NET cancer Foundations Blogs Videos Medical Reading Trials Approvals
Support Groups Programs in NET cancer Resource page
Basic Reading Resources
Basic Information about NET cancers and Carcinoid Syndrome
This provides a good print explanation of NET cancer for a lay audience. It was written for a press syndicate for use on NET Cancer Awareness Day.
Pancreatic Neuroendocrine Tumors (PNETs)
This is an excellent primer for both medical people and patients on pancreatic NET cancer. It covers everything from symptoms to treatment options and prognosis. It is from the LSU School of Medicine, one of the leaders in NET cancer research.
Pancreatic Neuroendocrine Tumors (PNETs)
This is an excellent primer for both medical people and patients on pancreatic NET cancer. It covers everything from symptoms to treatment options and prognosis. It is from the LSU School of Medicine, one of the leaders in NET cancer research.
Questions to ask your oncologist if you have NET cancer.
This is a quick and easy intro to NET cancer, the most important part of which is a list of questions patients should ask their doctors. The site says it is not intended for US residents but the questions are exactly the ones you need to ask regardless where you are. However, some of the rest has a heavy commercial taste to it.
Caregiving advice from an expert
In our worrying about the patient we often forget there is at least one lay caregiver involved. This piece is for the caregiver about taking care of the caregiver. Regardless of whether you are facing NET cancer or some other cancer, this advice is important.
Neuroendocrine Tumor Cancer Symptoms
This is a pretty exhaustive list of symptoms covering three different forms of NET cancer. It goes beyond the list in out Is it IBS? Or is it NET? pamphlet/article that was designed to focus on that one aspect of the disease.
www.wisegeek.com/what-is-a-neuroendocrine-neoplasm.htm
This is a good basic primer in layman’s terms on neuroendocrine cancer. If you are newly diagnosed or think you may have the disease, this article and the next one are good places to start educating yourself on NEC and Carcinoid Syndrome.
www.wisegeek.com/what-is-a-neuroendocrine-tumor.htm
The second good primer on NEC written in layman’s terms. Reading this and the link directly above will give you a clearer idea of what this disease is and how it works.
www.mayoclinic.org/neuroendocrine-tumors/types.html
The Mayo Clinic offers a very easy to read series of pages on all the different types of neuroendocrine tumors. The page is very readable for patients and their friends and families.
research.dfci.harvard.edu/neuroendocrine/
The Dana-Farber Cancer Institute is where Jane went for treatment. It is ranked as the top cancer treatment facility in New England and fifth in the country. This link is to their pages on neuroendocrine tumors. While the language is fairly technical at times, it does give a good background to the subject. They currently have a section on research being done into this disease at Dana-Farber that is under development.
This takes you to Chapter 7 of a book on neuroendocrine tumors. From there you can move around through the book to other chapters. The book came out just this year and provides 245 pages worth of information on this form of cancer. Each chapter is written by people who are in the field treating and doing research on this disease. While it does get a little dense in places, if you really want to understand the disease, this text is a good place to start. Just be forewarned that it is aimed at doctors and researchers, not caregivers and patients. But I found the sections I looked at to be very readable and not that much of a struggle to get through.
Is NET more common than we think?
It is one thing when I speculate on the idea that NET may be more commonplace than we think. But when a doctor who studies the same thing says it, maybe more people will listen. This researcher says that one percent of autopsies uncover NETS that had not been previously discovered.
sciencenewsline has this article on a recent Dutch study of PRRT. I have posted one article on this in the medical section below, as well as a link to the original publication, but this article is a bit more accessible to laypeople.
Introduction to Neuroendocrine tumors
While this article is not particularly well-written, it does include, in one place, a decent overview of the current treatments.
A warning about non-traditional treatments
I do not have much use for those who believe that just the right diet will cure cancer. While there is plenty of support for diet and exercise having a role in preventing cancer, there is little scientific evidence for curative properties of such things. This article does as good a job as any I have seen at debunking the idea of “non-traditional” treatments. Do not misunderstand me here. If there is scientific evidence for something, I think one pursues it. But the evidence has to be more than someone’s opinion based on what they believe rather than on concrete evidence.
Everyone else does a Top 10 events of the year. Why shouldn’t the NET/CS Community? Here is the Carcinoid Cancer Foundation’s list.
New and Ongoing NET Cancer Research
CSHL’s Dr. David Tuveson receives grant from The Caring for Carcinoid Foundation
The grant will enable Tuveson to continue his work on developing an animal model for NET cancer.
Swedes may have cure for NET cancer
A researcher in Sweden may have a cure for NET cancer sitting in his freezer. Unfortunately, he can’t find the $1.6 million needed to begin human trials on the virus that “eats” NET cancer cells.
New somastatin analog shows promise in Phase II trial
This new drug hits four somastatin receptors rather than the two octreotide LAR does. A Phase III trial is underway at multiple sites in the US and Europe.
Researcher works on personalized medicine for NET patients
This work is funded through a fundraiser run by the Caring for Carcinoid Foundation.
