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The Healing Net Foundation gathers patients, caregivers and health care providers to collaborate in raising awareness and educating the medical community about an underserved disease: 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 five 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, CURE spoke with Lovelace and Liu about the organization, its hopes to educate physicians about the disease that is so rarely talked about, and how patients, caregivers and the multidisciplinary approach can help make this happen.
CURE: 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 “ee 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.
Why is patient-physician communication so important with this disease?
Lui: Neuroendocrine (cancer) is kind of a different disease all together. So, when you have a patient who doesn’t know anything about it and sometimes talking to a doctor who doesn’t know anything about it, there is a loss of communication. They don’t even know what to talk about. What is the conversation?
So, by developing means for physicians and patients to know what they are supposed to be saying to each other, know what they are asking for, then you can really be in that dialogue. It is not until you have that dialogue that the physician understands what the patient is going through, or really begin to heal that person. And that is the important thing. It should be an important part of every patient-physician exchange, but particularly neuroendocrine because no one really knows how to speak the language yet.
What is your biggest piece of advice for an individual diagnosed with a neuroendocrine tumor?
Lovelace: You have to be careful what you search for on the internet. Try to find organizations that are going to have a lot of good, basic information, that are not trying to scare you or sell you some product — one that you see the same statistics over and over so that you know they are true. You have to do a little bit of research, a little bit of digging to educate yourself. And don’t be afraid to question your doctor about it. If your doctor really doesn’t know or have the answers, they either need to be willing to find those answers and find an expert they can collaborate with, or you need to find a new doctor.
Lui: The most important thing is not to freak out because that is the first thing that everyone does. What you have to do is, certainly visit with your doctor and get all of the information you can, and then very thoughtfully and methodically start to do your own research. The one and probably most important thing is to go see a neuroendocrine specialist because he or she can put you on the right path. They can educate you and tell you about your disease and tell you what you’re in for, and then hopefully put you on the right treatment path and put you in a place where you’ll begin the healing process.