything to add to that? Different strategies that can be employed by cancer patients to help overcome those barriers to eating healthy? 

Joelys Gonzalez:

Honestly, I want to piggyback on what Nicole said. She mentioned most of the strategies that I can possibly think of at the moment, but making sure you work closely with your healthcare team. It’s very important. That could be either the dietitian or your mental health professional making sure that you are having a unique personal plan for you. That’s very important, not just for the nutritional needs of a patient but also for the psychological needs.

For example, like I mentioned before, anxiety and depression, if you’re feeling anxiety and depression, psychological support might be like counseling or therapy can be super beneficial, because they can help you manage those emotions and find motivation and for eating again. Also, for example, you mentioned the changes of taste, you can also continue to try small spices or different spices or different texture until you’re able to get to that comfortable space that you’re looking for. And not just trying to give up at the first hand, I know it can be tough.

t is tough to be focusing on whether your mental health or your nutrition, but also being able to focus on having to celebrate that little small step. It’s very important to continue motivating yourself. And also, I encourage having small meals. Don’t think about it as a full meal perspective when you’re looking at your nutrition, because starting small is better than starting big and being disappointed and having that disappointment or overwhelming feeling.

Lisa Hatfield:

You heard it here directly from our experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

What Role Does Exercise Play in Cancer Treatment?

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How can exercise benefit cancer patients? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss the benefits of exercise to cancer health and recovery, recommended exercise types, and tips for patient support and maintaining some level of activity. 

Download Resource Guide

See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

 What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

 How Do Psychological Factors Impact Diet During Cancer Treatment?

How Do Psychological Factors Impact Diet During Cancer Treatment?

Transcript:

Lisa Hatfield:

How can staying active during cancer treatment benefit your overall health and recovery? In this Patient Empowerment Network RESTORE program, we’ll explore the vital role of exercise in cancer care and uncover how incorporating physical activity into your treatment plan may enhance your well-being and support a better outcome. 

Joelys, how can physical activity be safely incorporated into a cancer treatment plan? And what types of exercises are most beneficial for patients? 

Joelys Gonzalez:

Well, incorporating physical activity into a cancer treatment plan requires more of a personalized approach, considering the type of cancer or the treatment being received or the overall health. I often start this discussion with patients by letting them know the importance of exercising during and after treatment, explaining how it can help manage side effects such as fatigue, stress, and depression. I usually recommend starting with low impact activities such as swimming, walking, or gentle yoga, as long as, of course, the patient is able to move around, whatever you’re capable of, which can be just adjusted based on the patient’s energy levels and how they’re feeling on day by day. Of course, if they’re feeling low, they can start doing small activities, light activities, such as moving your fingers or moving your head around. 

I also stress the importance of listening to your body, making sure you know how your body works, and making sure that you’re not overstressing your body. It’s very important. Resting as much as needed. It’s very important to be able to stay active. To ensure safety, I encourage them to check in regularly with their healthcare team just to make sure that they are having a tailored, a personalized plan, a personalized exercise plan with them. That could be involving physical therapists or their dietician to make sure that they have a unique plan. And by making physical activity as flexible as possible and adaptable to their part of their daily routine, patients can enjoy its benefits without feeling overwhelmed and alone.

Lisa Hatfield:

Thank you for that. And I really appreciate your comments. And I know Nicole and I have talked before, even small movements like moving your fingers and your toes or any movement is better than no movement, because sometimes we are just flat out too exhausted or in too much pain to do much more. So I appreciate you saying that for patients that you can do any little movement and that’s beneficial. So thank you. And, Joelys, what are the potential benefits of maintaining an active lifestyle during cancer treatment, particularly regarding treatment outcomes and overall well-being? 

Joelys Gonzalez:

Maintaining an active lifestyle during cancer treatment can have some profound effects on both treatment outcomes and the patient’s overall well-being. And when I mentioned that physically, physically staying active helps fight the treatment-related side effects, such as fatigue or muscle loss or weight changes. It could also support the cardiovascular health, which is very important since most cancer treatments can affect your heart. For instance, if you do such light exercise like walking or cycling, that can help you improve your blood circulation, helping you reduce the risk of blood clots or other complications from the treatment.

And this can also help you mentally. Maintaining that regular physical activity can significantly reduce your stress and improve your mood, especially when it comes to anxiety and depression, which are the most common among patients living with cancer. I’ve seen patients who incorporate daily movements into their routine, which has made them stronger than they have been before in the sense of control over their overall health, which boosts their confidence and their resilience during their cancer treatment.

Additionally, exercise has been shown to improve sleep, which is often disturbed during their treatment. And from a social work perspective, engaging in group activities or even walking with a friend or a family member can reduce your feelings of isolation, the feelings of being alone, and it can actually help you in building that support network that you need through your cancer journey, which is very very important. I really reiterate that having someone next to you not just to talk and just to make small exercise that can help you a lot during your cancer treatment, and the overall maintaining an active lifestyle helps patients manage their treatment better and contribute to a higher quality of life during and after cancer treatment.

Lisa Hatfield:

Nicole, how can healthcare providers effectively support and motivate cancer patients to stay active despite the challenges posed by their treatment? 

