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Welcome to the Canadian Cancer Survivor Network's monthly newsletter!
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CCSN October 2014 Eletter

The Canadian Cancer Survivor Network (CCSN) works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer. CCSN engages in and encourages research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.
Opportunity to take part in an important survey about Xtandi!
The purpose of this survey is to provide us with insights from patients and caregivers and perspectives about living with and managing metastatic prostate cancer.

Please take a few moments of your time to participate in CCSN’s survey about Xtandi and/or send it to friends, colleagues or fellow support group members. 

Information gathered will be used in order to complete a patient evidence submission to the pan-Canadian Oncology Drug Review for enzalutamide (Xtandi) for the treatment of patients with metastatic castration-resistant prostate cancer (mPRPC) who are asymptomatic or mildly symptomatic after failure of androgen deprivation therapy who have not received prior chemotherapy.

This survey will be available starting now and remain open until October 6, 5 pm, 2014.

To access the survey, go to https://www.surveymonkey.com/s/JCXNYJH

Your personal information is never shared or disclosed, but is used only by CCSN for input for statistical purposes.

Thank you for your participation!

NEW CCSN website portal released!
A Family Affair: Prostate Cancer Family and Caregiver Portal
Online resource recognizes unique family and caregiver experience of prostate cancer

Toronto, ON – September 30, 2014 – For those dealing with prostate cancer, the journey from diagnosis to treatment and management of the disease is rarely a road travelled alone. Spouses, partners, children, extended family, friends and even colleagues may share in the burden of this life-changing disease.
 
The Canadian Cancer Survivor Network (CCSN) recognizes the heavy burden a diagnosis of prostate cancer places not only on the men who are diagnosed with it, but on their families and extended support networks. In response, CCSN is proud to announce the launch of A Family Affair: Prostate Cancer Family and Caregiver Portal, an online portal recognizing and addressing the experience of prostate cancer, whether in its early or more advanced stages, as a family affair http://survivornet.ca/en/cancer_basics/prostate_cancer_family_affair_portal.
 
"It is critically important to address the information needs and concerns of a man’s support network,” says Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "Each man will have their own experience of prostate cancer. Aside from purely medical considerations, the journey includes many practical decisions and adjustments. Each of these changes has the potential to impact those closest to him. Providing families and other caregivers a place to find reliable information they can relate to, and a place to connect, can help alleviate some of the anxiety associated with a prostate cancer diagnosis.”
 
About the Portal
The Prostate Cancer Family and Caregiver Portal provides a trusted and accurate source of prostate cancer information – and connection. Like the spokes of a wheel, sections on the portal centralize information on the diagnosis and treatment of prostate cancer, provide information and resources on financial planning and address the issues that wives and partners face, but may be embarrassed or reluctant to articulate.

“Being diagnosed with prostate cancer was an overwhelming experience for my family and me,” says Derek Lawrence. “At first, we weren’t sure where to turn for information and support, and felt a bit lost in the shuffle. Thanks to the efforts of the Canadian Cancer Survivor Network, men like me, and our families, now have access to important resources. The new portal provides relevant and easy-to-interpret information to help support us as we learn to cope with our disease and continue fighting. It also allows us to connect with others going through the same difficulties; to know we aren’t alone.”

 
The portal also includes:
  • Information for wives, partners and adult children as caregivers
  • Details on caregiving for advanced prostate cancer
  • Financial information and resources
  • Prostate cancer organizations and news
 
Social media platforms including a prostate cancer Twitter account, @prostatepost, a Facebook page https://www.facebook.com/prostatepost and a community blog http://prostatepost.blogspot.ca/ have also been set up to encourage sharing and learning through conversation, storytelling and information transfer.
 
The portal was funded through an unrestricted educational grant from Astellas Pharma Canada, Inc. and Janssen Inc. 
CCSN web committee meeting update!
Challenges and opportunities in updating the CCSN website (www.survivornet.ca) were the topics for CCSN’s Web Committee meetup Friday and Saturday September 26 & 27. The group looked at adding more ways for patients, survivors, and caregivers to share their stories, online community-building, ways to illustrate the cancer journey, participation and a voice in healthcare.

