Wednesday, 26 November 2014

Canadian Cancer Survivor Network launches Stomach Cancer Portal

Ottawa, ON – November 24, 2014 – 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 Canadian Cancer Survivor Network (CCSN) recognizes the burden a diagnosis of stomach cancer places on patients and the noticeable absence of Canadian resources available to them. In response, CCSN is proud to announce the launch of The Stomach Cancer Portal, an online portal recognizing and addressing the experience of gastric and esophageal cancers, whether in its early or more advanced stages:  Stomach Cancer Portal.

"It is critically important to address the information and support needs of stomach cancer patients,” says Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "We know that stomach cancer includes many practical decisions and adjustments during and after treatment, and these changes can impact the entire family. So we wanted to provide patients and families with a place to find reliable information and a place to connect to help alleviate some of the anxiety associated with a stomach cancer diagnosis.”

About the Portal

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

About Stomach Cancer in Canada

It is estimated that in 2014 [1]:
·         3, 300 Canadians will be diagnosed with stomach cancer
·         2,100 men will be diagnosed with stomach cancer and 1,300 will die from it.
·         1,200 women will be diagnosed with stomach cancer and 790 will die from it.

Incidence rates of stomach cancer continue to decline in both males (2.3% per year) and females (1.3% per year). Current rates are about half of what they were in 1985. This decline may be due to long-term improvements in diets and decreases in smoking and heavy alcohol use. The declining incidence rates of stomach cancer may also be related to the more recent recognition and treatment of infection with the bacterium Helicobacter pylori, an important risk factor for stomach cancer [2].

[1] "Stomach Cancer Statistics." Canadian Cancer Society. Canadian Cancer Society, 2014. Web. 24 Nov. 2014.
[2] Canadian Cancer Society's Advisory Committee on Cancer Statistics. (2014). Canadian Cancer Statistics 2014. Toronto, ON: Canadian Cancer Society.

Tuesday, 25 November 2014

Canadian Cancer Survivor Network 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.

Ann Hoggarth, MPP Barrie; Jackie Manthorne, CCSN President & CEO; Indira Naidoo-Harris, Parlimentary Assistant to the Minister of Health & Long-Term Care
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.

"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.” 
Derek Lawrence, Jackie Manthorne, CCSN President & CEO, Dr. Andrew Feifer, Urolic Oncologist, Fidani Cancer Centre, Sapna Mahajan, CCSN Board Member

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. 

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. http://survivornet.ca/en/cancer_basics/prostate_cancer_family_affair_portal.

Wednesday, 12 November 2014

InspireHealth: November is Cancer Caregiver Health Month

A family member can be thrust into the role of being an informal caregiver for a loved one who is diagnosed with cancer. It can be a challenge both emotionally and financially. November is Cancer Caregiver Health Month at InspireHealth, recognizing the unique emotional and support service needs for family and loved ones of people with cancer. We are encouraging family caregivers to encourage their loved ones with cancer to try our family centered supportive care approach.

At InspireHealth healing begins with you. InspireHealth is a community-based organization that provides supportive oncology care. We create an individualized physical and mental health program for people with a cancer diagnoses that encourages personal growth, higher quality of life, and improved outlook. We offer health programs that include support services for informal caregivers, like family and friends and loved ones.

“You needn’t have to go through cancer alone,” says Dr. Hal Gunn, InspireHealth co-founder and CEO. “It is vital to bring your family and friends into your healing and recovery plan to optimally support care of both you and your loved ones.”

Most new patients at InspireHealth have at least one support person, and it can make a difference in following through with fitness and mindfulness activities if the person with a cancer diagnosis has someone to go with to classes or appointments. Additionally, there are many intangible benefits to incorporating family into this type of practice, because almost all aspects of nutrition and exercise could be applied to cancer prevention within a family.

During the month of November, InspireHealth will offer new patient member signups up to two free Support Memberships to help encourage supports to participate in InspireHealth programming to truly bring the benefits home (savings of up to $190). If you have a cancer diagnosis, please mention “Support for Caregivers promotion” or “Support Membership Promotion” at the time you sign-up with InspireHealth.

If you use social media, please use the hashtag: #support4cancercaregivers to show your support in November.

