As I mentioned in a previous Cancer Talk blog post, neuroendocrine (NET) tumors are thought of as the zebras of the cancer world. We refer to them as such because they are rare and have symptoms that are common in other medical ailments. As a result, physicians sometimes overlook NET cancers when initially diagnosing patients.
Symptoms may include abdominal pain, diarrhea or wheezing. Sometimes, patients are asymptomatic and the tumor is found incidentally. In fact, most patients are able to live with this disease for a number of years, sometimes without even knowing it.
When we hear about lung, kidney or stomach cancer, we have a general idea of where those cancers are located and what they affect. Not so with NET tumors — they can originate anywhere in the body, often adding to an already difficult diagnosis process.
Because patients can live for years with neuroendocrine cancer, they require three special needs to ensure the highest quality of life possible:
- Meeting fellow patients and survivors. Networking is very important for people with neuroendocrine cancer. Patients who share this disease have similar experiences and are better able to relate to one another. It’s comforting to have a conversation with fellow patients who were initially misdiagnosed and are undergoing similar treatment.
- Eating the right foods. Many foods can actually be trigger foods for NET patients and cause them to feel worse. Sometimes patients think it’s a food intolerance, only to discover that there is something in food that exacerbates their symptoms. Special needs and dietary plans are available to help NET patients suffering from food intolerance.
- Having a firm understanding of their disease. Because neuroendocrine and carcinoid cancer is so rare, patients may head into treatment without proper knowledge of what they are facing. The best way to learn is by staying informed. Patients should ask questions to their team of doctors and nurses. The team approach at Roswell Park is vital in helping patients understand all of their options depending on their specific case.
Roswell Park is hosting its second annual NET patient regional meeting, Living with Neuroendocrine Cancer, on October 18. This conference is a wonderful opportunity for patients and caregivers to connect and share their experiences. Presenters, including NET survivor, Kari Brendtro, will address fellow survivors and explain what it is like to truly live with neuroendocrine cancer.
In the above video, I introduce you to NET survivor, Mary, who experienced first-hand just how difficult these tumors are to diagnose. Drawing upon her own experience, Mary also shares the benefits of a team-based approach when it comes to treating neuroendocrine and carcinoid cancer.