News
Here is some recent press about various subjects in the news and upcoming events.
November 11, 2011
Worldwide NET Cancer Awareness day at Toronto General Hospital
On Friday November 11, 2011 Jackie Herman, her sister, and Joe Telheiro hosted an information table in support of Worldwide NET Cancer Awareness day at Toronto General Hospital on behalf of CNETS Canada.
We had an opportunity to share with the public WNCAD materials, pins and information about NeuroEndocrine Cancer and the role CNETS Canada plays on behalf of the NET cancer community. It was a great opportunity to contribute to raising awareness of NeuroEndocrine Cancer and we thank Toronto General Hospital for their ongoing support of our annual event.
November 8, 2011
Annette Jonah is interviewed by the Kings County Record in New Brunswick
Annette Jonah is a newly diagnosed New Brunswick NET Cancer patient who has recently been interviewed by the Kings County Record in New Brunswick as well as New Brunswick's daily paper, the Telegraph Journal. The article can be found here: http://telegraphjournal.canadaeast.com/city/article/1453996
if the link above doesn't work, here is a pdf version of that article
NET Cancer Day at the Sussex Health Centre, New Brunswick
Annette Jonah pictured here with her display, organized the Worldwide NET Cancer Awareness Day information table at the Sussex Health Centre (hospital), in New Brunswick. Annette's contact information is on the website in the Support Group section.
Recent Halifax Conference
The Halifax Conference was a great success and brought many patients, caregivers, nurses, technicians , and MDs together from Newfoundland, Nova Scotia, New Brunswick, Quebec, Ontario, Alberta, and Florida, US.
It was particularly encouraging that a large number of medical professionals registered for the conference, to be granted several hours of Continuing Medical Education credits by the Canadian Association of Nuclear Medicine. More medical education about NET cancers is welcomed wholeheartedly by CNETS Canada on behalf of the NET Cancer patient community of Canada.
A lecture on new advances in radioisotope imaging was presented by Dr Eric Turcotte, Nuclear Medicine physician and researcher from Quebec, and gave rise to much further discourse. The conference also covered a wide range of NET cancer diagnosis and treatment options during the course of the day. This very cheerful and spirited bilingual conference was further enlivened by music provided by well know signer and musician, Fleur Mainville, herself a NET Cancer patient.
Our videos of the conference are now available online here, and DVDs will be available for purchase in the next two weeks.
The cancer that plagues Steve Jobs - The Toronto Sun, Sept 12, 2011
"Ottawa's Pierette Breton can identify with Steve Jobs. Like the Apple CEO who recently resigned due to his illness, Breton well knows the battles fought in the face of cancer. The 54-year-old volunteer only wishes that the cancer that she and Jobs have, a cancer that is on the rise, could be better understood by the public and by family doctors."
Barbara Wynne Kormos, spouse of Jim Kormos, Vice President, CNETS Canada, passed away on September 5th 2011
Our deepest condolences to Jim and daughter Christine. Jim has written some history on Barbara's fight with her NET Cancer. Please click here to read his message and read Barbara's Obituary.
European Neuroendocrine Tumor Society (ENETS)
The 1st World Congress on Ga-68 and PRRT will be held in Bad Berka, Germany on June 23-26, 2011 (videotaping ) Please click here for their poster with more information
The North American Neuroendocrine Tumor Society holds conferences for Medical Professionals interested in NET Cancers. Please check out their web site at www.nanets.net
Cancer Care Ontario
Cancer Care Ontario is conducting a review of radionuclide therapy services for NET Patients in Ontario. Go to Cancer Care Ontario to find out more.
Creating Awareness of NET Cancers:
Federal and Provincial Elected Representatives receive information on issues facing NET Cancer Patients
On Sunday November 28, nine members of the CNETS Canada Toronto Group packed information into envelopes to send to every elected Federal MP and Provincial MPP/and MLA in Canada. CNETS Canada's awareness campaign is expected to be far reaching with the first stage being to create awareness of NET Cancers among our elected representatives.
