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.

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
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.
For more information or to schedule an interview, please contact:
Jackie Manthorne                                                                                           
Canadian Cancer Survivor Network

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 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

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 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 affair
"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 and a community blog 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.
For more information or to schedule an interview, please contact:
Allison Goodman
energi PR
416-425-9143 x18                                                              
Jackie Manthorne                                                                                           
Canadian Cancer Survivor Network

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 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:

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.


[1]"Asbestos Mine Was Not An Issue in 2014 Quebec Election." Asbestos Facts Canada. Asbestos Facts Canada, 11 May 2011. Web. 18 June 2014. <>.
[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. <>.
[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. <>.
[4] "Health Risks of Asbestos." Health Canada. Government of Canada, 14 Oct. 2012. Web.  accessed 18 June 2014. <>.
[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. <>.
[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. <>.
[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. <>.

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.

Oncology on Canvas launches in Canada!

Jackie Manthorne, CCSN President & CEO and Joan L. Bottoroff, President of the Canadian Association of Psychosocial Oncology at the launch of Oncology on Canvas in Winnipeg on May 2nd.
Some see art. Others see hope. What do you see?

“You have cancer.” To an estimated 500 Canadians a day, their family, friends and caregivers, these three words change lives. To help Canadians manage through a cancer diagnosis, Eli Lilly Canada is launching Lilly Oncology On Canvas Canada, an art competition that honours the physical and emotional journeys Canadians face when dealing with cancer.

“A cancer diagnosis can be just as emotional as it is physical,” says Dr. Joan Bottorff from the Canadian Association of Psychosocial Oncology. “It’s so important to provide opportunities for people who have been touched by cancer to share their feelings. It can really make a meaningful difference in someone’s ability to understand and deal with the realities of a cancer diagnosis.”

Individuals who are, or have been diagnosed, with any type of cancer — as well as their families, friends, caregivers and healthcare providers — are invited to express the life-affirming changes that give their cancer journeys meaning through art and narrative. The deadline for entries is September 30, 2014. Additional information about the competition, including how to enter, can be found

“Cancer survivors and those close to them have powerful stories to tell,” says Jackie Manthorne, president and CEO of the Canadian Cancer Survivor Network. “We’re thrilled to be part of an initiative that can bring inspiration and understanding to so many through the power of art.”
The Lilly Oncology On Canvas Canada art competition is presented by Lilly Canada’s Oncology team, the Canadian Association of Psychosocial Oncology (CAPO) and the Canadian Cancer Survivor Network (CCSN). Oncology On Canvas was launched in 2004 by Lilly Oncology to help those affected by cancer cope with the emotional side of the disease. Winners’ prizes consist of donations made to the cancer charities of their choice.

“In the United States, this competition has been helping people living with cancer and their supporters for ten years,” says Nathan Hubbard, Eli Lilly Canada Oncology Business Unit lead. 
“We’re excited to bring this competition to Canada for the first time and provide an opportunity for Canadians to share their journeys and draw from others who share their stories with us.”

Entries will be shared online at as well as on Twitter and Pinterest.

More about the Lilly Oncology On Canvas Canada art competition

The Lilly Oncology On Canvas Canada art competition is open to residents of Canada who have reached the age of majority in their province or territory of residence as of September 30, 2014. Entrants must select the category that best describes their cancer journey - person diagnosed with cancer; family member, friend or caregiver; and healthcare professional – and the type of original artwork they are submitting: painting (acrylic, watercolor, oil, pastel), photography, or mixed media (a combination of two or more media). Artwork must be accompanied by a narrative of 125 words or less.

Winners in 15 categories will be chosen by an independent panel of judges selected by CAPO and CCSN.

Prizes consist of donations to cancer-related charities selected by the winners, ranging from $250 to $2000.

For further information about Lilly Oncology On Canvas Canada visit You may also call 416-515-7517 ext. 350 or e-mail

Follow Lilly Oncology On Canvas Canada on:
Twitter (
Pinterest (

Friday, 25 April 2014

What do cancer patients want?
By Jackie Manthorne
Presented at the Economic Club of Canada
April 14, 2014

Thank you very much for your kind introduction. And I would also like to thank all of you for attending today! I was hoping that Toronto wouldn’t be having a blizzard and that we all wouldn’t be sporting boots, parkas and tuques! Last week I was in Gatineau, where there was sleet, Vancouver and Victoria, where it was warm and the cherry blossoms were blooming and the trees were green, on to Edmonton, where it was warm but damp, and finally to Calgary, where the wet snow was temporary, so my sense is that right across the country, spring is finally emerging from our long, cold winter!