Friday, 10 October 2014

Canadian Cancer Survivor Network online resource recognizes unique experiences of metastatic breast cancer patients

Ottawa, ON – October 10, 2014 – In recognition of Metastatic Breast Cancer Awareness Day on October 13, 2014, the Canadian Cancer Survivor Network (CCSN) is proud to announce the launch of an online portal recognizing and addressing the experience of metastatic breast cancer at http://survivornet.ca/en/cancer_basics/metastatic_breast_cancer_1
Approximately 30 percent of women and men diagnosed with breast cancer will at some point be diagnosed with metastatic breast cancer, and while metastatic breast cancer can be treated, it currently cannot be cured. 
This does not mean that those living with metastatic breast cancer cannot enjoy good quality of life! However, the needs and issues facing metastatic breast cancer patients are vastly different.
  • Breast cancer support groups are mostly composed of newly or recently diagnosed patients and those who have metastatic breast cancer often do not have much in common with them. Unfortunately, metastatic breast cancer support groups are few and far between.
  • Women and men living with metastatic breast cancer are in and out of treatment, hoping that their cancer will stop its progression so they have a decent quality of life. They need ongoing help both accessing and navigating the healthcare and cancer care system.
  • Metastatic breast cancer patients and their families need ease of connection to accurate, updated clinical information, improved access to clinical trials, and readily available psychosocial support.
During this month of October, when there is so much awareness raising of and fund raising for breast cancer research, we must not forget the 30 percent whose breast cancer has metastasized.
"It is critically important to address the information needs and concerns of those living with metastatic breast cancer,” says Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "Aside from purely medical considerations, the metastatic journey includes many practical decisions and adjustments. Each of these changes has the potential to impact those closest to the patient. As well, metastatic breast cancer patients often feel isolated and ignored, especially during October when they often feel that they do not have a voice in most breast cancer awareness and fundraising campaigns. We hope that our website section on metastatic breast cancer provides them a place to learn, to find resources and to share their experiences.”  
About the Portal
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.
“For those of us living with metastatic breast cancer, the words ‘you’ve got cancer’ were followed by ’we’re sorry but you cannot be cured.’ When my oncologist told me this over two years ago, I had no idea I would still be here today, says Sheila Ghosh. “At my first diagnosis, my cancer had already permeated my liver so badly that my liver was failing. I had no idea that I was sick. I felt betrayed by my own body.” But after treatment, Sheila confirms that she is doing well. “I have been back at work since May 2013. I never thought I would get a job, but I did. Now I’m happy and living a full life without pain. I can even run again and I love to walk outside in the woods with my dog. I just hope that more patients can live with metastatic breast cancer the way I have these past two years. The right treatment has allowed me to enjoy every day of my life and I am now part of a wonderful community of survivors.”
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
The portal was funded through an unrestricted educational grant from Pfizer.
About Canadian Cancer Survivor Network (CCSN)
CCSN is an organization committed to developing public policy on cancer issues and increasing advocacy for optimal cancer care and follow-up. 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 and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.
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For more information or to schedule an interview, please contact:
Jackie Manthorne                                                                                           
Canadian Cancer Survivor Network
613-898-1871
jmanthorne@survivornet.ca

Wednesday, 8 October 2014

Participate in the consultations of the Canadian Advisory Panel on Healthcare Innovation

On June 24, 2014, Health Minister Rona Ambrose announced the creation of the Advisory Panel on Healthcare Innovation to look at creative healthcare ideas and approaches that exist in Canada and abroad, identify those that hold the greatest promise for Canada, and offer its recommendations on how the federal government can support them.

Over the next year, the Panel will seek to identify five promising areas of healthcare innovation in Canada and internationally that have the potential to reduce growth in health spending while leading to better care. The Panel will also be recommending ways in which the federal government can support those innovations.

Stakeholder consultations

As part of its work, the Panel would like to hear from stakeholders. This will be done through written submissions as well as face-to-face meetings and consultations across Canada, beginning this fall. The Panel is soliciting input on your experiences in dealing with innovation within the healthcare system and what more can be done to support it in Canada.

Stakeholder consultations are targeted at organizations and individuals involved in healthcare system innovation, such as researchers, policy makers, entrepreneurs, charities, professional associations or healthcare providers.

What is healthcare innovation?

Healthcare innovation involves a range of activities around the development, uptake and adoption of new approaches that generate value in terms of quality and safety of care, administrative efficiency, the patient experience, and patient outcomes. Innovation can occur within a single healthcare facility or department (micro-level), across a regional health system (meso-level) or at the level of a provincial, territorial or national healthcare system (macro-level).

The Panel are interested in innovation that is cost-effective (i.e. yields a meaningful improvement in health outcomes for a modest increase in expenditures), or, better yet, that is cost-neutral with improved outcomes, or results in cost savings for the health system with the same or better outcomes.
Innovation depends on the support and interaction of three critical components:

·         Practice, which encompasses people and the way they work. This is not only clinical practice, but also includes processes and interactions between clinicians and patients, clinicians and administrators, administrators and policymakers, etc.
·         Structure, which includes physical, organizational, economic, legal or other mechanisms that constrain or enable the actions of individuals in the system.
·         Culture: the shared values, perceptions and opinions of individuals, and groups of individuals, with the system.