Website accessibility, information gathering and sharing, reporting on new treatments and calls to action were important subjects tackled by the group. Members carefully considered implications of community input by the responders to CCSN’s survey on what is important on the website, and they looked at website statistics over time.

You can still take the survey here, to give input to the committee for their next meeting.
CCSN web committee members (from left to right) Todd Kasenberg, Cory Pagé, Matt Handy, and Andrew Buzzell take a break during the meeting.
Join CCSN at 11AM EST on Friday, October 3rd for a special webinar on prostate cancer!
Join us on Friday, October 3rd, 2014 for a webinar featuring an extremely knowledgeable voice in advanced prostate cancer: Dr. Bobby Shayegan. Using his extensive experience in both urology and prostate cancer surgery, he will explain his involvement with the disease and insights from years of working in the field. To register for this webinar, see the "How to Register" section below.
Dr. Shayegan is currently an associate professor in the department of surgery at McMaster University.  He received his MD and completed his urology residency from the University of Toronto.  He subsequently pursued a fellowship in urologic oncology at Memorial Sloan-Kettering Cancer Center.  At the present time, Dr. Shayegan is the Head of Surgical Oncology, Deputy Chief of Surgery and Chair of the Surgical Robotic Programme at St. Joseph’s Healthcare, Hamilton.  His clinical and research interests include, prostate cancer across the entire spectrum with a focus on the use of robotic surgery in early stage disease as well as systemic therapeutics in castrate resistant disease. 
HOW TO REGISTER

This FREE webinar is being held on Friday, October 3, 2014 at 11 AM EST. To participate, you will need to register by clicking the registration button below and filling out the form. CCSN will then email you the link for participating in the webinar and login instructions.

This CCSN webinar series is of interest to patients, survivors, family, friends, caregivers, and any member of the community interested in the best possible care and follow-up for cancer patients and survivors. The impact of volunteering and taking positive action to effect change are important elements in the transition to post-treatment life.
Click HERE to register for the webinar!
Opportunity for breast cancer patients & survivors: Project LEAD

Project LEAD Workshop opens for nominations

The Canadian Cancer Survivor Network invites you to apply for the November 14-16, 2014 Project LEAD workshop in Washington, DC.

Click this link to register for the workshop: http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/washington-dc-metropolitan.html

The National Breast Cancer Coalition (NBCC) is holding a Project LEAD introductory-level workshop. This two-and-a-half day program will teach the basics of breast cancer science and the biomedical research process, how to more accurately understand scientific information in the news and how to become a more effective breast cancer advocate in your community. You will also be eligible to participate on research funding panels for those organizations who welcome patient input.

The general registration deadline is November 7, but to receive a letter of support from CCSN, we encourage you to contact us now at jmanthorne@survivornet.ca to start the application process.

The course is free to NBCC members, and the annual membership fee is only $35. Registration is open to those who have not previously taken any Project LEAD courses. There are limited scholarships available, see the website above as the scholarship deadline is October 14.
Make your voice heard: participate in CCSN's medical marijuana survey!
Don't miss this opportunity to make your views known about an important issue that is constantly in the news! 

Click here to take our survey!
One of the most publicized patient-led issues today is medical marijuana. The Canadian Cancer Survivor Network is launching our Medical Marijuana survey today to obtain your opinion, find out what you need to know about the issue and to help us provide answers.

Earlier this year, Health Canada introduced new
 Marijuana for Medical Purposes Regulations (MMPR), which caused much debate. To enable you to participate in this debate, please give your input, and watch our website for information while we try to clarify the issues, and keep you up to date.

One of our core values is to provide patients and survivors with current knowledge about treatment, options and outcomes in patient care. Therefore, we felt it was important to inform ourselves and you about medical marijuana.
Over the coming months, we will be working with CannMedica Pharma Inc., a licensed producer of medical marijuana in Canada. This partnership will allow us to provide you with information on our website, and hold webinars to better inform you about the clinical use of medical marijuana, the new law, and more. 
We invite you to take this short survey and engage in the debate. Your opinions will help CCSN provide the best information possible about what you need and want to know about medical marijuana.

