More awareness needed for NET tumors
Often treated with a lack of urgency, these types of cancers are misunderstood
Today is neuroendocrine tumor (NET) Cancer Awareness Day. Created by the International Neuroendocrine Cancer Alliance (INCA), NET Cancer Awareness Day seeks to get the word out about NET cancer, about available treatment options, and about the quality of care that is available to those diagnosed with a NET tumor.
NET Cancer Awareness Day was created because of patients like my sister Marge. It was 30 years ago when Marge first noticed her symptoms, which were primarily abdominal pain and vomiting. At first, the symptoms were so random that she wrote them off as a simple stomach upset. But they soon became a regular occurrence.
What followed was a seven-year odyssey to find the root cause of her symptoms. After repeatedly being told to lose weight and take an acid reducer, Marge was no further along in her quest to get a diagnosis. As her symptoms worsened, family and friends became increasingly concerned. At their insistence, Marge reluctantly agreed to see another doctor.
But unlike the others, this one listened to her symptoms and instead of prescribing another acid reducer, she ran tests; one which revealed a mass near her pancreas.
Marge was quickly referred to another doctor, a surgeon at a top hospital in Chicago. Amiable, he didn’t seem to take her concerns seriously, telling her “if you’ve had it this long and you’re still alive, it’s obviously not malignant” in a cheerful tone as he scheduled her surgery.
He was wrong. The lab could not identify the tumor properties adequately, and the surgeon stopped the surgery. Marge left the hospital four days later, with her tumor intact and without a definitive diagnosis. It took an additional year and a dangerous drop in her potassium levels to finally receive an accurate diagnosis of a pancreatic carcinoid tumor, better known now as a pancreatic NET. All told, it took eight years from symptom onset to receive a correct diagnosis.
What exactly is a NET? NET tumors typically arise in the gastrointestinal tract but can occur just about anywhere. Because of their relatively slow-growing properties, they were originally coined carcinoid tumors, which means cancer-like. But make no mistake about it, NET tumors are cancerous, wreaking havoc on a patient’s endocrine system by producing excessive amounts of hormones, depending on the type of tumor involved.
Historically, confusion surrounds these tumors, with physicians disagreeing on the level of everything from danger posed by NETs to treatment options. Even today, a lack of urgency is often found when dealing with NETs, as so many health care professionals work off of the disproved notion that carcinoid/NET’s are not cancerous and, therefore, not dangerous.
Treatment options have changed. Twenty years ago, Octreotide was the first line of treatment, and for many, like Marge, the last line of treatment as well. But today’s NET patients are given many options when undergoing treatment, resulting in a better quality of life and a longer life span. But NETs still kill; both Apple Founder Steve Jobs and E.T. screenwriter Melissa Matheson died from NETS, as do many others, like Marge, who passed away in 2004.
As we all work to create awareness, it’s important to know the symptoms of NETs which include abdominal pain, flushing, diarrhea, wheezing, chronic cough, bloating, heartburn and weight changes — common symptoms that are often attributed to other conditions, delaying a proper diagnosis. Early diagnosis can play a tremendous role in treatment success. But NET tumors are seldom caught early, as many times a NET diagnosis is not even considered when searching for answers. Some physicians refuse to test for NETs, citing their rarity. Unfortunately, NETs are really not that rare, and the number of cases diagnosed continues to rise. Be sure to visit the INCA website, incalliance.org, for more information. Along with INCA, other organizations such as the Carcinoid Cancer Foundation, carcinoid.org, and the Healing NET Foundation, thehealingnet. org, offer a tremendous amount of information about these tumors as well as options for care. And the Neuroendocrine Research Foundation, netrf.org, has dedicated itself to finding a cure for NET cancer, offering monetary support in the form of grants to physicians and researchers to support their search for a cure.
In the end, NET Awareness Day is about so many things. It’s about education, it’s about awareness, and it’s about making sure that you and your loved ones are provided with the resources needed if a NET diagnosis is received. Take the time to learn about NETs. It just might save a life.