Where do I Go for Treatment?
A recent European study found that patients who were seen by a “center of excellence” for NETs fared better than those who saw only a local doctor. There is a current similar study pending in the US. Also, many of the large cancer centers known for dealing with more common cancers are not that well versed on Carcinoid/NETs. For the most part, there is not enough money, or fame, associated with these “rare” cancers and they do not put that much effort into them.
Beware of places that call themselves “experts”. Many doctors are simply “faking it”. Doctors are trained in medical school (and sometimes beaten) to know that they can take care of any situation. They have to. In a crisis, they have to have the confidence to move forward and not freeze.
When choosing an expert, do not let their listed specialty sway you. Many doctors list one specialty, but wind up in a different life direction and become proficient at the new specialty.
The World Health Organization (WHO) has advocated the establishment of centers of excellence for NETs. Right now there are a half dozen or so true experts in this disease in the US. How do we define an expert…someone who is working with NETs full time, has been for quite a while, wants to be doing just that, is staying current on the latest theories and practices for this disease. Fortunately, while that does not seem like many, there are also several “rising stars” who have accepted the challenge of a confusing disease and the lack of financial rewards.
What will an expert do for you? First of all, an expert, while it may seem costly, has a much better chance of getting the right treatment plan on the first try. That saves money (co pays on useless treatments & visits), time (all those visits add up fast), and your body (the wrong treatment can harm you) in the long run. Even doing treatments in the wrong order can preclude you from some future treatments.
Any of the true experts will evaluate your case, and then send you home for your local medical team to administer. Another advantage is that once you see the expert, you have him/her as part of your medical team, available for consultations and questions from you and your medical team.
You will also find the need for a long list of specialists, called a multi-disciplinary team, to aid in your care along the way. From cardiologists, radiologists, pulmonologists, anesthesiologists, oncologists, endocrinologists, surgeons, to nutrition guidance and others become part of your team. They should all work and play well together.
Selecting a doctor…keep in mind, you probably are not going to marry him/her. Being personable is not good enough. They have to know what they are doing, be willing to listen, be willing to communicate and be able to understand. One trick to watch for, when a doctor does not want to take the time, know the answer, or be bothered, it seems the answers become more medical terminology heavy to simply baffle you into submission.
They are the words we would all want to hear, but “Go home, everything is fine” can be the worst misconception yet. We have many patients who have been told just that, only to find that the cancer is still present, still doing damage, and still growing. By the time they seek help again, it may be too late to be effective. Going home is fine, just be sure to properly monitor your cancer for a long time (common cancers are usually 5 years, for NETs there has been no set time, as it has been found 20 years later in some cases).
Here in New Jersey, we are working up a list of doctors who we like.