Like all of our previous surveys, the information you share with us will be kept strictly confidential.
Click HERE to fill out the survey!
An Evening with the Mayo Clinic: Calgary
Enhance your lifestyle & reduce cancer risks!

The Mayo Clinic is hosting an exclusive dinner reception in Calgary on October 7th in partnership with the Canadian Cancer Survivor Network and if you are in the Calgary area, we encourage you to attend!
Internationally renowned Mayo Clinic Oncologist, Dr. Ruben Mesa is the keynote speaker and will be discussing some of the latest information on simple and effective steps to modify your lifestyle and reduce cancer risks in men and women. Jackie Manthorne, President of the Canadian Cancer Survivor Network will be a guest speaker and will
describe the exciting work being done by the CCSN - we hope you can attend!  A link to the event details and RSVP is included below.

An Evening with Mayo Clinic: Enhance Your Lifestyle and Reduce Cancer Risks - Calgary
CCSN has a new Chair of its Board of Directors!
Former breast cancer patient Elaine Dean was elected Chair of the Board of Directors of the Canadian Cancer Survivor Network (CCSN) at our recent Annual General Meeting.
Elaine has been a volunteer member of CCSN Board of Directors since shortly after its incorporation in November 2011. Since 1990, she has participated as a trained consumer reviewer in peer review research panels here in Canada as well as in the U.S. and overseas. Elaine has also served as spokesperson on breast cancer issues for CCSN, a role she will continue as Chair.

Says Elaine: “What is unique about CCSN is its ability to represent the voice of Canadians as cancer patients and cancer survivors, with Canada’s healthcare professionals, the public and with policy makers.


As an organization, we are deeply committed to sharing the latest information available to Canadians about cancer. What we would like to see, is
more active engagement of patients and former patients within Canada’s healthcare community.”

To read more about Elaine and CCSN, click here!
CCSN partner group spotlight: Cancer Knowledge Network
Cancer Knowledge Network (CKN) is North America’s most widely read cancer education resource.  What sets them apart from the crowd?
Contrary to most cancer organizations in North America, CKN offers its readers a tangible, practical way of living with cancer, from beginning to end. Credible, vetted, and relevant information is offered to viewers on
every level of the cancer continuum.  They don’t shy away from the difficult topics; they embrace them as integral parts of living with cancer.  Whether their viewers are newly diagnosed, long term survivors, caregivers or oncology professionals, CKN provides the navigation system through which they can find their way.  Cancer is a journey…they're with you every step of the way.

Read more at 
https://cancerkn.com/
CCSN's YouTube videos on chemo-induced nausea and vomiting

The Canadian Cancer Survivor Network has produced three videos on chemo-induced nausea and vomiting. Check them out here!

  • The late Catherine Mooney, from Charlottetown, PEI, battled breast cancer twice. To see her story, go to: http://youtu.be/V5GDkcII-6U
  • Marlo Taylor, an ovarian cancer survivor from Toronto, Ontario. To see her story, go to: http://youtu.be/vfLh73OjDek
  • Isabelle Barrette, a young mother from Montreal, Quebec, who is currently undergoing breast cancer treatment . To see her story (in French), go to: http://youtu.be/2hYeYwiOCPg
Follow CCSN on our social media pages!

Twitter
@survivornetca - our main twitter account of information, news and resources on all cancers
@bestbreastnews - contains information on breast health and breast cancer
@prostatepost - news, events and resources on prostate cancer
@canadianmeso - details on asbestos and mesothelioma
@CanadaCINV - is about chemo-induced nausea and vomiting
@LungCancerCan - focuses on lung cancer news, events and awareness
@CCSNpoli - general, non-partisan talk about the politics of healthcare and cancer care

 

Facebook
Click here to 'like' us on Facebook!
Pages dedicated to asbestos and mesothelioma and prostate cancer!

 

Pinterest
Follow us on our Pinterest page!

 

Blog
Follow our main blog: Jackie Manthorne's Cancer Blog
Follow our blog focused on asbestos and mesothelioma: Canadian Meso Blog


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