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

Wednesday, 6 August 2014

Scientific peer review of breast cancer research applications for the department of defense

Breast cancer advocate Dianne Moore of Toronto recently participated in the evaluation of research applications submitted to the Breast Cancer Research Program (BCRP) sponsored by the US Department of Defense. Dianne was nominated for participation in the program by the Canadian Cancer Survivors Network of Ottawa. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $120 million appropriated by Congress for Fiscal Year 2014 (FY14) will be spent on future breast cancer research. 

Consumer reviewers are asked to represent the collective view of breast cancer survivors and patients, family members, and persons at risk for the disease when they prepare comments on the impact of the research on issues such as disease prevention, screening, diagnosis, treatment, and quality of life after treatment. Commenting on her role as a consumer reviewer, Dianne said that “As a breast cancer survivor and consumer reviewer, my comments were given serious consideration by the scientists and doctors and I had a vote on all the proposals that were evaluated.”

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of breast cancer research applications since 1995. To date,more than 850 consumer reviewers have served on breast cancer panels alongside scientists in the review process. Colonel Wanda L. Salzer, M.D., Director of the Congressionally Directed Medical Research Programs, expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions. "The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient's perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research." 

Thousands of breast cancer research applications will be reviewed for 2014 fiscal year funds. Scientists applying propose to conduct innovative breast cancer research aimed at the elimination of breast cancer. The BCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking. More information about the Department of Defense Breast Cancer Research Program is available at the Website: http://cdmrp.army.mil.

Friday, 20 June 2014

Canada’s federal government should be ashamed of itself!

Laurena Smith
Features Writer, Canadian Cancer Survivor Network

With the closure of the last two asbestos mines in 2011, Canada’s export industry for the toxic mineral is not expected to make a return any time soon. Even Premier Jean Charest’s promised 58 million in loans to reopen the Jeffrey Mine in aptly named Asbestos, Quebec went unfunded when the Parti Quebecois  won the 2012 provincial election by promising to keep it closed. It’s 2014, and while Liberals are back with a majority government in Quebec, but asbestos mining barely registered on the election radar [1].

Meanwhile, the Harper government is not saying whether they will be joining the over 50 countries that have banned the import and export of the known carcinogen. In fact, they are not saying much of anything at all.

Repeated questioning from the Opposition in the House of Commons has not yielded much in the way of a response.  Natural Resources Minister Greg Rickford, answering for Labour Minister Kellie Leitch after she remained silent during Question Period, stated that the government would not block the listing of chrysotile at the upcoming 2015 Rotterdam Convention [2]. The Rotterdam Convention, a United Nations treaty which includes 52 signed nations, requires the exporters of hazardous substances to disclose the risks [3].

With a dead industry and no exports, Canada has little reason to block the list of the mineral. 
Harper’s Quebec lieutenant, Christian Paradis explained that because the previous Parti Québécois government refused to revive the bankrupt Quebec asbestos industry, causing its shutdown, there was no point in Canada blocking the listing of chrysotile asbestos. As economic interest waned, the government had no issues with changing their stance, never mind the very real health threat the mineral poses to Canadians.

Ottawa’s position maintains that chrysotile, the ‘less deadly’ version of other asbestiform minerals, when handled safely and responsibly poses only a minimal health risk. Health Canada states, ‘it is generally accepted that chrysotile asbestos is less potent and does less damage to the lungs’ [4]; yet chrysotile represented 95 per cent of all asbestos used over the past century [5]. It also remains the top killer in Canadian workplaces and is responsible for a reported 2,268 on-the-job deaths from 2007-2012 [6]. This does not account for deaths which occurred outside the workplace.

Exposure to asbestos remains a major issue: older schools, hospitals, homes and building materials can contain the substance, leaving many Canadians to become exposed without their knowledge [7]. Furthermore, neglect of safety procedure when removing asbestos from properties can endanger not only workers but people in nearby vicinities, their families, friends and other bystanders [8]. Exposure to these fibres can cause painful lung-related diseases, including two deadly forms of cancer: mesothelioma and lung cancer [9].

