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Woman’s rare cancer discovered by accident
By Becky Martins
Editor’s note: The patient’s last names in this story have been removed to protect their privacy. Both women are from the Pittsburgh, PA area.
Michelle’s lung carcinoid diagnosis was an accident—an accident that taught the value of self-advocacy.
The stomach pain began in 2011, one week after Michelle’s sister’s death. When dull aches escalated to jabs of agony, Michelle headed to her family doctor. Cardiovascular disease had stolen her sibling, without warning or reason. Michelle wasn’t taking any chances.
Kidney stones were the first diagnosis, until the urologist ruled it out.
(Review whole story or download)
Woman battles NET cancer 14 years after diagnosis
By Phil Devitt
BOSTON — Kelly Taylor-Li starts her routine by sinking into a comfy chair and smiling. She’s already checked in and done the blood work. Now she waits.
Rain smacks the seventh-floor windows of Dana-Farber Cancer Institute’s Center for Gastrointestinal Oncology — a rigid name for what this 44-year-old suburban mother of two calls a second home.
“It gets cold here,” Taylor-Li says, thanking a nurse for spreading a blanket across her lap.
(Review whole story or download)
Warner began quest for NET answers in 1950s
By Becky Martins
A patient is improperly diagnosed and receives treatment for the wrong condition. Meanwhile, dangerous cancer cells spread, ticking like internal bombs.
Modern medicine has betrayed the patient, failing to identify and defuse the lurking evil.
This is the frightening reality of neuroendocrine tumors (NETs) and carcinoid cancers.
On average, 75 percent of NET cancer patients are initially improperly diagnosed and treated. Getting a correct diagnosis can take more than five years–by which time over 70 percent of these tumors have metastasized.
(Review whole story or download.)
CCF founded to raise funds, support NET research
By Becky Martins
The Carcinoid Cancer Foundation (CCF) is the oldest nonprofit carcinoid and related neuroendocrine tumor organization in the United States. It was founded in 1968. Chartered by the State of New York, the foundation’s mission is to conduct, encourage and to increase awareness; educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs); and serve as patient advocates.
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Is it IBS? Or is it NET cancer?
By Harry Proudfoot
Irritable bowel syndrome is a common diagnosis for people who are experiencing pain and bloating in the stomach and intestines. It is often caused by eating particular foods or by stress. Avoiding those foods or reducing stress often eliminates the symptoms of IBS.
But there is another disease with almost identical symptoms that sometimes seems to respond to those same treatments: neuroendocrine tumor cancer—NET for short. And unlike IBS, it can progress into something deadly: carcinoid syndrome.
(Review whole article or download)
Foundation seeks better NET cancer treatment options
By Phil Devitt
BOSTON — Lauren Erb never knows who’s on the line when she answers the phone, but each call reminds her of her mission. She wants to eradicate a hard-to-detect form of cancer that doesn’t get enough funding or attention.
“The patients and their loved ones keep me going,” she says. “They call all the time. It keeps you motivated. Our patients deserve better treatment options.”
(Review whole article or download)
We need more than NET Awareness Day
By Harry Proudfoot
I cannot describe what it was like to watch my wife die of NET cancer. I cannot explain to you what it was like to tell her there was nothing more we could do.
I cannot tell you what it is like to come home to a truly empty house or to wake up in a bed empty of her presence.
(Review whole story or download)
Let’s become the Official Sponsor of More Living
by Harry Proudfoot
The American Cancer Society bills itself as the official sponsor of more birthdays.
And I get it. Birthdays are a big deal. I don’t know why it was so important to me that my wife Jane not die on her birthday–or just before it–but it was. It makes no logical sense to me–but the desire for at least one more birthday was visceral.
But curing cancer is about more than birthdays. (View whole story or download)
NET cancer killed teacher, inspired response
By Meg Flanagan
Jane Dybowski was a modern renaissance woman–a brilliant scientist, a lover of literature and writing, and an accomplished athlete.
She was born in Fall River, MA on November 17, 1954 and graduated from BMC Durfee High School in 1972. She attended Bridgewater State College, now Bridgewater State University, double majoring in Biology and Chemistry. She graduated in 1976, winning the William B. Vinal Award in Zoology. (Review whole story or download.)
