We need to stop thinking about neuroendocrine tumor cancer and carcinoid syndrome as a “rare” form of cancer.
I am not suggesting we abandon the disease’s legal status as an orphan or rare disease. Financially, we cannot afford to do that. I am suggesting that we have to stop thinking about it that way. By thinking about it being rare, we create a raft of excuses for not pursuing it as aggressively as we do lung cancer, breast cancer, prostate cancer, cervical cancer–or any of the big name cancers. It may turn out that NET cancer is rarer than other cancers, but it does not make the suffering of its victims any less.
And I think we need to stop acting as though the word “indolent” is a positive attribute–that it means we need be in no hurry to find a cure for the disease because people can live with the disease for a long time. That slow growth makes the disease both harder to diagnose and, after a certain point, virtually impossible to cure with what we have to work with. We can delay the ending then, but we cannot stop it. Its slow rate of growth only means the patient suffers from the symptoms for a longer period of time.
I’d also like to eliminate the word “benign” from our vocabulary when it comes to tumors in general, but about NET in specific. I’ve heard “non-active” NETs called benign because they are not pumping out hormones and peptides. The truth is, we do not know enough about NET cancer to know if those non-active tumors are benign or not. In fact, there may be some evidence emerging that even when an NET appears to be doing nothing at all, it is doing something. The research on aggressive forms of prostate cancer, for example, seems to show non-active NETs spurring the growth of the prostate tumors. And NETs, active or inactive, have shown a propensity to spread from their origin points.
The problem is, we just don’t know enough. We don’t know whether the disease is rare or not, in part because we have few reliable methods of detecting it, in part because primary care physicians are unaware of its existence, and, in part, because many people who die from the disease are labeled as having died of something else entirely. NETs often messes with other organs and how they function. For example, my wife’s disease destroyed the valves in the right side of her heart. Absent the discovery of the tumors in her liver, we would have been told she died of heart disease. How many cases of idiopathic right side heart valve disease are caused by NET/CS? We just don’t know. There is an NET form of breast cancer. There is an NET form of lung cancer. Many of those deaths are labeled as breast cancer or lung cancer deaths. We don’t know how many.
But whether the disease is rare or widespread, the suffering of the individual patient is real. Their deaths are real. The impact on their families is real.
For them, there is no solace in a pink zebra. They need a cure. And they need it sooner rather than later.