As more asbestos is uncovered, demolished, and removed; rates of mesothelioma, a cancer caused almost exclusively by exposure to asbestos, are expected to rise dramatically. Once diagnosed with mesothelioma, individuals are expected to only live between six months and a year [10]. The Canadian government has a responsibility to protect not only those individuals affected by mesothelioma, but to ban and remove asbestos completely from the Canadian market and ensure the standards for the safe removal of asbestos are met.

References

[1]"Asbestos Mine Was Not An Issue in 2014 Quebec Election." Asbestos Facts Canada. Asbestos Facts Canada, 11 May 2011. Web. 18 June 2014. <http://asbestosfacts.ca/information/asbestos-issue-2014-quebec-election/>.
[2] Galloway, Gloria. "Government Silent as Questions Mount about Asbestos Danger." The Globe and Mail. The Globe and Mail, 17 June 2014. Web. accessed 18 June 2014. <http://www.theglobeandmail.com/news/politics/federal-opposition-raises-asbestos-policy-issue/article19214039/>.
[3] "No Safe Use: The Canadian Asbestos Epidemic That Ottawa Is Ignoring." The Globe and Mail. The Globe and Mail, 14 June 2014. Web. accessed 18 June 2014. <http://www.theglobeandmail.com/report-on-business/no-safe-use-as-the-top-workplace-killer-asbestos-leaves-a-deadly-legacy/article19151351/>.
[4] "Health Risks of Asbestos." Health Canada. Government of Canada, 14 Oct. 2012. Web.  accessed 18 June 2014. <http://healthycanadians.gc.ca/environment-environnement/outdoor-air-exterieur/asbestos-amiante-eng.php>.
[6] "No Safe Use: The Canadian Asbestos Epidemic That Ottawa Is Ignoring." The Globe and Mail. The Globe and Mail, 14 June 2014. Web. accessed 18 June 2014. <http://www.theglobeandmail.com/report-on-business/no-safe-use-as-the-top-workplace-killer-asbestos-leaves-a-deadly-legacy/article19151351/>.
[7] ibid.
[8] ibid.
[9] "What Are Asbestos-Related Lung Diseases?" NIH. National Heart, Lung and Blood Institute, 1 May 2011. Web. accessed 18 June 2014. <http://www.nhlbi.nih.gov/health/health-topics/topics/asb/>.
[10] "No Safe Use: The Canadian Asbestos Epidemic That Ottawa Is Ignoring." The Globe and Mail. The Globe and Mail, 14 June 2014. Web. accessed 18 June 2014. <http://www.theglobeandmail.com/report-on-business/no-safe-use-as-the-top-workplace-killer-asbestos-leaves-a-deadly-legacy/article19151351/>.

Thursday, 29 May 2014

CCSN president & CEO Jackie Manthorne's presentation at the 2014 CAPO conference!

Jackie Manthorne, President & CEO of CCSN, attended and was invited to make a presentation at the 2014 conference of the Canadian Association of Psychosocial Oncology in Winnipeg, April 30-May 2. The 2014 conference brought together interdisciplinary professionals to explore, share, learn and discuss the psychosocial aspects of cancer. CAPO’s annual conference convenes researchers, clinicians and community-based organizations from several professions, including: medical, psychiatry, nursing, psychology, social work, spiritual care, nutrition, rehabilitation medicine, occupational health and radiation oncology as well as representatives of community organizations and patient groups.

Manthorne’s presentation was entitled Issues impacting cancer survivors: Results of CCSN’s Survey. This survey, conducted in June 2013, asked CCSN’s membership about patient 

experiences with Canada’s healthcare system during and following treatment, and cancer survivorship issues.

The Survey was completed by 128 patients, survivors and caregivers diagnosed with a variety of cancers. Issues identified were divided into five main categories:

  • Post-treatment issues
  • Psychological/mental health issues
  • Changes to the family dynamic
  • Difficulties transitioning back to work
  • Financial issues
Please click HERE to access the presentation.