Q&A with Rachel C. Miller
Registered Dietitian Consultant at University of Kentucky Markey Cancer Center
After a neuroendocrine tumor (NET) diagnosis, many patients wonder what changes need to be made to their diet or if there is one food that is suitable for all NET patients. Nutrition can play an important role in managing symptoms and getting back to living your life, but it can be difficult to find the right diet. We spoke with Rachel C. Miller, Registered Dietitian Consultant at University of Kentucky Markey Cancer Center to answer your questions and share her insights into nutrition for NETs patients.
To start off, what you do for a living and what’s a typical day in the life?
I’ve always been interested in the science of food and nutrition. Eating is such an inherent part of our lives (and who doesn’t love food?). I’ve been able to combine my passion for health and wellness with the scientific aspect of nutrition. The more I learned about it, the more I wanted to follow it as a career to help others.
I’m currently an outpatient dietitian consultant at the Markey Cancer Center, where I work with oncology patients across the board. Because there are oncologists that specialize in neuroendocrine tumors at our center, a lot of the patients I see have this disease. Cancer is complex, but NETs are especially difficult to navigate because a patient’s diet and nutritional needs are directly impacted by the disease and its symptoms.
I see patients at all points during the cancer treatment process: before, during and after. No two days are the same, and I go where the need is greatest. One minute, I could be consulting with patients undergoing chemo or radiation, and the next, I’m speaking with a patient on the phone for a follow-up consultation. I’ll see any and every patient that needs our help and work closely with patients to ensure their nutritional needs are being met – especially NET patients. In my role, it’s challenging to find something that works for each individual case, but when you can give someone the peace of mind that they can enjoy a meal and improve their health, it’s all worth it.
What do you recommend for neuroendocrine tumor (NET) patients experiencing a variety of symptoms?
For NET patients, there is not one single treatment or solution. Everyone is different and recommendations are tailored based on the individual’s history and current medical status.
Because NETs begin in the hormone producing cells of the body and cause symptoms of flushing and diarrhea, patients can have trouble tolerating certain foods. A specific food can help one area, but might trigger another system, so it’s a complex process to find the right balance. With many patients, symptoms can create a snowball-like effect. When patients have diarrhea or feel like they can’t eat, this leads to eating less to try to stop these symptoms. Patients will then experience weight loss and less energy. It becomes more difficult for patients who have experienced advanced disease or have had surgery.
When I meet with a patient, I try to get the best picture of medical history and what they’re currently eating. Many times, we decide to eliminate foods that have a high amine content. Amines are chemical compounds that can trigger neuroendocrine tumors to secrete substances that cause flushing or diarrhea. Amines can be naturally occurring in foods, including fruits, vegetables, aged foods (cheese), or other proteins. While sometimes these foods can trigger symptoms, not everyone is sensitive to them. A lot of times we discover that patients can have certain types of food, but have avoided them in the past because they’ve been afraid of a reaction. Enterade, an amino acid and electrolyte medical beverage, has been a great addition to patients’ regimens and helped control diarrhea and just feel better. It’s a great supplement to what we’re already doing nutrition-wise for the patient.
Can you share any positive experiences you’ve encountered with patients?
I’m happy to say I’ve seen many success stories! I’ve seen NET patients regain control of their life again and return to the things they enjoy after using enterade. Some patients have gone from using the bathroom 10 times a day to only 3 – which is a huge impact on their lives. One patient is able to drink one bottle of enterade at night, and can wake up the next day and have her morning coffee stress-free. Individuals can go out to eat at a restaurant without immediately scoping out the building for a bathroom.
Many patients are treated with a somatostatin analogue – which can be a monthly injection to treat NETs or carcinoid cancer. Around the time of injection, a patient’s diarrhea can become worse for a week or so. Patients who have used enterade during that specific time helped to reduce the frequency and urgency. By using enterade, one patient was able to play in her softball game after she received her injection!
One of the great things about this beverage is that it can be tailored to an individual’s needs and is not a prescription. Some just drink enterade when they have more symptoms, or take it once a day. It not only replenishes you, but improves the way your body functions and enhances quality of life. There is a lot of life to live. Some of the small things we take for granted, we can change and improve for others.
Are there foods that NET patients should typically stay away from?
I don’t tell patients to stay away from one type of food right away. Just because an avocado or banana triggers a bad reaction in one person, it doesn’t mean the next person will experience the same thing. Patients sometimes restrict too much from their diet from reading generalized lists on nutrition. The diarrhea that NET patients experience is different and more complicated than other instances of diarrhea, so it really requires a full review of a patient’s history and discussion of what has or hasn’t worked in the past.
Are there any common misconceptions or myths that you want to dispel?
There is so much information out there, so it’s hard for patients to weed through everything and determine what is actually backed up by scientific evidence. A lot of times, patients receive anecdotal stories about what has worked for other people. Friends and family will share information because they want to help. While the intention is in a good place, it doesn’t mean that it will have the same positive effect on you. Talk to your healthcare team to determine what’s best for you and make the best – and informed – decision.
We want patients to be healthy, but also enjoy their food. When there are too many restrictions in place, it limits that. I don’t want people to be afraid to eat. I don’t believe in one food that all NET patients should stay away from because everyone is different. When something is on a “no” list, but it doesn’t bother you and is healthy, I say let’s try it. For those who want to enjoy a dessert once in a while, that’s OK too. My goal is to help control symptoms by working on your diet and finding the right balance. By adding enterade in addition to necessary dietary regimens, we can help improve digestion and hopefully help you to get back to living your life.
Any other tips for people after a NET diagnosis?
I encourage patients to try different things while working with their nutritionist or healthcare professional. While it might be exhausting at first, we need to find what works. There may be some trial and error in the beginning, but stay with it until we find the right solution for you based on your needs. It’s exhausting for NET patients to have to worry about food and what they’re eating. That’s where I come in to do my job and alleviate this one aspect of their lives. There is help, there is hope.
This post was originally published on netcancerawarenessblog.org