Patient-Nurse Communication Aids in Educating on Neuroendocrine Tumors

One patient’s journey with a tumor she’d never heard of before (nor did her oncologist at the time) led to the creation of the Healing Net Foundation — designed to optimize the care of patients with neuroendocrine cancer through the education and collaboration of health care providers, patients, and caregivers.

Following a breast cancer diagnosis in 2005, an incidental finding from a scan 5 years later changed Cindy Lovelace’s life forever: She was diagnosed with neuroendocrine cancer. Lovelace underwent a tumor resection and was told she was very fortunate. However, just months later, after news broke of Apple co-founder Steve Job’s passing from neuroendocrine cancer, fear came rushing back.

“I googled neuroendocrine (cancer) again. It turned out there was a specialist (Eric Liu, M.D.) in Nashville that was a colleague of my oncologist,” Lovelace said. “I was astounded, here in my own backyard, there was this doctor who knew about neuroendocrine (cancer). All I had been told was it was rare and no one knew much about it. So, when I went to see him, he was so full of knowledge.”

Under Liu’s care, Lovelace underwent what was experimental scanning at the time, the PET Gallium scan, and found two more tumors on her liver that did not appear on an MRI. “That was the difference in the contrast between the two types of scans,” she said. “I never would have known that I still had a problem.”

So, with Lovelace’s experience with cancer and her 35-year background in communications, as well as Liu’s specialization in neuroendocrine tumors and a very clear unmet need for more education, particularly in the medical community, the Healing Net Foundation was born.

At the foundations’ 2019 Summit, Oncology Nursing News spoke with Lovelace and Liu about the organization and the role nurses can play in raising awareness and educating others about a disease that is often not talked about.

Oncology Nursing News: What role do nurses play in this communication?

Lui: Nurses play a huge role, specifically for neuroendocrine (cancer), because a lot of the treatments are time-consuming. You sit there, it takes 10 minutes to put the shot in. That gives nurses time to talk to the patients. The nurse talks with patients, their guard is down, and they talk about what they are experiencing. The patients may not tell me about it, but they’ll tell their nurse about it and then he or she can tell me about it. The nurses can recognize what it means, what’s going on and then they can help the patient. Every bit of time that the patient has with a health care provider of any sort at any level is good. It all increases communication.

How does the multidisciplinary approach come in to play?

Lui: The problem with neuroendocrine cancer is that it is a very complicated disease. It is really like 90 different diseases. So, you need all types of physicians because it is impossible to hold all of that information in your brain. For me, I am pretty fortunate that I think about all of these things and it comes from my surgical training. But if you are trained in only digestion and don’t know anything about breathing, then you are going to have a hard time taking care of lung neuroendocrine tumors. So, you have to have a lot of people who can work together. Someone has to read the scans, someone has to figure out how it is affecting the patient, what kind of insurance they have. Some may specialize in medicine, surgery, or other procedures. It is just impossible for any one person to keep in their brain at one time.

What are you hoping is the key takeaway from the meeting?

Lovelace: The thing that is most important is if attendees come away with some additional knowledge — a piece of something that they didn’t know before or thought of before. By us having conversations and listening, and by seeing how working together can actually produce really great results. And hopefully they will be inspired to do more collaboration. (At ASCO three years ago), Joe Biden talked about the Cancer Moonshot. And I will never forget when he started pointing around the room and said that everyone had to come out of their silos and that “we can fix this problem if we just come out of our individual silos and work together.” And that is how I feel. If we all put our heads together, we can solve a lot of things. We can help to deliver better care for these patients and eventually research that will help ways to prevent or cure the disease. At the very least, right now, we can be focused on better care. We can and should be delivering better care.

Lui: The most important thing about the Summit by far is not what we do but the community we create. This is a very different kind of meeting. It is not like a person going up and giving a lecture. This is to create an environment for which people feel safe to talk and exchange ideas and get to know each other as people. People can speak their mind to other doctors from around the world, and that is what we want to create.