Sunny more than a NET cancer number

There has been a tremendous outpouring of grief and support from the NET cancer community for Sunny Jennings Carney‘s family since her death Saturday. And nothing I am going to write today is intended in any way to detract from that support. Sunny’s work over the last ten years in trying to put a human face on this disease has certainly earned every tear being shed and every ounce of support her family will receive in the days ahead.

Let’s kill NET cancer

But Sunny’s was likely not the only death from NET cancer Saturday. On the average day 32-33 people who have been diagnosed with the disease die of NET cancer in the US. That is 230 people every week, 1035 people a month, and about 12,000 every year, roughly the number of cases that are diagnosed.

NET cancer’s human toll

Most of those people had husbands or wives or partners; many had children; and most had living parents. Their families endure the same grief that Sunny’s family is enduring right now. They have struggled with many of the same medical decisions and financial problems.

…money is in short supply for NET cancer research.

All of them faced the same grim reality: we have no cure for this cancer unless it is diagnosed so early that it is virtually undetectable. Then a relatively simple surgery offers the chance of a cure. Otherwise, the only option for killing this cancer is to die and take it with you. We can delay its progress. We can try to address the crippling symptoms and make them more bearable. But a cure is beyond us.

NET cancer: the orphan

Breast cancer patients, lung cancer patients, colon cancer patients, prostate cancer patients all know that everything is being done every day to find a cure for their disease.

NET cancer patients wish that were the case for their cancer. It is not.

We need a simple, reliable, inexpensive test…

The Caring for Carcinoid Foundation estimated earlier this year that finding a cure for NET cancer will cost $100 million. Last year, total funding for NET cancer research was less than $4 million, barely enough to fund a Phase I trial of a single drug or drug combination. At that level of funding we might stumble on a cure about 25 years from now, assuming funding keeps pace with inflation.

We need more than a cure

But even with a cure we face the mammoth problem of diagnosis. The average NET cancer patient is misdiagnosed three times before the get a correct diagnosis. And we have no idea how many people die from NET cancer and its complications who are never diagnosed at all. Some have suggested that number could be as high as 3,000,000.

…a cure for NET cancer will cost $100 million.

We need a simple, reliable, inexpensive test that will consistently detect NET cancer in its earliest stages. The 5-HIAA urine test is cumbersome at best, though a new blood test to detect those molecules is in development. But neither test will detect carcinoid tumors that excrete a hormone other than serotonin. The Chromagranin A blood test has a bit broader scope, but is very expensive to do, and not as easy to interpret as it might be. The development of better diagnostic tools needs to be another item high on our research agenda.

NET cancer and the economy

But research costs money–and money is in short supply for NET cancer research. That may be about to get worse, regardless who wins today’s election. The sequester that hits January 1 will cut the National Cancer Institute budget by 10 percent. The NCI currently funds two NET cancer research projects. The last time NCI faced similar cuts NET cancer lost all federal funding for 40 years.

All of them faced the same grim reality.

Income for most cancer organizations has flattened this year. The American Cancer Society, for example, saw an overall decline in moneys from its Relay for Life program. They fund NET cancer research to the tune of about $1 million a year–more than one-quarter of the total spent nationally on research last year. And given the ongoing weakness in the economy–and a possible slowdown if things really go south in Europe–individual giving may go into decline as well.

My NET cancer pledge

But the NET cancer community cannot afford to give up. Since Sunny’s death on Saturday, about 100 more people have received a NET cancer diagnosis. Another 100 have died of a diagnosed NET cancer. And God alone knows how many more have died without knowing NET cancer killed them.

On the average day, 32-33 people who have been diagnosed with the disease die…

Saturday is NET Cancer Awareness Day. I will renew my pledge that day to work to kill this disease. I hope you will, too.

For Jane, for Sunny, for all those who have suffered or died from the effects of this disease, and all those it seeks to claim in the future, let’s kill NET cancer.