Enjoying a nice day over thousands of pieces of paper
Jackie, Maria, Joe and John
John Dean sealing the envelopes
If you would like to see the information we sent out please choose the appropriate pdf file.
English Version | French Version
Worldwide NET Awareness Day in the News
Leading the charge against rare form of cancer
By Chris Halliday of Orangeville.com
When Orangeville resident Beverley Claxton, 33, was first diagnosed with a Neuroendocrine Tumour (NET), also known as carcinoid cancer, in August of 2003, "I called the Canadian Cancer Society and they said, 'You have what? '
"In fact, during her first medical appointment following diagnosis, doctors were googling for information about NET cancers from the same website Claxton had been visiting.
"That is scary because they had no idea," Claxton said. "They had no clue what to do with me."
Many years prior, Claxton's symptoms led doctors to believe she suffered from an irritable bowel at age 14. Several years later, thinking she had "the worst case of liver cancer you could ever have," doctors said she had six months to one year to live — "if I was lucky," Claxton added.
It wasn't until receiving advice from a support group headed by Maureen Coleman, who is now president of the Carcinoid Neuroendocrine Tumour Society (CNETS) of Canada, that Claxton found specialists that could treat her at the London Regional Cancer Centre in London, Ont. Read More....
Sufferers of rare cancer speak out: NETs often misdiagnosed
by P. Wilson for The North Bay Nugget
At first, Jackie Raney's doctor thought she had blood spots in her liver and that she suffered panic attacks. Beryl Lemke's doctor thought her patient suffered from irritable bowel syndrome. Margaret Binkley's daughter suffered through her teen years, the problem resulting in an appendectomy, and more years of uncertainty.
But when Beverley Binkley Claxton was diagnosed with carcinoid neuroendocrine tumours (NETs), her reaction was the same as Raney and Lemke.
"What is that?"
"Even most medical people have never heard of it,"
Binkley said Wednesday as she, Raney and Lemke manned a table at North Bay and District Hospital to raise awareness of the disease. They are members of the Cardinoid NeuroEndocrine Tumour Society of Canada. Read More....
NET Patient and Caregivers Host Information Tables about NET Cancer for Worldwide NET Cancer Awareness Day
Toronto
Worldwide NET Cancer Awareness Day went into full swing on the 10th November at Princess Margaret Hospital and at Toronto General Hospital. The librarians at both hospitals welcomed our display with interest and invited us to come back for repeat visits. Nadia Ciszek organized the Princess Margaret display and answered questions all day from NET patients and others including medical students who came to visit. Natalie, Jackie Herman, and Nebraska Penny also greeted visitors and provided information.
Jackie Herman organized the Toronto General Hospital's NET Cancer table and welcomed all those who came by with questions. Later she visted Princess Margaret Hospital across the road and spoke with visitors. Both TGH and PMH will welcome our information trifolds and conference videos.
The London Regional Cancer Centre had an awareness day on November 18. The centre has a heavy volume of NET patients and the photos above are of patients who were working at the table or visiting that day. Vicki and Bill Grummett drove all the way from St Catharines to work at the table. The London Health Sciences Centre librarian and patient education department invited us to put on an information table on clinic days.
Sunnybrook Hospital in Toronto had an awareness table on November 19 on the clinic day there and a number of people came by to ask questions. Many thanks to Bill and Pat Overell who came for the morning and answered patient questions.
Please see the pictures below.
Orangeville, Ontario; Kelowna, BC and North Bay, Ontario
A few of our members and caregivers recently set up Information tables about NET Cancers in a few small hospitals. NET Cancer Day has been an important catalyst for patients to teach Medical Professionals, Patients, and the Public about NET Cancer. Below are are some images of the displays that were set up.
Jackie Raney, who was one of the volunteers at North Bay General Hospital writes:
"There was lots of interest and questions from doctors, nurses and patients. Beryl Lemke and Marg Binkley and I greeted people and told our stories, answered the many questions and handed out the flyers and pins and bracelets. The Reporter from the North Bay Nugget came and interviewed us and took a photo".
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(l to r)Dr. Michael Stefanos, the doctor of radiology; Cholly Boland, CEO of Headwaters Health Care Centre; Dr. Peter Clarke, endocrinologist; Linda Dean; Heather Wiltshire, Library Technician; Bev Claxton; John Dean
Dr. Wang and Linda Dean
Bev Claxton and Linda Dean at the Display table at Headwaters Health Care Centre in Orangeville, Ontario
Our Display at Kelowna General Hospital.
Joanne Ferguson and Al Rich at Kelowna General Hospital.
Kelowna General Hospital
We all felt very pleased with our 3 hrs of promoting NETS awareness in Kelowna
This 4th year Medical student was intrigued with Al Rich's story of how his tumor was producing ACTH, and the fact that he presented with Cushing's Syndrome.
Margaret Binkley, Jackie Raney, and Beryl Lemke at a World NET Awareness Day table at the North Bay General Hospital, North Bay, Ontario
LRCC patients Yaslyma Ramsankar, Maureen Coleman, and Vicki Grummett. (London Regional Cancer Centre)
Maureen Coleman and Vicki Grummett
Left to right, Bob Brown, Maureen Coleman, Gale Beck, Vicki Grummett, and Yaslyma Ramsankar.
Bill & Pat Overell with Maureen Coleman At Sunnybrook
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Dufferin County Council proclaims Worldwide NET Awareness Day
Dufferin County Council proclaimed Worldwide NET Awareness Day at its meeting held in Orangeville on October 14th. This is the first municipal proclamation in Ontario and Canada. All members of Council signed the proclamation. CNETS Canada President Maureen Coleman along with Bev Claxton, Orangeville resident and NET patient and Linda Dean, Dufferin's Chief Administrative Officer and NET patient were present for the proclamation. An event is planned for November 5th at the Headwaters Health Care Centre in Orangeville to further promote NET awareness and to acknowledge the keen instincts of their professional staff who successfully suspected NETs in a local patient. Stay tuned for an update after the event.
There is something all of us can do to help promote awareness of our disease in your community. Let's shine; let's get creative and get our message out.
"If you don't suspect it, you can't detect it!"
Left to right: Linda Dean, Chief Administrative Officer for Dufferin County; Warren Maycock, Deputy Mayor of Orangeville; Maureen Coleman, President of CNETS Canada; and Bev Claxton of Orangeville.
Worldwide NET Cancer Awareness Day (WNCAD) website launched
The Worldwide NET Cancer Awareness Day (WNCAD) website has now been launched.
This site lets you know a great deal including what different countries are doing to promote and celebrate Worldwide NET Cancer Awareness Day. In Canada we are planning to have information tables in hospitals complete with the proclamation for visitors to sign as well as having basic diagnosis and treatment plus CNETS Canada information available.
We will also have an advance campaign in regard to telling our Premiers, Health Ministers, Cancer Agencies, and key Civil Servants about the day. Press kits will shortly be available on the WNCAD site as well as information materials.
In the US the Carcinoid Cancer Awareness Network, the Carcinoid Cancer Foundation, and the North American Neuroendocrine Tumour Society have started to contact State Governors about proclaiming November 10, 2010 Worldwide NET Cancer Day! CNETS Canada has Worldwide NET Cancer Awareness Day (WNCAD) pins available in French and English complete with an attached English or French card.
Carcinoid Cancer Foundation blog features Canadian events.
Recent Articles
The Articles in the Vancouver Sun and The Province are all about Jennifer Weiss and Julie Blue who participated in our conference.
On October 4th, Suzanne Stintson did a walk for CNETS. Here is an article that was recently printed in the Barrhaven Independant.
Click here to read the article (in pdf format).
To read about her walk and fundraising efforts, go to the Fundraising page.
The first interview was on September 4th by Morley Dore in Ottawa. Morley is a caregiver to his wife Barb who is a lung carcinoid patient. You can read Morley and Barb’s story here.
Here is the link to a second interview that was given in July by Joanne Ferguson who is also a lung carcinoid patient from Vernon BC.
We hope you enjoy reading these articles. They truly personalize the face of our disease. We will continue to look for opportunities to arrange interviews with the media and bring them to your attention.