INSIGHTS FROM: ZOZO GREENHOLZ, RN; ANDREW E. HENDIFAR, MD; ERIC LIU, MD, FACS; MARIAH MAHOTZ, RN, BSN, OCN
Friday, February 07, 2020
Eric Liu, MD, FACS: Neuroendocrine cancer, unfortunately, is an unusual disease. The biggest problem is we don’t get much education. I remember that I didn’t. I’m not that old, and when I graduated from medical school, I had gotten 45 minutes of it in 4 years. Even in my training as a resident, I got only 1 case in all the years of surgery training I had. I think 1 of the major unmet needs for neuroendocrine, specifically, is actually just education and awareness. A lot of people don’t know. It’s very common for patients to not get diagnosed until 3 to 9 years after their symptoms develop. So just making the diagnosis is very challenging.
Now, don’t get me wrong. If someone had diarrhea, or some flushing, or some abdominal pain, and they went to their primary care physician’s office, I would not expect them to think of neuroendocrine as their very first diagnosis. The problem is, if you don’t think about the disease, you can never treat it correctly. Just a little awareness from the patient’s perspective, the physician’s perspective, or any caregiver’s perspective is extremely important.
Once we understand that neuroendocrine is here, and it’s here to stay—the numbers are definitely going up—understanding that we have to improve education, increase the number of providers, and really educate them is important.
But something else we should consider is, how do we create centers that have more experience in neuroendocrine? I always try to preach that a neuroendocrine patient should see a neuroendocrine specialist. How do we increase that? Through training, experience, and physicians working with neuroendocrine patients. That’s something that’s very important.
Of course, it’s extremely important for us to develop new therapies. It’s very exciting, because in the past few years we’ve developed new things—new diagnostics, new treatments—that have significantly helped the survival of our patients. But now we need to keep going. There are patients who have very aggressive neuroendocrine cancers. We need more treatments for that. We also need to find ways for our practitioners and providers to work together. So how do we communicate to help with care? How do we develop more multidisciplinary teams where people can come together, as was mentioned before, so we can provide all the different skills, procedures, and treatments that can help our patients? There’s a lot to be done, but I think we’re really on the right path.
Andrew E. Hendifar, MD: Treating neuroendocrine tumors in the community can be quite challenging for a number of reasons. It is difficult for a community provider to receive accurate pathologic grading and staging of these tumors in order to inform the best type of treatment. Many centers and practices don’t have access to gallium [Ga 68]-DOTATATE PET [positron emission tomography] or CT [computed tomography] imaging, and therefore the management of these diseases can be quite difficult. For that reason, I think more expert attention is needed for pathology and imaging to better understand how to accurately convey the essential information to our providers in the community, so they can improve the care of their neuroendocrine tumor patients.
One of the large unmet needs for our neuroendocrine tumor patients who receive their care in the community is multidisciplinary care in a challenging environment. Unfortunately, I think a lot of that will depend on the oncologist to seek input from his surgical colleagues, interventional radiology colleagues, and pathologists. We probably have to make pathology interpretation of neuroendocrine tumors a little more uniform from center to center and make it easier for them to convey the necessary information to their oncologists, which would include accurate description of differentiation and grading, including Ki-67.
We also need our imaging providers to be able to, when they perform a gallium [Ga 68]-DOTATATE PET or CT scan, give the kind of important information to the referring medical oncologist. Is this a patient who has enough uptake on the somatostatin scintigraphy to recommend somatostatin analogue therapy? Would it be appropriate for them to receive peptide receptor radiotherapy? These are some of the general practice approaches that need to be conveyed to everyone.
Eric Liu, MD, FACS: The 1 bit of advice I can give: If you have a new neuroendocrine patient, definitely be patient with them. Neuroendocrine is something people don’t really understand. And then the other thing to do is always partner with a neuroendocrine specialist. Find someone either in the region or even across the United States. Many neuroendocrine patients are definitely willing to travel. Sometimes you just don’t have the tools in your own little office to do the correct diagnostics or treatments. Definitely think about sending the patient off. The good thing that is they always need your help. They always need the local oncologist for treatments, for shots, for scans, for advice. And sometimes they get sick and still need a local doctor.
Think of it more like a team effort, in which you have maybe a neuroendocrine specialist who can act as a coach and kind of give advice. But most of the work is done between the local physician and the patient, and that’s really the team we need to build.