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CCSN November 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.
CCSN hosts Ontario Legislative Reception to raise awareness of metastatic prostate cancer
Ottawa, ON – November 19, 2014 – In the month of November focused on men’s health, the Canadian Cancer Survivor Network (CCSN) was pleased to host its third annual breakfast reception at the Ontario Legislature to highlight the challenges faced by metastatic prostate cancer patients and their families and the increasing number of treatment options that provide a good quality of life while living with this disease.
 
The reception was hosted by Ann Hoggarth, MPP for Barrie, followed by an overview of CCSN by Sapna Mahajan, CCSN Board member, who shared the personal journeys of important men in her life to illustrate why young women should be concerned about best treatment for prostate cancer.
 
Keynote speakers included Dr. Andrew Feifer, an urolic oncologist at the Trillium Health Partners’ Fidani Cancer Center at Credit Valley Hospital and Derek Lawrence, who lives with metastatic prostate cancer. Indira Naidoo-Harris, Parliamentary Assistant to Dr. Eric Hoskins, Minister of Health and Long-Term Care, Christine Elliott, Deputy Leader of the PC Party of Ontario and PC Health and Long-Term Care Critic and France Gélinas, NDP Critic, also offered remarks.
Left to right: Derek Lawrence, Jackie Manthorne, CCSN President & CEO, Dr. Andrew Feifer, Urolic Oncologist, Fidani Cancer Centre, Sapna Mahajan, CCSN Board Member.

"The treatment landscape for patients with metastatic prostate cancer is changing after many years without new options. We are pleased to continue to raise awareness among Ontario MPPs of the importance of
access to new treatments that can extend life that is of good quality,” said Jackie Manthorne, CCSN President and CEO. "Most awareness campaigns for prostate cancer focus on early detection and prevention and celebrate survivorship. We feel it is also important to help men living with metastatic disease to tell their stories.” 

Reception sponsor MPP Ann Hoggarth shared her own cancer journey and that of other family members. MPP Indira Naidoo-Harris spoke of the government’s commitment working with patients rather than for patients while striving for world-class treatment in Ontario, and urged  MPPs to listen to patients and patient groups. Both MPP Elliott and MPP Gélinas echoed the need for access to treatment and support for caregivers; MPP Gélinas highlighted the special concerns of those from northeastern Ontario in accessing treatments where they live.  “It is wonderful to see such support and sensitivity for this issue from our members of the Ontario Legislature,” said Manthorne. 
Left to right: Ann Hoggarth, MPP Barrie; Jackie Manthorne, CCSN President & CEO; Indira Naidoo-Harris, Parlimentary Assistant to the Minister of Health & Long-Term Care

Dr. Andrew Feifer, noted urolic oncologist at Trillium Health Partners’ Fidani Cancer Centre and the University Health Network, reminded the audience of the need for access to a variety of treatment options.
He spoke about the husbands, brothers, uncles and sons that he treats, saying, “We should not – indeed cannot – fail these men in their time of need.  Our profession must deliver new therapies and treatment protocols.”

Eighty-four-year old Derek Lawrence gave a human face to the discussions that preceded his presentation. He spoke of the impact that his diagnosis has had on him and his wife Margaret. “Time is so important to those of us living with metastatic prostate cancer. I am 19 years post-diagnosis and treatments are much improved today.  As long as we can access new medicines and receive support, we can be around for a long time.”

CCSN has also recently launched 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. Click here to learn more about this section!
WATCH: YouTube video of Ann Hoggarth's statement in the house
CCSN launches The Stomach Cancer Portal
For those dealing with stomach cancer, the road from diagnosis to treatment and management of the disease is a challenging, burdensome journey. Stomach cancer impacts one of our most vital organs forcing patients to undergo significant lifestyle changes, and caregivers, partners, families, friends and other loved ones may share in the hardship of this life-changing disease. 

The Stomach Cancer Family Portal provides a trusted and accurate source on gastric and esophageal cancer information – and connection. The sections in the portal centralizes information on diagnosis and treatment of stomach cancer, provides information and resources on financial planning, all while imparting essential links and resources to websites, blogs and other materials specific to Canadian patients.

The portal also includes:
  • Links to blogs and websites related to survivorship 
  • Nutritional information for pre and post-gastrectomy
  • Financial information and resources
  • Stomach cancer organizations and news
In addition to the Stomach Cancer Family Portal, CCSN has established a unique Twitter page, which can be accessed @stomachcancerca.

Click here to be taken to the new portal!
Join us for these upcoming webinars!
New Directions in Pharmaceutical Coverage
Host: Bill Dempster, 3Sixty Public Affairs
Date: Thursday, November 27
Time: 1:00pm ET
Register here!

Advanced Advocacy Toolkit

Host: Ryan Clarke, Advocacy Solutions
Date: Thursday, December 4
Time: 1:00pm ET

Register here!
Check out our other website portals
This fall, we have been hard at work improving our website. In addition to our brand new section on stomach cancer, we have produced two new major sections, on Metastatic Breast Cancer and Prostate Cancer. These sections are designed to provide our you with in-depth information on topics that matter to you. Below you will find more information on both sections, with links to both. We hope they are useful to you!

Prostate Cancer: A Family Affair

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.

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
Click here to be taken to the section on prostate cancer!

Metastatic Breast Cancer

The Metastatic Breast Cancer Portal provides a trusted and accurate source of metastatic breast cancer information, from the history of Metastatic Breast Cancer Awareness Day to Telling our Stories: living with metastatic breast cancer.

CCSN’s Metastatic Breast Cancer Portal also includes sections on:

  • What makes metastatic breast cancer different?
  • Statistics and research in metastatic breast cancer
  • Metastatic breast cancer blogs
  • Bone health in metastatic breast cancer patients
  • Think before you pink campaign
  • Resources for metastatic breast cancer patients
Click here to be taken to the section on metastatic breast cancer!
 
Watch our YouTube videos on Chemo-Induced Nausea & 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
CCSN partner group spotlight: Save Your Skin Foundation
The Save Your Skin Foundation was created by family, friends, and colleagues of Founder Kathy Barnard. Kathy is currently fighting her own battle with melanoma. The Foundation started with the dream of Kathy’s sister Rose. One day as Rose was running through the beautiful trails of North Vancouver, she knew it was time to take action. The family had been through a stressful few years trying to find information on melanoma treatments and research and discovered that there was not much current information available.
Save Your Skin wants to change that. Their immediate goal is to raise overall awareness of melanoma and non-melanoma skin cancers. They are also committed to providing melanoma patients with access to information about available treatment options, including hard-to-find trial options. Most treatments are still in the experimental stages but are having great results.

For more information:

 

Save Your Skin Foundation

Toll free: (1)- 800-460-5832
Kathy Barnard: Founder and President of Save Your Skin kathy@saveyourskin.ca
Madelynn Festing: Communications & Press Relations kfm@saveyourskin.ca
Félix-Antoine Léveillé: Quebec Relations fleveille@saveyourskin.ca
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
@MedMarijuanaCan - news and information regarding medical marijuana

@stomachcancerca - information and resources on stomach cancer 

 

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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