NET has been the Rodney Dangerfield of cancers–“It don’t get no respect.”
But that seems to be changing–at least a little bit. After Steve Jobs’ death earlier this month it seemed like every newspaper and TV station in the country was determined to call Jobs’ illness pancreatic cancer. Even the head of one of the major pancreatic cancer foundations was quick to jump on the bandwagon. And I can’t blame him: Jobs’ cancer being labelled as pancreatic cancer was probably good for the people raising money for that dread disease.
But pancreatic cancer and an NET forming in the pancreas are, as I have said before, two very different animals.
The major media have begun to go back and correct themselves in recent days. The Boston Herald, for example, ran a piece quoting both someone from Dana-Farber and the Caring for Carcinoid Foundation about the difference between the two. 60 Minutes did a good job this weekend in making the distinction when they interviewed Jobs’ biographer.
But they still do some things that are bothersome. If I read one more time about NET being a good kind of cancer to get or how its slow growth rate is a good thing I may lose my mind.
I suppose basal cell skin cancer is a good cancer to get. Treatment is pretty straight-forward at this point–and it is difficult to die from it. But other than that, I can’t think of a cancer that is even remotely a “good one to get.” And NET is absolutely NOT a good one to get. Yes, you can live a long time with it–but the quality of that life may not be something you’d like to invite into your existence. I can’t tell you the number of times Jane curled up in a ball fighting the painful gas and bloating the disease produced in her on a regular basis for the last 30 years. Nor was her constant insomnia a pleasant experience for her. And the constant flushing and hot flashes from her late 30s on were not something anyone would want to endure. And let’s not forget the anxiety attacks (see managing anxiety attacks), the fading of people’s voices, the frequent bouts of diarrhea, etc.
And never mind the things caused by the heart disease that was triggered by the tumors in her liver over the last eight months of her life.
Another reason this is not a good cancer to get is the difficulty in diagnosing it. The average person who is diagnosed with the disease goes through three wrong diagnoses over an average of seven years before someone figures out what it is–if they figure it out at all.
Assuming you do get a correct diagnosis, this is still not a good cancer to get because–unless you catch it early–and almost no one ever does–it is a cancer that has no cure. All we can do is manage the symptoms–and the drugs we have do not do a tremendous job of that a good percentage of the time.
Finally there is the slowness with which NETs grow–another supposed reason this is a good cancer to get. But that slowness is part of the problem with curing the disease once it gets beyond the initial stage. Both chemo and radiation therapy attack cells that are growing fast. Because NET cancers grow at close to the same rate as healthy cells, traditional radiation and chemical treatments don’t work very well–or, in most cases, at all. The only workable option–for now–is surgery. But the long term success of that surgery is dependent in large part on when the disease is detected.
I’m glad the media has begun to distinguish between pNET and pancreatic cancer. It’s a step in the right direction. But we still have a lot of educating to do before NET cancers get the respect they deserve.