Nicole Normandin Rueda, LMSW:

Great question. So healthcare providers are often the first line of defense, right? And so they have this unique opportunity to really invest in getting to know their patients, which will then in turn…it will be the strategy that they use whenever it comes to tailoring the actual like exercise plan, for each patient. What that means really is that we get to know the patient’s needs, their abilities, knowing a little bit more about their diagnosis or their treatment, the side effects, or potential barriers. The more, the better you can tailor the actual personalized plan for each patient.

That also means not just the oncology team, but all the ancillary services. So your physical therapist, your exercise specialists, there are movement specialists. I mean, there’s a whole, a plethora of resources that can be brought in to help make sure that a patient…their treatment stage, their overall health, any secondary or other diagnoses that they may be managing as well as their just physical capabilities are all things that we want to make sure are very…we’re thinking about those at all times. We want to make sure whatever it is that we’re asking them to do is safe and achievable and aligned with their needs.

The encouragement from your oncology team and hearing that you know what you’re doing great, your small steps are baby steps, but they are steps and we are proud of that. Kind of that affirmation is huge. The next thing I would say would be setting the realistic goals and being on top of the potential barriers. So we all know how great it feels to check something off a box or cross something off a list, right? So we want to give patients that sense of pride and the sense that they are able to do whatever it is that we’re asking them to do, even if it’s very small and manageable.

Our goal is to help alleviate any potential future issues or current issues, secondary to their diagnosis. So if that means it’s fatigue, if it’s pain, if it’s the circulation, all of these things that we want to alleviate or inhibit from happening or getting worse, that’s important that patients know why we’re asking them to do something and setting the goals that are small enough and achievable that they can feel that sense of accomplishment is a big deal. Again, I mean, I can’t say this enough, I want every patient to know they are not alone. There are fantastic resources online to get, even if it’s stretching exercises.

I mean, there are things that are tailored to people with cancer that are absolutely incredible and free, that patients should be able to have the support that they need. Not just emotionally, but also physically, if that’s in-person or virtual, there are resources available that can help get whatever it is that patients need under their belt and so that they have the tools they need to go and accomplish whatever it is that they are being asked to accomplish. And that gives them that sense of pride that also makes it usually a success story, right? At least for that small piece of their treatment, they can say, I was able to do what it is that you asked me to do. That’s great.

And healthcare providers, like I said, are the first line of defense. They’re the ones that are checking in and asking the questions and so making sure that we’re always asking, but also listening to what it is that patients are saying. So if they’re saying, no, I didn’t really get around much today. Maybe we need to tailor what it is that your homework is going to be for the next week or whatever, to make sure that you are getting what it is that you need from us. 

Lisa Hatfield:

Okay. Thank you. And I appreciate that you talked about even celebrating the smaller, what seems to be smaller accomplishments. Like, sometimes if you can walk even five feet a day, you’re trying to walk again, even that, Yay, that’s exciting. Instead of thinking, well, before I used to be able to walk a half a mile or whatever. I think celebrating those small, those smaller steps are just as important. So thank you for bringing that up. It does give patients a sense of pride. You’re right.

Nicole Normandin Rueda, LMSW:

Absolutely.

Lisa Hatfield:

Well, you heard it here directly from the experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

Nicole Normandin: Why Is It Important for You to Empower Patients?

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Why is it important to empower patients? PEN Communication Director Nicole Normandin Rueda, LMSW discusses her approach to patient empowerment and support along with her passion as a social worker in patient care.

 

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

 Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

 Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Transcript:

Nicole Normandin:

I feel as though the job of a social worker is to fill the gaps as much as possible. Usually that means I am providing information and resources that maybe, is a new resource or nobody’s really talked to this patient about the availability before. Sometimes that means I am anticipating potential issues, and I’m trying to be on top of it. A good example of that is if I know there’s a patient that is really self-conscious about losing their hair, for example, asking their care partner, hey, you might want to get a lint roller. And, if you notice that there’s, hair falling, you can use that to pick it before it causes more stress or before it makes the patient have a little bit of a freakout because of the amount of hair that’s left behind. But at the end of the day, what I’m trying to do and what I always want to do is give patients and their families the feeling of community. I want them to know at the end of the day, you are not alone. 

The day you get diagnosed, it changes your life, and it changes all of your family’s life forever, regardless of what the outcome is. And so I want to be as much of a resource to patients and their families as I can. And the best way that I can do that is, forming relationships, asking questions, being there whenever they need, or maybe when they don’t need me, right? Sometimes I just, hey, how are you? And those are usually the times that I get more information out of them, as opposed to when it’s like a required visit or call. Just letting patients know that I’m here, and I’m doing this because I want to.

And it’s not that it’s a job, it’s because it’s a passion. Sharing evidence-based resources, organizations like Patient Empowerment Network, there are so many resources that patients, they’re so grateful to know or hear from somebody that is just able to give them just a couple tools in their tool belt that maybe they forgot about, or they didn’t even know that this resource was available. I do this because I want to be able to provide as many resources, as much of a relief to patients and their families as I possibly can. And at the end of the day, it’s why I do what I do.It’s why I’m a social worker. It’s why I continue to work with cancer patients and their families. And I will continue doing that for the foreseeable future.

Let’s Talk About NETs 

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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