Pancreatic Neuroendocrine Cancer
Symptoms and treatments for pancreatic NETs
This article does an excellent job of explaining the different symptoms of pancreatic NETs and explaining the basic treatment options.
Two drug therapy shows promise for NET patients
Phase II trial of combination of temozolomide and bevacizumab created a progression free survival median of 14.3 months.
Harvard Health Letters details pNET and current thinking
The Harvard Health Letters does a good job of explaining pNET and the current thoughts on treatment while making frequent references to Steve Jobs case in particular. Dana-Farber’s Matt Kulke is quoted in the article.
Pancreatic Neuroendocrine cancer basics
This may be the best general article on NEC that I have seen so far. While the focus is on a person with the pancreatic version of NEC that Steve Jobs had, the article does a really good job of pointing out how quickly this disease is growing–and distinguishing it from the erroneous idea that this is just another form of pancreatic cancer. It also makes clear that this cancer can appear anywhere–and is not limited to a specific organ. We need more articles that are this good.
What are islet cell neuroendocrine tumors of the pancreas?
This article, written by a nurse, does a good job of putting into layman’s terms the basics of pancreatic neuroendocrine tumors.
A good primer on pancreatic NET islet cells
Yahoo has a good basic piece on the NET cancer that killed Steve Jobs.
Article on the different types of NETs that form in the pancreas
This is a pretty straight forward article on the different kinds neuroendocrine tumors that can form in the pancreas. Each one produces a different substance which can further complicate diagnosis.
Difference between pNET and pancreatic cancer explained
This is a good explanation of the differences between pNET and pancreatic cancer.
Two faces of pancreatic cancer
This is another good explanation of the difference between pNET and pancreatic cancer.
NET cancer and Prostate Cancer
Targeting NETs of the prostate
This piece on NETs of the prostate and a new potential treatment for that form of the disease gives some background on both in layman’s terms.
Personal NET Cancer Stories
Penfield Youth Wrestling Coach Begins Bout With Cancer
This story is both a video and a written news story on a coach in New York with extensive NET cancer in his bones. He also has a blog that I have posted in the blog section.
Several walks scheduled for Canada this weekend
This is a major weekend for NET cancer patients in the Toronto area. Two individual stories are told here–both very moving.
pNet diagnosis: The Rollercoaster ride of one patient
You feel sick. You go to the hospital. They find multiple tumors–neuroendocrine tumors.
Monica Grundmann Dedicates Championship Ride to Carcinoid Cancer Awareness
What are the odds both halves of a couple have NET?
She was diagnosed three years ago. Now he has been diagnosed as well.
Teen copes with mother’s cancer
This story from thekansan.com website looks at NET from a very different perspective–that of the patient’s daughter.
Woman discovers NET after pregnancy
There were multiple tumors, but they have removed most of them–and her prognosis is better than it was.
CCF has group of survivor stories
The Carcinoid Cancer Foundation has a long list of happy outcome stories for the holiday season.
Tommie Gordon: My battle with the cancer that killed Steve Jobs
This is a truly uplifting story about an Irish newsman who has been fighting pNET since the mid-’90s. It brought tears to my eyes–and may be exactly what you need at this point if you have just been diagnosed.
Another reflection on Jobs’ death
This piece from the Albuquerque Journal talks about the columnist’s sister who died from the same form of NET as Steve Jobs.
Woman fighting NET can’t get help
And then there are stories like this one that annoy me to death. This woman wants to do a fundraiser but can get no backing from the major cancer foundations in Canada because there are not enough cases to make it worth their while–but that is just me reading between the lines.
Raising awareness–even with money–not easy
This article is about a woman who has NET in her digestive system and is trying to raise awareness about NET.
Steve Jobs fight with pNET
Year in Review: Lessons from Steve Jobs’ death from pNET
This post from MedPage looks at Steve Jobs’ death in October from the distance and calmness of three months after his death–and tries to draw conclusions about treatment from the lessons of Jobs’ decisions.
www.npr.org/2011/08/25/139942326/with-a-spotlight-on-jobs-time-to-talk-about-cancer
Steve Jobs’ announcement that he was leaving Apple Computer as CEO resulted in a spate of articles about NET and his connection to it. Many of these articles contained factual errors not least of which was that he had pancreatic cancer. What he actually had is NET that originated in his pancreas. That may seem a splitting-hairs distinction, but it is not. Of the articles I have seen, this one from NPR is the best: It gets the facts right and explains the disease quite well.
Sharon Begley does a nice job of exploring the course of Steve Jobs’ cancer and the treatment decisions he appears to have made about it. While some of the piece is speculative–Jobs was very reticent about discussing his health–she does well at explaining the issues he likely faced.
The New York Daily News did one of the best jobs I have seen on making clear what the difference is between traditional pancreatic cancer and pNET.
LA Times story on Jobs’ death covers the bases
The LA Times also did well on covering the actual disease Steve Jobs had.
Baltimore Sun correction on Jobs’ cause of death
This includes a fairly detailed description of the difference.
