THIS ENTRY IS ABOUT ONE OF THE BEST ORGANIZATIONS/Society's IN THE WORLD RELATIVE TO NEURO-ENDOCRINE TUMORS. BELOW IS A OVERVIEW OF THE FOUNDATION GOALS, INCLUDING A WEB LINK TO THE SITE.
This society is a very active and cutting edge organization and is making a step change difference for NET patients in Canada and by default, the rest of the world. One of the most active areas which I as an American see if the # of NET conferences which the organization puts together throughout the year. There are some key learning's I take away from this organization which could be helpful here in the USA:
1) CNETS is the one organization, that I can see, that is formed to address NET's in Canada. As noted in my prior blogs, I believe, the USA has too many organizations, all focused on NET tumors, but with differences in scope and process. Also, each organization brings additional overheads and diminishes leverage with government and industry.
In Canada, CNETS is the one organization, and I know they have already been meeting with Government for increased funding and bringing in therapies (PRRT).
They will succeed under the wonderful leadership of Ms.Maureen Coleman, President.
2) Conferences- if you get a chance to attend a CNETS conference, DO IT! They have a "European Flavor" to their presentations and bring in presenters from all over the world. Also, having lived in Canada, their medical systems and professionals are first rate, and should be, and I hope, something that is incorporated in the thousands of pages presented to the US Congress on HEALTH CARE REFORM. The system works and its wonderful.....forget what you heard from some US paranoia demonstrators that does not want "Government in health care", however, not a word about Medicare or the Medical Prescription Plan that is now costing trillions....however, I digress!
But, I recently ran into some on of these fine people US Tea party saviours, at an intersection (after seeing my local oncologist btw) , and I started a conversation with one of them.
Of course he yells at me saying "do you want Government managing your health care?" (as opposed to 'Heather at Humana Inc")?
I asked him "what the hell medicare, medicaid, and the US perscription plans were?"
He then started on the "Canadian system and how bad it was, and did i want that?!?"! I told him I lived in Canada for 2 + years and would not go bankrupt in Canada, they send you to Europe or US if they dont have the treatment available, and it is GREAT.
I then asked how he knew it was so bad in Canada and how long he lived in Canada?
He quickly moved on to the next car, to again ramble about "government interference in our lives.."its gotta stop"! and "do you want government to manage your health care?"...."the canada system is so bad......"!!!
In Cuban, carajo que estupido!
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Canada NET Conference:
The CNETS conferences are wonderful, and one gets a heavy dose of European and Canadian based MD's, therapies, technologies and medical systems. It will open our American eyes!
Another difference is their conference are heavily focused on nuclear technologies and therapies. It is good as it may open options, and you will have the opportunity to learn about PRRT and PET Gallium 68 from different MD's. Sometimes, fresh eyes and information are a good thing.
In this blog, I want to discuss three items 1) CNETS Canada 2) Montreal Conference information 3) Winnipeg Conference Video recordings- a world wide overview- USA, UK, Germany!
1) About CNETS Canada
The Carcinoid-NeuroEndocrine Tumour Society-Canada (CNETS Canada) was formed in 2007 to assist the Canadian patient and physician community to better understand diagnostic and treatment options for neuroendocrine cancer patients. Carcinoid cancer patients represent over 50% of this neuroendocrine cancer spectrum.
CNETS CANADA WEB SITE:
http://www.cnetscanada.org/index.html
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2) CNETS CONFERENCE IN MONTREAL NOV 14 &15, 2009
This is a very interesting conference and one that coupled with the city its held in, is a "MUST GO" if you can swing it. I am going to see if I can make this $$ is the issue also if still open.
The last time I went to the CNETS conference I spent more time in hotel vomiting and napping due to taking my new drug- Pazopanib, and it was very hard on me at the time. Net, I did not leverage the conference as much as I would have liked. I did get to meet some wonderful people, and met Bill Claxton who turned out to be a big help for me in Feb 2009 getting me information for Bad Berka's Dr Baum and also in helping to post the Singapore PRRT and Imaging video on UTUBE! It paid off for me!
IF YOU HAVE NET'S, ESPECIALLY NEWLY DIAGNOSED AND WANT TO LEARN ABOUT NET TUMORS AND THERAPIES, FROM A "GLOBAL PERSPECTIVE" THIS IS A CONFERENCE TO ATTEND.
Montreal 2009 Conference
November 14 & 15, 2009
Pour lire ce en français, s'il vous plaît cliquez ici.
