A Venice musician who survived the cancer that killed Steve Jobs pays it forward with information, support and hope
By Andrew Dubbins
After her 2005 neuroendocrine cancer diagnosis, classical pianist Giovanna Imbesi underwent two difficult surgeries to remove the tumors in her intestines and liver. Worse even than the pain for Imbesi was the fear.
“Doctors can give you pain meds,” she recalls, “but what’s really going on is you’re wondering if you’re going to die. It’s such an intense fear.”
Neuroendocrine cancer patients usually don’t receive traditional chemotherapy, so they often don’t look like typical cancer patients. Acquaintances would tell Imbesi, “I thought you were done with that,” or “I thought that was 2005.” It created a feeling of isolation for Imbesi, compounding the fear. But during her two-year recovery from those surgeries, spent at her Venice home near Café Gratitude, Imbesi found an escape: “I couldn’t walk around, and I couldn’t do much, but I could sit at the piano.”
A classically trained pianist and keyboardist who’s composed for TV and film and toured with artists like the Greek composer Yanni, Imbesi began writing music inspired by teachers, mentors and stories of resilience. After sharing her songs with fellow patients, she discovered that music could be soothing not just for her but for anyone battling a serious illness or tragedy. In 2006, she compiled her original songs into her first album, “Short Stories: Piano Music for Healing, Meditation and Relaxation.”
Neuroendocrine tumors (NETs) — sometimes referred to as carcinoids — can form in the lungs, gastrointestinal tract, thymus, and glands. They trigger a rare form of cancer that’s difficult to diagnose. The symptoms, which include diarrhea and flushing, are often mistaken for those of more common conditions, such as irritable bowel syndrome or diabetes.
Imbesi began experiencing symptoms in 1999 and visited the emergency room six times before her 2005 diagnosis. Unlike other cancers, which can go into remission, neuroendocrine cancer is typically a chronic condition.
“We’re walking around knowing we have tumors,” says Imbesi. “It’s a very different head space to be in.”
The most well-known neuroendocrine cancer patient was Apple founder Steve Jobs, who was diagnosed with a pancreatic neuroendocrine tumor in 2003 and died eight years later of respiratory arrest related to it. His very public battle with neuroendocrine cancer helped spread awareness of the disease, but Imbesi argues that more is needed, not only among patients but also health professionals.
“Awareness can save a life,” she says. “It allows patients and doctors to spot it early.”
During her recovery, Imbesi says that one of her best decisions was to join a Glendale-based patient support group. The group went defunct after the woman leading it passed away; so in 2012, Imbesi launched a support group of her own — LACNETS, based in Venice. Each month, an expert is invited to present on diagnosis of NETs, treatment options, research, and resources. The talks are videotaped and posted on YouTube for global audiences.
Now over 1,500 patients strong, LACNETS also holds an annual Patient Education Conference (the next one is this Saturday, June 24, at City of Hope in Duarte), at which speakers discuss advances in the treatment of NETs. This year’s topics will include a new scan for NETs called NETSPOT® and a new FDA-approved drug that helps patients with the diseases symptoms.
Imbesi likes to open each conference by asking people to raise their hand if they were diagnosed in the past year, then five years ago, then 10.
“We keep going up and up,” she says. “When you get people raising their hands after 20 years, for a person who was just diagnosed, it means everything.”
For more information about LACNETS and Saturday’s annual patient education conference at City of Hope, visit lacnets.org.