What do cancer patients want? Those of us working and volunteering at the Canadian Cancer Survivor Network strongly believe in the mantra “Nothing about us without us;” after all, patients, survivors and caregivers are the experts: they are living the cancer journey. So the first step in finding out what patients want is to ask them and then listen closely to their responses so we can work with them to find solutions to issues they identify as important to them. More often than not, these issues pinpoint gaps in our healthcare and cancer care systems.

Last year the Canadian Cancer Survivor Network conducted a members’ survey in which we asked what patients want, and much of what I am going to talk about today is what they responded and the conclusions we can draw from these responses.

Overall, patients told us that they were concerned about:

·         The physical side effects of treatment and surgery and psychosocial or mental health issues.
·         Changing family dynamics.
·         Financial issues and difficulties transitioning back to work.
·         Fear of cancer spreading or coming back.

The physical and mental side effects of treatment are wide-ranging and are the primary concern of cancer patients and survivors.  Survey respondents reported many physical side effects from their treatment and surgery.  These include lymphedema, facial and intestinal reconstruction, neuropathy, and other debilitating physical issues. Pain resulting from nerve damage, scar tissue, and surgery is a continuing issue for many patients and survivors.

Patients told us:

·         “I had a significant defect on my face from reconstruction, so dealing with seeing it every day was tough.” 
·         “Chemobrain. I mean, memory issues, difficulty sequencing. Not being able to keep up with others.”
·         “Fatigue.”
·         “Impotence and incontinence after prostate cancer treatment.”
·         “Radiation caused rib pain for two years.”
·          “I developed neuropathy which I would like to go away.”
·         “I had bladder cancer, and incontinence is an issue I have had to face; although I understood that this can happen after treatment and surgery, it is hard to face day after day.”

Mental or psychological side effects patients told us about include:

·         “I struggle with body image issues after my mastectomy.”
·         “Fear of dying before my children grow up.”
·         “It is generally thought that once you have completed treatment and a certain time has passed, you are now ‘cured.’ There is little understanding of the fear and anxiety that every survivor feels that it could return.”
·         “Fear, stress and isolation.”
·         “I became the problem; I am no longer seen as a problem solver by my children.”
·         “It's a strange world when you're 30 and anyone else you've known that's had cancer is dead.”

Some patients reported seeking help, but many reported working through these and other psychological issues on their own, with family and friends, or in cancer support groups.

Lymphedema, or swelling in the arms or legs, is a serious and frequent concern among cancer patients and survivors. It can occur right away, or years after treatment ends.  Aside from the physical problems it creates, it is also a barrier to returning to work and the cause of additional costs, since government coverage of sleeves is uneven across the country, and patients without a health care plan must pay for physiotherapy, and those with plans often max them out before year end.

One patient who responded to our survey said, “The health care system should be paying for my lymphatic drainage massage. It is very costly, approximately $90 an hour, and now I'm on CPP disability and simply can't afford it. Yet, I need it! There is no financial support for treatment of lymphedema and this is so unacceptable.”

An Ottawa friend who subsequently died from metastatic breast cancer had such severe lymphedema in her left arm that it would pull her off a chair if she casually bent to pick up something on the floor without thinking about it and planning her movements first. Another patient in Montreal suffering from cancer of unknown primary developed lymphedema in both legs and was no longer able to go to her office to work; luckily, she was able to work from home, although she was in constant pain, and her income was reduced.

How can we help patients deal with the physical side effects of treatment and surgery and psychosocial or mental health issues?

CCSN has been speaking to politicians and other decision-makers about establishing rehabilitation services for all cancer patients and survivors suffering from lymphedema and other ongoing side effects, no matter when they occur in each patient or survivor’s cancer journey. Heart attack and stroke patients and those receiving joint replacements receive rehabilitation to help them recover, get back to work, and go on with their lives. While some patients in our survey reported receiving some rehabilitation services post-treatment, most did not. Without similar services for cancer patients, ongoing side effects from surgery and treatment may continue to impede total recovery.
Most patients reported a sense of abandonment once their cancer treatment ended:

·         “I am having to deal with the loss of the people and trust that was there while everything was being done from the very beginning and to the last day of radiation.”
·         “The 'safety net' was gone once I stopped all the visits to the specialists.”
·         “Once treatment was finished, I was on my own, working with my family doctor. If I had any issues regarding the cancer or problems from treatment, I would always ask myself, how much does a family physician know about cancer? I was always thinking that hopefully, he knows what he is talking about!”

This strong feeling of abandonment among cancer patients is so widespread that the Canadian Cancer Survivor Network has been discussing the feasibility of continuing cancer patient navigation post-treatment with provincial politicians and other decisions makers. This would enable patients, survivors and caregivers to access information, services and help from cancer experts whenever they need it.  Ongoing cancer navigation should also help prevent the late diagnosis of recurrences and metastasises and result in a better quality of life for survivors who still suffer from treatment side effects.

