(BPT) – Giovanna was a successful composer and pianist playing alongside some of the biggest names in the music industry when she experienced bouts of abdominal pain so intense she made repeated visits to the emergency room (ER). Over the next several years, Giovanna found herself in the ER at least six times, always with the same pain. She wanted answers.
“The doctors thought it was stress, or irritable bowel syndrome, and when they couldn’t find a cause for the pain, they said, ‘you’re fine, it’s just one of those things’ – and I wanted to believe them, so I did,” says Giovanna.
But after six years of these inexplicable episodes, a physician finally ordered an abdominal scan, and it became clear that Giovanna wasn’t fine. Giovanna had cancer.
“It was a relief to finally have a diagnosis, and then it hit me that it’s cancer,” Giovanna recalls. “As I began to learn about my cancer — a neuroendocrine tumor (NET) — I realized that to survive, I had to let go of my preconceived notions of what I thought cancer was.”
Confusing and debilitating symptoms
Neuroendocrine tumors develop in cells that make hormones, which control a variety of functions, and can develop in the gastrointestinal tract, including the stomach, pancreas, intestines, colon and rectum. Approximately 12,000 people are diagnosed with NETs each year, according to the Neuroendocrine Tumor Research Foundation.
Although slow-growing, NETs are usually discovered after metastasizing, or spreading, to other organs like the liver and begin altering hormone production, which triggers a rare disease called carcinoid syndrome.
While carcinoid syndrome affects everyone differently, it redefines the meaning of “normal” for each person. Uncontrolled, disruptive symptoms such as urgency to go to the bathroom and extreme, painful, cramping affects patients’ ability to live their everyday lives. Social settings can also be difficult and restrictive for patients given the discomfort and embarrassment associated with symptoms of carcinoid syndrome.
Giovanna says the condition can be life-altering and she is one of the few who only experienced intermittent abdominal pain. “I’ve talked to many NET patients who say the symptoms of carcinoid syndrome are so unbearable they are treating the syndrome as much as the cancer,” she says.
But, many people with carcinoid syndrome have frequent and debilitating diarrhea, facial flushing, fatigue and, over time, heart valve damage.
Living with NETs and carcinoid syndrome
There is currently no cure for NETs, but therapies used to treat other types of cancers can help shrink or slow tumor growth, which can also help reduce carcinoid syndrome symptoms.
The number of NETs diagnosed has been increasing for many years, according to the American Cancer Society. However, there are only a handful of centers in the United States that specialize in treating NETs and carcinoid syndrome. Even when carcinoid syndrome has been diagnosed, living with the condition can still be difficult.
“Be an advocate for yourself. If you aren’t getting the information you need, ask for it, or find someone who can help you ask for it,” advises Giovanna.
To cope with her diagnosis, Giovanna started a Los Angeles-based support network called LACNETS, which is dedicated to helping others understand their diagnosis, review treatment options and provide a place where people can share their hopes and fears. LACNETS is EARS: Education, Awareness, Resources and Support. While the group is based in Los Angeles, LACNETS offers resources for NET patients across the United States.
Giovanna has also found comfort and inspiration by focusing her composing on healing music to help others.
“This type of cancer is a long haul. You have to settle in for a marathon,” she says. “For me, composing and performing music is healing, empowering and re-energizing, and I want to share that experience.”
NET and carcinoid syndrome treatment is complex, but new treatment options are available. Talk to your doctor to find out more. Visit www.aboutcarcinoid.com for more information about carcinoid syndrome and to view results from the Carcinoid Impact Survey. To learn more about LACNETS, visit www.lacnets.org. To hear Giovanna’s original music, visit https://soundcloud.com/giovanna-joyce-imbesi/sets/short-stories.