The Montreal Conference for our NET Patient and Medical community will be at the:
Holiday Inn
Montreal Midtown
420, rue Sherbrooke Ouest
Montreal, Quebec
Canada H3A 1B4
Please click this link to reserve your room at La Plaza, Holiday Inn Montreal Midtown. Rooms are reserved under CNETS Canada at $119.00 per night. If you would like to call, the number is 1-800-387-3042 (or 1-514-842-6111 for local calls). Please mention CNETS when you enquire about rates.
To see the program for this conference, see below.
Registrations
You can register for more than one person at a time, just follow the steps that the registration process takes you through. Payment is accepted by credit card, visa or cheque. Please click here.
It will also be a Continuing Medical Education (CME) credits conference for our Medical Professionals with the Canadian Association of Nuclear Medicine issuing CME’s.
The hours of this symposium are: Nov 14 Saturday and Nov 15 Sunday
Saturday, 9:00 A.M. – 5:15 P.M. to Sunday, 9:00 A.M. – 1:30 P.M. All meals and snacks from Friday evening through Sunday breakfast and snack lunch, excluding Saturday night, which is an additional cost, are provided with your registration. For information on our meal schedule, please click here
Our theme for this conference is:
NeuroEndocrine Cancers: The Case for Research, Education, and the Expert Team.
Conference Learning Objectives
•Explore diagnosis and treatment options, medically, surgically, and through targeted nuclear and radiotherapeutic options, for patients suspected of having neuroendocrine tumours.
•Examine fundamental and clinical research aimed at understanding the causes of, and possible therapies for, neuroendocrine malignancies.
•Recognize the benefits of a team model approach to health care and the collaborative interaction between health care professionals and patients in the assessment and treatment of NeuroEndocrine malignancies.
We would also like to ask for your help with a research project that we are doing by filling out a survey. It should only take a few minutes and the data collected will be invaluable. As always, we value your privacy and it is in complete confidence. For more information about the survey, click here.
We also have a survey specifically geared towards the medical community. If you are a doctor that has had patients with Carcinoid NeuroEndocrine cancers, we would ask that you fill out our Medical Professional Survey.
AGENDA (very interesting presentations in red below)
Montreal 2009 Conference Program
Pour lire ce en français, s'il vous plaît cliquez ici.
Saturday November 14 and Sunday November 15, 2009 at the Holiday Inn Midtown, 420 Sherbrooke St W, Montreal H3A 1B4.
The hours of this symposium are:
Saturday, 9:00 A.M. – 5:15 P.M. to Sunday, 9:00 A.M. – 1:30 P.M.
All meals and snacks from Friday evening through Sunday breakfast and snack lunch, excluding Saturday night, which is an additional cost, are provided with your registration. Please see below for a schedule and location of meals
Our theme for this conference is:
NeuroEndocrine Cancers: The Case for Research, Education, and the Expert Team.
Conference Learning Objectives:
•Explore diagnosis and treatment options, medically, surgically, and through targeted nuclear and radiotherapeutic options, for patients suspected of having neuroEndocrine tumours.
•Examine fundamental and clinical research aimed at understanding the causes of, and possible therapies for, NeuroEndocrine malignancies.
•Recognize the benefits of a team model approach to health care and the collaborative interaction between health care professionals and patients in the assessment and treatment of NeuroEndocrine malignancies.
Because our agenda is being formulated at the moment, times are not yet available. However, we have the following topics and speakers we know you will look forward to hearing.
Saturday November 14, 2009
Time Topic and Speakers
9:00 Welcome and introduction
Session 1: Diagnosis and Treatment: The Jouney Unfolds (English)
9:05 Chair: Dr. Peter Metrakos (All in English)
Classification of NETs: Application and Implications
Dr. Juan Rivera, Endocrinologist, McGill University Health Centre Montreal, Quebec Staging Systems for NETs: The Importance of a Well Reported Biopsy.
Dr. Ramila Amre, Pathologist, McGill University Health Centre, Montreal, Quebec
Modalities of Treatment for NETs: Timing and Sequence: When, Where, How
Dr. Peter Metrakos, Hepatobiliary Surgeon, McGill University Health Centre, Montreal, Quebec
10:05 Questions and Answers
10:15 Coffee Break
Session 2: Surgery: First Line of Defence
10:30 Chair: Dr. Peter Metrakos
When the Tumour Invades the Mesenterium and the Lymph Nodes: What Can Be Done About it?
Dr. Lucas Sideris, Hepatobiliary Surgeon, Hopital Maisonneuve – Rosement, Montreal (French)
How do We Deal with Liver Metastases?