Husband wants to put human face on NET Cancer
By Katie Dupere
When Harry Proudfoot lost his wife Jane Dybowski to neuroendocrine tumor cancer (NET) in December of 2010, he realized the only way he could grieve was by going after the disease that killed his wife. Walking with Jane has been the outlet for his grief and his attempt to “kill the disease.” (Review whole story or download)
Photos and Art
Photos and Art 2
Massachusetts Proclamation NET Cancer Awareness 2011
The following are links to foundations and organizations that can also serve as sources of information on NET Cancer and Carcinoid Syndrome.
www.carcinoid.org
This is the oldest of the other organizations I know about working on neuroendocrine cancer, neuroendocrine tumors, and carcinoid syndrome. In addition to information on this form of cancer, they also provide links to support groups for patients and caregivers and sponsor some conferences aimed at a lay audience. The founder here is a doctor who is one of the leading experts on the disease. They have been very good about helping me think through what the purpose of Walking with Jane needs to be.
www.caringforcarcinoid.org
The founder of this organization is a lawyer who discovered she had NEC only after she collapsed in the subway. Because they are located in Boston I have spent more time with them than the other two foundations. Their site has good information about the disease and blogs from both their founder and their director. Thanks to the generosity of their founder and their board of directors, all the money they raise goes directly into research. They participate in a wide range of walks and runs across the country. They have raised about $6 million since their founding. They send out a regular newsletter by email. This group has also been very good about providing advice and encouragement as I have worked to set up Walking with Jane.
www.carcinoidawareness.org
I particularly like their motto, “If you don’t suspect it, you can’t detect it.” They were founded in 2003. According to their website they came up with the zebra bracelets and stuffed animals as a symbol of the disease based on a version of a quote I first heard from Jane’s cardiac surgeon the night before she died: “We spend years teaching young doctors that when you hear hoofbeats you shouldn’t look for zebras. A zebra killed your wife.” They also offer help in finding support groups.
thenetalliance.com
This group is sponsored by Novartis. They have a wide range of videos and information on NEC and CS. They also offer links to support groups, videos of people who are living with the disease, and NEC fundamentals.
North American Neuroendocrine Tumor Society
NANETS sponsors and organizes continuing medical education programs for medical personnel dealing with neuroendocrine tumors and carcinoid syndrome. They are sponsoring a major conference in Minneapolis later this fall that will include researchers and doctors from 17 different countries. A paper on some new research that has not yet been published will be presented there. This is an A List conference that reads like a who’s who in the NET universe.
Additional Press Resources
Dr. Edward M. Wolin, co-director of the carcinoid and neuroendocrine tumor program at the Samuel Oschin Cancer Center is available for interviews by reporters. The link on his name will take you to the information you need to set up that interview. Wolin is one of the leading lights on NETs and CS.
The Caring for Carcinoid Foundation released this statement on the death of Steve Jobs and the nature of the difference between pNET and traditional pancreatic cancers. They are significantly more diplomatic than I was in my press release.
Writers and editors:
Harry Proudfoot taught journalism for 34 years. Newspapers he advised won numerous awards from scholastic press associations. He received a Gold Key from Columbia University in 2008 for his contributions to scholastic journalism. He has written for a wide range of media on a variety of subjects. He is CEO and Chairman of the Board for Walking with Jane, Inc.
Phil Devitt is the editor of the Fall River Spirit and a graduate of the journalism program at Roger Williams University. He has also been a reporter for the Standard Times.
Becky Martins graduated from the University of Massachusetts Amherst with a BBA in marketing and a BA in journalism; she was also a columnist for the school paper. Today, she works for EMC Corporation in New York City.
Meg Flanagan was the 2006-2007 Managing Editor and 2008 Copy Editor of The Comment (Bridgewater State University, Bridgewater, MA). She holds a M.Ed. in Special Education, a BS in Elementary Education and a BA in History.
Emily Brinkmeyer worked as the opinion editor and later as an assistant copy editor at the NT Daily at the University of North Texas. She graduated from UNT with a degree in technical writing. She works as a freelance technical writer.
Katie Dupere is a sophomore at Syracuse University’s S.I. Newhouse School of Public Communications.
