There is a phrase I would like to see eliminated from conversations about NET: that it is less deadly than other forms of cancer.

The latest media outlet to use this line is the New York Times in a story today on the death of Steve Jobs.  While it is true that someone diagnosed with NET is more likely to be alive five years after diagnosis than those with other forms of cancer, the disease is no less fatal in the long term. There is no cure for any form of NET cancer unless it is detected very early in the process. An operation at that stage may result in a cure if the cancer has not spread into the surrounding tissue.

If it has spread all we can do is try to slow it down. But we cannot stop it. It will progress. The symptoms will gradually move from annoying to crippling to debilitating to deadly. Each stage will take longer, perhaps, than it would were it some other cancer. But the end will most likely not be the quick clean death we all dream of. Instead it will strip away control of the patients bodily functions, strip away pride, strip away dignity.

I lived with Jane’s cancer for nearly a quarter century. She lived with it for 30 years. And for 30 years it crippled her.

On one of our first dates I suggested we have something to eat after the movie. It was an innocent suggestion–something I had done  many times on dates before. And Jane went along with it. But she paid for it the next day. She told me later that any time she ate anything after 4:30 or 5 p.m. there was a substantial chance she would have stomach problems the next day.

We never ate late again after that if we could help it. But even then she would get hit with intense bloating and cramping out of nowhere. Over time those episodes became more and more frequent–and more and more intensely painful.

Over time the other symptoms evolved and became equally debilitating: intense flushing, insomnia, constant diarrhea that eventually became uncontrollable. She tried to fight through them. But eventually they became overwhelming.

I know when her body died. But when exactly did the power of her symptoms kill the person she was? That is a question I can never answer.

Every cancer is deadly. They are just deadly in different ways.