Dr. Prosanto Chaudhury, Hepatobiliary Surgeon, McGill University Health Centre, Montreal (English)
Our Experience with Radioembolization
Dr. Mazen Hassanain, Hepatobiliary Surgeon, McGill University Health Centre, Montreal (English)
11:30 Questions and Answers
12:00 Lunch
Session 3: Understanding and Managing Lung Carcinoids
1:00 Chair: Dr. Dan Granberg
Lung NETs 101
Dr Dan Granberg, Uppsala, Sweden (English)
The Surgery of Lung NETs
Dr. Christian Sirois, Thoracic Surgeon, McGill University Health Centre (French)
When Surgery is Not Enough
Dr. Dan Granberg (English)
1:50 Questions and Answers
Session 4: The Crucial Role of Nuclear Medicine
2:00 Chair: Dr.Al Driedger
State of the Art in Canada
Dr.Al Driedger (English)
Octreotide, SPECT-CT and other scans...what you need to know
Dr. Marc Hickeson, Department of Nuclear Medicine, McGill University Health Centre, Montreal
*14 Years of Experience with Radiopeptide Therapy using 90Y and 177 Lu DOTATOC
Dr. Jan Muller-Brand, Head, Institute of Nuclear Medicine, University Hospital Basel, Basel, Switzerland
3:15 Questions and Answers
3:25 Coffee Break
Session 5: Psycho-Social Aspects of the NET Problem
3:40 Chair: Elissa Alter
Patients’ Perspectives on the Difficulties Diagnosing NeuroEndocrine Tumours: A Qualitative Study (English)
Dr. Deana Midmer, Associate Professor and Research Scholar Department of Family and Community Medicine, Faculty of University of Toronto, Ontario
4:00 Questions and Answers
Session 6: Genetics of NETs
4:15 Chair: Dr Juan Rivera
The Value of Genetic Testing in NETs
Dr. William Foulkes, Geneticist, McGill University
4:35 Questions and Answers
Session 7: National Consensus Statement
4:45 Chair: Dr. Jean Maroun
The Canadian Consensus for the Management of NETs
Dr. Jean Maroun, Senior Oncologist, Ottawa Hospital (English)
Guidelines in NETs. Their Rise and Limitations
Dr Walter Kocha, London Health Sciences Centre (English)
The European Consensus Statement
Dr. Jan Muller-Brand (English)
6:00 Questions and Answers
Sunday, November 15, 2009
Time Topics and Speakers
7:30 - 8:30 Breakfast
8:30 Concurrent Sessions
•Lung Carcinoid
Dr Dan Granberg
•Nuclear Medicine
Dr. Al Driedger, Dr. Jan Muller-Brand
•Psycho-Social Issues
Dr. Deana Midmer
9:15 Coffee Break
Session 8: Identify Best Practices, Build a Strategic Vision for 21st Century NET Patient Care
9:30 Co-Chairs: Dr. Al Driedger and Jim Kormos, Vice President, CNETS Canada
Four Concurrent Work Groups provide input on focus questions
11:30 Coffee Break
11:25 Summary Presentations from the four Work Groups
11:45 Building a Strategic Vision to promote and create Pan Canadian Centres of NET Excellence
12:45 Lunch
Meal Locations and Times
Friday Evening Buffet Dinner
Friday, November 13, 2009, 7.30pm-10.00pm
Location: Les Verrieres Room
Saturday Morning Breakfast
Saturday, November 14, 2009, 7:00 am-8:30am
Location: Ambassadeur Rooms B and C
Saturday All Day Conference
Lunch and two snacks are included
Saturday, November 14, 2009, 8.45-5.00 pm
Location: Ambassadeur Rooms B&C
Saturday Evening Dinner
Dinner will be arranged at a lovely restaurant TBA outside the Hotel from 7.30-10.00.
Cost of dinner is included in your registration fee.
Sunday Morning Breakfast
Sunday November 15, 2009, 8.00am-9.00am
Location: Les Verrieres Room
Sunday Lunch
Sunday November 15, 2009, 12.30-1.30pm
Location: Les Verrieres Room
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3) PRESENTATIONS- WINNIPEG CONFERENCE
ALSO, CT SCANS AFTER PRRT THERAPY- WHAT YOU NEED TO KNOW?
BELOW ARE 3 VIDEOS (THERE ARE MANY MORE ON THE LINK BELOW), THAT I FOUND INTERESTING, AND IMPORTANT, COMING OUT OF THE WINNIPEG CONFERENCE. (ALL OF THEM ARE SO LOOK THEM OVER.....THIS IS MY "IMPORTANT VIDEOS".
THE PRESENTATIONS WERE FROM THE CONFERENCE IN WINNIPEG IN 2009 SPONSORED BY CNETS CANADA. THE 3 SPEAKERS WERE FROM THE USA, UK AND GERMANY- GLOBALIZATION AT ITS BEST!
