Living with NET isn’t a sprint. It’s a marathon.
Every March, thousands gather to run the Los Angeles (LA) Marathon. This annual event serves as a reminder that living with neuroendocrine tumor (NET) is often compared to running a marathon rather than a sprint. While it might be obvious, let’s first talk about what this metaphor means.
Why is living with NET like running a marathon?
On the most basic level, when NET experts say this, it means that you’ve got time. In other words, contrasting a 100-meter sprint to a 26.2-mile marathon is like saying, “you have a lot more time.” This is meant as good news. Fortunately, this is a type of cancer most people can live with for years with proper care and treatment.
The two events demand entirely different pacing strategies.
A sprint is a burst of speed and power. It requires quickly ramping up the heart, lungs, and muscles and using up oxygen in an all-out effort to move as fast as you possibly can. It simply isn’t meant to be sustainable. Continuing at this high-intensity pace inevitably leads to muscle fatigue and exhaustion.
A marathon is an endurance run. It requires keeping a steady pace for a much longer duration. While the pace may be slower and less intense than that of a sprint, a marathon requires building significant physical and mental stamina in order to finish the race. A marathon isn’t about how fast you go. It takes great courage just to be in the race.
In a marathon, there are times when it may be necessary to run a bit faster such as at the start and end of the race. Similarly, NET “sprints” might happen at the time of diagnosis, significant disease progression, or before/during/after surgery or other treatments. The important thing is recognizing whether or not there is a real threat. This is where educating yourself about NET and knowing your disease helps. Having a NET expert on your team is crucial. Your NET expert(s) can tell you when it’s time to sprint.
For the most part, however, living with NET is like running a marathon. It is more about endurance than speed. Yet the tremendous stress experienced by those affected by NET often causes patients to sprint. Running a long distance at the pace of a sprint simply isn’t sustainable. It leads to burnout and exhaustion. If living with NET is like running a marathon, proper marathon training must include learning how to pace for an endurance run.
This three-part series is our “NET marathon training.” In these articles, we focus on learning to deal with the stress brought on by cancer. It is based on the work of stress scientist Dr. Sonia Lupien from the University of Montreal, the keynote speaker at the NorCal CarciNET 2019 annual patient educational conference. Her presentation can be viewed here. More on Dr. Lupien and her stress research can be found on the website, Centre for Studies on Human Stress.
THE SCIENCE OF STRESS:
Dr. Sonia Lupien compares stress to running from a 4-6 ton prehistoric mammoth. Stress is the body’s physiological response to a perceived threat. It is how the body fights for survival, just like the prehistoric human kept himself alive by running from large mammoths (1).
When the brain detects a threat, the part of the brain involved in emotional processing called the amygdala is activated. The brain tells the body, “there is DANGER!”
The body reacts by activating the hypothalamic-pituitary-adrenal (HPA) axis and releasing stress hormones including adrenaline and cortisol (2). The stress response allows the body to respond quickly, run faster, gather more strength and courage, become more focused, plan quickly, and endure longer than we thought we ever could.
As you sit in the waiting room for a doctor’s appointment, a scan, or recent lab/imaging results, you sense your pulse racing, your breathing becoming shallow and rapid, and your palms getting sweaty. Though you’re not moving your body, the stress of living with NET makes you feel like you’re running a sprint.
Now, stress itself is not a bad thing. It is the body’s natural response to danger. Even though mammoths no longer exist, our bodies still react as though they're sprinting away from one. The stress of living with NET triggers the body’s stress response and floods the body with stress hormones just as much as, if not more than, it does when running from a mammoth. Our bodies can’t tell the difference. This is because we interpret the situation as stressful.
What this means is that there is hope. Just as we have evolved so that wooly mammoths are extinct and absolute stressors are rare, we can learn to influence our perception of stress and the way we react to it. We can (and will) decrease our stress response and learn how to cope (3).
The key to affecting the stress response is
to change the body’s interpretation of the stressful situation.
In the next article, Marathon Training Part 2, we will continue the marathon training with a discussion about reprogramming your stress response. Finally, there are two more important elements of the marathon we must also highlight:
Breathing is foundational to marathon training. Your breath serves as a brake to your stress response by slowing and steadying your breathing and pulse. It also helps you tune into your body. It helps you know when you’re going at the right pace. Let your breath be your anchor. Allow your breath to circulate life-giving oxygen throughout your body and bring focus and calm to your mind and soul.
THE FINISH LINE:
While we may invest time and energy in educating ourselves, seeking second opinions, and making treatment decisions, it is also important to know why you are fighting and what you are living for. In other words, what are you are running to? Running away from something is a survival instinct. Running to something is more sustainable and powerful. Marathon runners are not running away from the start line. They are running toward the finish line.
All marathon runners need a finish line to run toward.
What is your finish line?
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS