Standing on the watershed

Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and past president of NANETS, calls 2010 a watershed year in the treatment of NET cancer. He cites FDA approval of the first new drugs to treat pancreatic NETs in more than a decade and a handful of papers on the basic science.

…2010 was an improvement over what had gone before…

It was a watershed for my wife and me in a very different way: we learned in August that she had NET cancer. We learned her primary care physician had never heard of it before. We also learned her first oncologist had never seen a case of it before. We met Jennifer Chan, who would become my wife’s NET cancer specialist and become a good friend to both of us.

Our shared watershed

Jane decreed she would become the first person to beat advanced NET cancer. She told her doctors to learn all they could from her. She brought a science teacher’s mind and observational powers to the NET cancer research table. And on December 10, 2010, 23 days after her 56th birthday, she would beat her advanced NET cancer the only way anyone ever had–by dying and taking it with her.

It was a watershed for my wife and me…

She also left a series of images indelibly printed on my mind: Jane sitting in the bathroom injecting herself in the belly twice–and then three times–a day with octreotide; Jane struggling up the stairs at night after a long day on the road and a long day at Dana-Farber; Jane unconscious in a hospital bed; Jane letting a final breath escape her lips–a breath I caught on my own.

My personal watershed

That night, I went home to an empty house and an empty bed. The dread quality of the silence I cannot describe–only that I knew instantly I needed to find a way for others never to hear that particular silence. Had I not already made promises to Jane, made promises to her doctors, that silence would have put me on my current course all by itself.

Jane sitting in the bathroom injecting herself…

I knew Jane had died because of ignorance. Her local doctors did not know NET cancer existed–and so had no way to test for it. We had no reliable imaging system that could see the tumors, no fully reliable blood or urine tests. Her doctors at Dana-Farber–NET cancer doctors everywhere–did not know enough about how the disease worked to have a cure–or even a treatment that worked for the majority of patients to alleviate symptoms.

Sources of ignorance

I knew that ignorance stemmed from two sources. I knew the disease was considered rare–and largely ignored except as a curiosity in medical schools and in-service training. There was little awareness of NET cancer in the general medical community–and even less awareness among the general public. It was thought so rare that in 1968 the US Congress had removed all funding for research into it and no one at the federal level had given it another thought until 40 years later.

I knew Jane had died because of ignorance.

That lack of awareness meant 40 years of virtually no research into the disease because of lack of money. People don’t donate money to diseases they’ve never heard of. Governments don’t dedicate money to diseases no one cares about beyond a relative handful of patients and their families. Neither does the cancer research establishment. No money means no research. No research means no treatments. No treatments means people die at the end of long periods of largely silent suffering.

Spend nothing, get nothing

We spent less than $2 million on Jane’s treatment and hospitalization in the last four months of her life. We spent even less on basic research that year. We spent less than a rounding error of a rounding error on what we spent on breast cancer on NET cancer research that year.

…40 years of virtually no research into the disease…

In 2010, we diagnosed about 10,000 cases of NET cancer in the US. About 105,000 were living with diagnosed disease. In the US, we had octreotide and it’s longer lasting form, Sandostatin for use in most forms of NET cancer. We had sunitinib and everolimus for pancreatic NETs.

Staring into darkness

None of those drugs offered a cure for the disease, just a hope for eased symptoms and slower tumor growth. If you were wealthy, or could otherwise scrape together sufficient money, you could fly to Europe for a radiation treatment called PRRT. It wasn’t a cure, either, but it could buy you some time and a better quality of life. If the drugs didn’t work for you, you could hope it would make a difference.

In 2010, we diagnosed about 10,000 cases…

For those who had been fighting NET cancer for a long time, 2010 was an improvement over what had gone before–but it was still a very dark time. For those of us just beginning to deal with the disease, darkness did not begin to describe what we were looking at.