ONE MAJOR ITEM TO PAY ATTENTION TO IS THE PRESENTATION FROM THE UK MEDICAL DOCTOR (DR BUSCOMBE).
HE REVIEWS THE USE OF CT SCANS AFTER PRRT. THIS IS VERY IMPORTANT, AS IT HAPPENED TO A NET FRIEND OF MINE RECENTLY AT A HOSPITAL IN NORTH CAROLINA. HERE IS WHAT HAPPENED TO HIM:
HE HAD PRRT THERAPY IN GERMANY AND LATER HAD A CT SCAN IN NORTH CAROLINA HOSPTIAL. THE SCANS WERE DONE IN NORTH CAROLINA BY MD'S WHO WERE NOT FAMILAR WITH PRRT.
AFTER THEY PERFORMED THE SCANS, THEY NOTED TO THIS POOR MAN, WHO HAS BEEN THROUGH HELL AND ADVANCED DISEASE:
"YOUR TUMORS SHOW NO REGRESSION, THEY ARE STABLE, SO THEREFOR YOUR TREATMENT WAS NOT VERY EFFECTIVE" (PARAPHRASING WHAT I HEARD FROM A RELATIVE, AS HE WAS IN THE HOSPITAL FOR SOMETHING ELSE.)
PLEASE NOTE, COPY THIS AND BRING IT WITH YOU TO YOUR MD--
IF YOU UNDERTAKE PRRT, CT SCANS WILL NOT BE A GOOD TOOL OF THE THERAPY RESULTS, AS THE SCAN WILL STILL SHOW TUMOR AND IT MAY APPEAR AS STABLE DISEASE.
HOWEVER, THE TUMOR CELLS MAY BE DEAD BUT, IT SHOWS UP IN THE CT SCAN, AND MAY APPEAR AS "STABLE DISEASE". THE RADIOLOGIST, USED TO SOMETHING ELSE, MAY INTERPRET THIS AS INEFFECTIVE THERAPY.
NOTE #1- A "STABLE CT SCAN" DOES NOT INDICATE NO THERPAY BENEFIT. ONE CAN NOT USE THIS MODALITY FOR PRRT RESULTS. IT TAKES A LONG TIME FOR THE TUMORS TO START "DISAPPEARING" IN THE SCANS. (THAT IS WHY THEY USE PET w/GALLIUM AND CT SCANS IN BAD BERKA)
NOTE #2- ONE EFFECTIVE USE OF THE CT SCAN RELATIVE TO PRRT IS, IF THE SCANS DEMONSTRATE NEW TUMORS OR ENLARGED TUMORS, THIS MAY INDICATE THE THERAPY MAY NOT BE WORKING.
THIS IS A TOPIC IS ONE YOU SHOULD TALK WITH YOUR PRRT MD AT LENGTH, BEFORE YOU LEAVE THE CLINIC CENTER.
I THINK A LETTER FROM THE MD MAY BE OF HELP, A STANDARD LETTER ON HOW TO INTERPRET A CT SCAN AFTER PRRT FOR USA PATIENTS THAT RETURN HOME, MAY BE OF VALUE, NO?
I NEED TO WRITE MY MD ABOUT THIS. I WILL POST INFORMATION ON THIS LATER. ALSO, HAVING AN MD IN THE USA THAT UNDERSTAND THIS THERAPY AND CAN HELP IN INTERPRETING SCANS IS A BENEFIT.
NET- CT SCANS FOR PRRT THERAPY EFFECTIVENESS IS NOT THE RIGHT IMAGING TOOL; HOWEVER, THE SCAN MAY BE CORRECT TO DETERMINE IF THE THERAPY DOES NOT WORK.
SEE THE VIDEOS AND LEARN....!
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> THE PRESENTATIONS:
WINNIPEG 2009 CONFERENCE VIDEOS
http://itr8.com/hosted/cnets/winnipeg09/presentation_links.htm
GO TO THESE PRESENTATIONS:
Treatment of NETs
Presenter(s): Dr. Thomas O'Dorisio, Endocrinologist, Department of Internal Medicine, University of Iowa
Duration: 39 minutes
View: broadband video standard video audio (MP3)
Radionuclide Treatment of NETs - What Patients in the UK ExperiencePresenter(s): Dr John Buscombe, Royal Free Hospital, London, UK
Duration: 38 minutes
View: broadband video standard video audio (MP3)
Radiopeptides for Diagnosis (receptor PET/CT) and Therapy (PRRT)
Presenter(s): Prof Dr Richard Baum, Zentralklinik, Bad Berka, Germany
Duration: 58 minutes
View: broadband video standard video audio (MP3)
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