About NET cancer


Walking with Jane has created two pamphlets on NET cancer, the texts of which you can reach below.

The FAQs on NET: This is a basic primer about NET cancer written by Jennifer Chan MD, the Director of Clinical Trials for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute in response to a series of questions from Harry Proudfoot, chairman of Walking with Jane.

Is it IBS? Or is it NET Cancer? NET cancer is often mistaken for IBS because many of the symptoms are similar. This pamphlet was written by Harry Proudfoot and Jennifer Chan for lay people who may have been told they have Irritable Bowel Syndrome. Harry’s wife, Jane Dybowski, who died of NET cancer, was told for nearly 30 years she had IBS, when what she had was really NET cancer.

If you would like copies of either pamphlet in printed form, please contact Walking with Jane at walkingwithjane@gmail.com. You may also freely share the texts of these documents without further permission, though we would ask that you notify us if you decide to print a significant number of copies.


Patient Experience Stories

Patients have written the following stories for Walking with Jane about their experiences with a variety of NET cancer treatments and diagnostic techniques. These stories originally appeared under NET Cancer News but can be accessed here, as well.

Gallium-68 Scan: This is the latest–and arguably best–scanning technology for imaging NET cancers.

Chemoembolization: One of three methods of blocking the blood supply to tumors in the liver. A more general article on the technique, but without patient experiences, can be found here.

Surgery can also be an option for some patients.

Patient experiences from other sources

Until recently, PRRT, a radiation treatment for NET cancer, was not available in the US. Trials here have recently been completed and formal FDA approval should follow shortly. I do not currently have a piece on it on this site. However, patient PRRT stories of traveling to Europe are available here via PRRTInfo.org. US experiences are somewhat harder to come by, but Ed has published some things about his experience with it on his Blog.

We are currently looking for people who have experiences with Afinitor and Telotristat they can write about, as well as other drugs currently in use. Additional stories of experiences with any of the above would also be useful.