What is the panel interested in hearing about?

Successful innovation requires partnerships that cut across multiple sectors – including governments, healthcare providers and organizations, industry and research. For success, especially at the macro-level, change is needed in practice, structure and/or culture.

The Panel would like to hear about innovation that is improving the healthcare system, and what more needs to be done. This could relate to the successful introduction of new technologies and tools, new ways of working, new ways of organizing and/or financing healthcare, new ways of capturing and using information, and much more. This is an opportunity for you to share big ideas and perspectives, which would inform The Panel’s work and ultimately the advice it provides.

The Panel is interested in receiving written briefs from stakeholders of no more than five (5) pages. To assist you in drafting your submissions, go to http://www.hc-sc.gc.ca/hcs-sss/innovation/cons/_2014/chi-cis/consult-eng.php to access a series of questions . Feel free to address some or all of these, but please ensure that your submission does not exceed five pages in length.

Submissions will be accepted by email at innovation@hc-sc.gc.ca

Public consultations

This consultation is designed to offer all Canadians a chance to provide the Panel with information about their experiences with the healthcare system.

Go to http://surveys-sondages.hc-sc.gc.ca/s/healthcare_innovation_soinsdesante/?l=en where you can provide information about having seen or experienced innovations in healthcare that you think other Canadians should know about. This could include new ways in which doctors, nurses and other healthcare workers are providing healthcare to you. It could also be about ways that you, as a patient, have taken a new role in your own healthcare. Finally, it could be about your ideas as a citizen and/or taxpayer.

This consultation began on Tuesday, September 16th, and will end on Friday, November 14th, at 11:59 p.m. EST.




Tuesday, 30 September 2014

Canadian Cancer Survivor Network launches 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 affairhttp://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 pagehttps://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.
About Prostate Cancer in Canada
Prostate cancer is the most common cancer to affect Canadian men.[i]
It is estimated that in 2014:
  • 23,600 men will be diagnosed with prostate cancer.
  • 4,000 men will die from prostate cancer.
  • On average, 65 Canadian men will be diagnosed with prostate cancer every day.
  • On average, 11 Canadian men will die from prostate cancer every day. [ii]
The chance of getting prostate cancer rises quickly after a man reaches age 50, and almost two out of three prostate cancers are found in men over 65.[iii]  Age is the most important risk factor for prostate cancer.[iv]
About Canadian Cancer Survivor Network (CCSN)
CCSN is an organization committed to developing public policy on cancer issues and increasing advocacy for optimal cancer care and follow-up. 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 and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.
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For more information or to schedule an interview, please contact:
Allison Goodman
energi PR
416-425-9143 x18
allison.goodman@energipr.com                                                              
Jackie Manthorne                                                                                           
Canadian Cancer Survivor Network
613-898-1871
jmanthorne@survivornet.ca

Friday, 12 September 2014

New Canadian Cancer Survivor Network Chair wants patients to have more say

September 12, 2014, Ottawa, Ontario - Former breast cancer patient Elaine Dean was elected Chair of the Board of Directors of the Canadian Cancer Survivor Network (CCSN) at their recent Annual General Meeting.

Says CCSN President and CEO, Jackie Manthorne: “We are pleased to welcome Elaine as our incoming Board Chair. Her appointment will  help CCSN continue to grow as an organization to achieve our mission, which is to empower collaborative action by cancer patients, families and communities to identify and work to remove barriers to optimal patient care.”

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 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.”

More than 2 in 5 of Canadians experience a cancer diagnosis over the course of their lifetime. While improvements continue to be made in the early diagnosis and treatment of the different forms of cancer, with research ongoing to find cures, more needs to be done.

Elaine’s election by CCSN members is an indication of the growing opinion within the organization that breast cancer patient and survivor concerns need more universal understanding and attention, and a seat at the table.

Breast cancer is one of the most prevalent cancers both facing and feared by women in Canada today. Treatment is still not as effective or as coordinated as it should be, and unnecessary errors continue to be made in the diagnosis of breast cancer. Awareness continues to be a challenge, and more attention needs to be paid to the ongoing financial, emotional, family and workplace needs of Canadians and their families, who are experiencing or have experienced this disease.

To learn more about CCSN, please visit www.survivornet.ca or get engaged through social media:

Twitter: @survivornetca