Another important issue that patients have identified is changes in family dynamics.

Our survey is not the first to bring to light the physical ramifications of cancer treatment on sexual function and intimacy, which may cause additional mental health issues.  Body image issues are cited, as are emotional distance and in some cases separation from spouses or partners. Respondents cited loss of intimacy and the ability to fulfill a partner’s needs as a frequent side effect of treatment:

·         “I have trouble feeling close to my spouse at times, and I feel no sexual desire.”
·         “My husband became physically distant. He was very helpful and always supportive but we never made love after the chemo. Now, nine years later, it is okay.”
Several patients reported that their relationships ended as a result of their cancer.  Partners were reportedly unable to deal with the challenges and left because of the loss of intimacy, or cheated on the cancer patient or survivor. These occurrences were linked to a sense of isolation and depression. Relationships with children, parents and other family members sometimes changed as well.

·         “One child wanted to help me, but he was physically affected by stomach pain and worried a lot. The other child could not cope to see me so ill and went to live with his father for a while. My partner seemed supportive; however, he went off to have an affair with someone who was very well endowed. We are no longer together.”
·         “I was a single mom wishing to spend more time with my adult child. She was afraid she may contract cancer and shunned me. She had difficulty being around me and seeing me vulnerable.”
·         “Three days after diagnosis, my boyfriend left as he ‘couldn't handle it.’ I found people didn't know what to say to you or they expected you to be back to 'normal' when you are feeling anything but normal.  And when I was concerned about a recurrence, my mother unintentionally said some damaging words that put a strain on our relationship for a while.  She just didn't know what to say, and told me ‘well, at least you've lived a good life.’ I was 36!”
However, the effects of cancer on patients’ relationships with the partner and family can also bring people closer together. Many patients also reported that their relationships had improved post-diagnosis, with families being drawn closer together and priorities made clear. Some patients who had suffered a broken relationship reported that their new relationships were stronger than their previous, broken relationships.

·         I think my family is valuing me more.”
·         My husband and I have always been close, but we are even closer now, realizing that life is short.  Little things no longer bother us.”
·         “We are more open and honest about everything:  health, emotions, love and well-being. It has created a close bond between me and my entire family.”
·         Got divorced. But got a new partner. Life improved greatly.”
·         “We are a lot closer and tell each other "I love you" on a daily basis.”

Again, access to continuing cancer patient navigation services would enable patients, survivors, caregivers and family members to deal with not only the ongoing physical side effects of cancer surgery and treatment, but also the psychological issues and adjustment to changed family dynamics and the “new normal” patients and their families experience.

An additional concern expressed in our survey of members relates to financial issues and difficulties transitioning back to work.
The Canadian Cancer Society, Manitoba Division and the Canadian Cancer Action Network’s study entitled Five-Year Action Plan to Address the Financial Hardship of Cancer in Canada: A Call for Action was the most recent of several studies of financial issues experienced by cancer patients.[i]

Study findings included the following:

“Nine out of ten Canadian families touched by cancer reported some form of financial challenge as incomes declined and household costs rose. For some, a cancer diagnosis started a financial tailspin that pushed ordinary people over the edge, resulting in debt, distress, bankruptcy and even a lifetime on social assistance.

“What emerged in this study was a consistent picture of financial hardship caused not by a single challenge but rather a combination of factors that created a perfect storm as sick leave and vacation time was used up and costs increased because of day-to-day living costs and unforeseen expenses from drugs and medical equipment to child care and travel increased. Surprisingly, parking costs at treatment facilities were more than a minor irritant, they were a major expense.

The report went on to say that, “These issues are compounded by a third factor:  A lack of awareness and a false sense of security have left Canadians unprepared to deal with these challenges, both as individuals and as a society. Most Canadians do not know that a cancer diagnosis has caused some people to declare bankruptcy, lose their homes, lose all of their savings, make less than optimal treatment decisions or become dependent on taxpayer-funded programs for the rest of their lives. Until cancer comes into their own lives, they believe the myth that all health care is free. Most never imagined that they could face such difficult challenges at such a vulnerable time of their lives. The reality comes as a shock to many.”  
This shock and frustration was voiced by many patients who responded to our survey:

·         “I had complications and multiple surgeries, which had me off work for three years. I was single, self-employed and had previous employment doing physical work as a home support worker. I had no money coming in and had to spend my savings to live for three years.”
·         “I received a very small amount of medical financial assistance from the government.  I needed to have it supplemented by asking friends and family for assistance, as what the government paid wouldn't even pay my rent.  The government then said I could not receive 'any' funds if I was receiving assistance privately.”
·         “Even when you have a job and benefits, you still take a big hit financially, especially if you are the only wage earner. A lot of us have difficulties making ends meet while working, and when your salary is cut even further, it’s a major juggling act.  Also, after cancer the cost of medications are very expensive. If there are changes made in your life that affects your medical plan, you are basically screwed and have to pay for your medications. Again, another juggling act. Do I take the medication and let other things slide, or take the chance that I will get cancer again if I don't take the medication? In the end you still end up with financial difficulties.”

