Death, incidence, prevalence–a NET perspective

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

 

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

Diagnoses and deaths

About 328,030 Americans were diagnosed with gastrointestinal cancers in 2018. There were 165,460 deaths. That’s 27 percent of all the cancer deaths in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…more research than we are doing now.

In contrast, 234,030 people were diagnosed with lung cancer and 154,000 died; 334,200 new breast cancers were diagnosed and 42,260 people died.

Death by the numbers

In terms of both diagnoses and deaths, colorectal cancer is the worst of the GI cancers. Last year, 145,600 Americans were diagnosed with it: 51,020 died. It is also among the worst cancers overall in terms of mortality–only lung cancer killed more Americans last year.

There were 165,460 deaths.

Traditional pancreatic cancer was diagnosed approximately 56,770 times last year; 45,750 died from it. It is the third most common form of cancer death in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

Where NET cancer sits

Liver/biliary cancer is the fifth most deadly form of cancer. With 35,740 deaths a year, it trails breast cancer by about 6500 deaths a year. But it is a far less common diagnosis at 54,400. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…only lung cancer killed more Americans last year.

As I wrote two days ago, we have no up-to-date numbers for NET cancer. The 12,000 cases a year cited in 2012 would put it behind both stomach cancer (27,510) and cancer of the esophagus (17,650) but ahead of all other GI cancers. Even assuming a five percent increase in diagnoses, which would take the number to 16,080, it would still trail those more frequently diagnosed cancers.

But no up-to-date numbers

We don’t have any recent statistics for how many people die from the various NET cancers each year in the US either.

…more frequently diagnosed cancers.

The one thing we do know is, in 2012, about 171,000 diagnosed patients were living with the disease in the US. We had two drugs approved for use in NET cancer patients at the time–and surgery for those whose disease was discovered early enough for that to be helpful.

Making a case for an increase

We’ve since added three FDA approved drugs, liver embolization procedures, and a radiation treatment called PRRT that had been used for some years in Europe. There are additional treatments in the pipeline.

We don’t have any recent statistics…

My guess is that 171,000 patients has increased over the last seven years, perhaps significantly.

Why second?

But even if it hasn’t, NET cancer would still be the second most prevalent form of GI cancer, trailing only colorectal cancer. The others kill too fast to build up that large a number of patients. Simply put, there are very few five-year survivors of pancreatic, liver, stomach or esophageal cancer.

There are additional treatments in the pipeline.

Colorectal cancer is also deadly, but so many patients are diagnosed with it that the net gain in living patients is about 100,000 a year.

Quality of life issues

Yes, NET cancer patients can–and often do–live for many years after diagnosis. I know many patients who have fought NET cancer since before Jane was diagnosed over nine years ago. But quality of life matters–and the quality of life for many NET patients is quite poor: constant diarrhea, insomnia, intestinal pain and bloating are just some of what those patients deal with constantly.

The others kill too fast…

Our treatments, other than surgery, are not curative. They offer symptom relief and slow the progress of the disease. Nor do they work for every patient.

And many suffer for many years before they get a diagnosis. It was 30 years between Jane’s first symptoms and her diagnosis. She was an outlier, but many go 5-7 years before being diagnosed.

Research and awareness matter

The problem is the tumors really can form just about anywhere–and the symptoms can vary based on where the tumor is located and what hormones it is producing. And sometimes, there are either no hormones to detect–or, perhaps, hormones we don’t yet know how to detect.

…many suffer for many years…

All of this underlines–again–the need for greater awareness among both medical professionals and the general public–and much more research than we are doing now.