It has always been an important recommendation that people with neuroendocrine and carcinoid tumors see a specialist, but it is also critical to have a local medical team that is knowledgeable about the nuances of NET care. Without the local physicians, your care will be incomplete. Let's think through this together.
Let's say you get your diagnosis, you get some kind of prognosis/plan from your local physicians who do not see NETs everyday. Then you get on an airplane or drive long distance to see a NET specialist who either supports or modifies that information. If you're lucky and the NET specialist lives in your hometown, then things are much easier. But remember, there's a lot to your medical care beyond NET cancer. Even in the same town you want to be sure everyone is on the same page.
For many folks, getting the hormone shot every month requires seeing the doctor. Most are on Sandostatin and that requires a doctor's visit. But if the doctor's office isn't interested in NETs, will the technique of giving the shot be a priority? How about follow-up? Many patients can't afford to travel all the time to see the specialist and get the scans done at home. Is the imaging done correctly? Is it done at the right frequency?
Now, let's consider all the "other stuff". If we are successful, you will live a long time with a good quality of life. But that means you can still get heart disease, other cancers, autoimmune stuff, infections, etc., etc.. If you get a cough, is that automatically caused by the NET? If you get a stomach bug, is that because of the NET? If you need a flu shot, will the NET cause a problem? Much of it is just comfort and familiarity with the disease. Many will still need screening mammograms, colonoscopy, smoking cessation, immunizations, and general health support. But if things are a little strange, then it MIGHT BE THE NET ACTING UP.
What if you have something emergent? You can't get to the NET specialist in time if it is an emergency, so the local support team is critical. Should the NET specialist be informed and support you from a distance, definitely. But having confidence in your local medical team and hospital is critical too. Maybe you do need to be transferred - that's a decision that should be made between the specialists and the local team. Ongoing dialogue between them is critical so things stay smooth.
Therefore, having a good local oncologist who can help recognize strange behavior in the tumor, a primary care provider who can keep an eye on the usual health maintenance, and other local specialists who can help out when needed are critical. Luckily, in my experience most health care practitioners are open-minded and care about your well being, but there is always more to learn.
Now you see why the HEALING NET FOUNDATION is working to slowly build a team of local physicians with some experience and interest in NETs across the country. Recognize your physician through this month's campaign. Talk to her/him about learning more about NETs. It's only through teamwork that we'll keep NETs under control.
Eric Liu, M.D. Neuroendocrine Specialist