Editor’s Note: What follows is the text of a press release I sent today to over 100 newspapers, television stations, news websites, and news services in an effort to help them get the facts straight about neuroendocrine cancers. I cannot begin to describe the basic factual errors that are rife in even the best reports I have read in the 26 hours since Jobs’ death. That is a piece for another day.
Steve Jobs did not die of pancreatic cancer. He died of NET cancer that began in his pancreas.
That may sound like a fine distinction. It is not.
NET is a rare form of cancer that often starts in the small intestine, appendix or pancreas. It has also been found in many other places. Truthfully, the tumors can form just about anywhere.
Unlike a normal cancer that can grow very rapidly, NET typically grows very slowly–at about the same rate as the cells in the rest of your body. This slow growth rate may be one of the reasons traditional forms of chemo and radiation therapies don’t work very well on this disease.
Also, unlike most normal tumors, NEC tumors take an active role in the body’s chemistry. A neuroendocrine tumor can produce nearly any hormone or peptide the organs in the body can produce. The hormone most often produced is serotonin, but it can also produce adrenaline or any of a wide variety of peptides or other hormones.
And those extra hormones can produce any of a number of medical problems—ranging from insomnia to heart disease and eventual heart failure.
Early next month, Walking with Jane, a foundation set up to raise awareness about this disease, will release a series of articles on NET that will be available free to any news organization. Those articles will include an overview of NET, interviews with doctors and researchers, patients and caregivers, and the foundations and organizations working to raise money and awareness of this currently incurable cancer that currently afflicts at least 125,000 Americans. They are set to arrive in the run-up to Worldwide Neuroendocrine Tumor Awareness Day on November 10.
In the meantime, news organizations that want more information about the cancer that killed Steve Jobs can visit any of the following websites: walkingwithjane.org, nanets.net,carcinoid.org, caringforcarcinoid.org, carcinoidawareness.org, and thenetalliance.com.