A recent Léger survey fielded by the Canadian Cancer Survivor Network also shed new light on the striking financial, decision-making and emotional burden the disease puts on cancer patients and their caregivers. 301 cancer patients and 201 caregivers participated in this survey, making it one of the largest caregiver surveys that we are aware of and providing new and important information on the role of caregivers in their loved ones’ cancer journeys. In fact, caregivers reported more difficulties in accessing treatment and necessary medications, difficulty finding flexible work options and loss of salaries than patients, which clearly points to caregivers’ role as cancer care navigators and managers. While one in five patients experienced difficulty in finding flexible work options while battling cancer, nearly one half of caregivers struggled to integrate care for loved ones into their work schedules, making the management of the disease and their income very challenging.

As such, the Canadian Cancer Survivor Network strongly recommends that caregivers, who reported receiving no significant outside help other than from friends and families, should not be left to fend for themselves. Caregivers should join patients in the centre of the circle as we move toward defining and implementing patient-centered care.

And to add insult to injury, Employment Insurance Sickness Benefits last only 15 weeks, certainly not long enough for someone going through cancer treatment, and Canadian Pension Plan Disability Benefits are extremely difficult to access. CCSN will continue to raise awareness among decision makers of this gap in our social support system and to push for change so that cancer patients are not cut off EI Sickness Benefits in the middle of treatment, and often forced to return to work before they are ready.

Return to work was often a struggle:

·         “I made the transition back to work, but it was an effort. My employer tried to reduce my hours from a full-time to part-time job.”
·         “I had a very slow recovery due to high doses of chemo. I was let go from my job as I could not return to work full time in six weeks.”
·         “The resulting lymphedema in my left leg due to tumour removal has limited the time I can spend standing. I can now work as a teacher only part-time instead of full- time.”
·         “When I went back to work, my manager promoted a junior above me in case I got sick again. I left that place of employment but never found another place I enjoyed as much.”

Financial issues identified by patients also include lack of timely access to drugs and medications as well as the cost of drugs already alluded to above.

When you are diagnosed with cancer, you want timely access to the best medicines to stop your cancer in its tracks, to prevent it from recurring, and to stop it from spreading.  If it has spread, you want immediate access to the best medicines to stop it from progressing and to maintain pain-free quality of life.

But depending on where you live in this country, you may not have timely access to the best medicines, and even if you do, you may not be able to afford them!

The Léger survey revealed worrisome gaps in access to drugs: one in six patients and nearly one-third of caregivers reported difficulty in accessing current or effective treatment options and reimbursement of drug costs. And over one in 20 patients and one in five caregivers experienced difficulty in accessing medicine, When you translate this into the number of Canadians who are likely to develop cancer in their lifetime – two in five, according to the Canadian Cancer Society, we are talking about thousands of people who have difficulty accessing cancer meds every year.

One patient who responded to our survey of members said this: “Make all cancer drugs available. Some are not available even though they have been shown to be beneficial. Also new drugs are often not funded and are slow to enter the system. These drugs are too expensive for most people to afford. The alternative is to die. Think of that if you can.”

Why is this so?

One reason is the long and winding road of drug approval in Canada, starting with Health Canada and proceeding through either the pan-Canadian Oncology Drug Review or the Common Drug Review and continuing through each province and territory, with the addition of the Council of the Federation’s Pan-Canadian Pricing Alliance.  Creating solutions to the long delays in drug approval is beyond the scope of this talk, but there is certainly an unacceptable delay in accessing new medicines, often years. It is unclear what consequences these long wait times for access to new drugs have on patients. Are some patients not receiving the gold standard of treatment compared to patients in other countries? Certainly there are no safe wait times for patients living with metastatic cancer.

A second reason for access difficulties experienced by patients is the fact that healthcare is a provincial/territorial responsibility, and public coverage of any given cancer drug (or any prescription drug, for that matter), varies from province to province – a postal code lottery of drug access. What is available in one province may not be in another, despite the fact that the drug in question has been approved for use in Canada. Or, it may be available under the formulary in one province but not in another.

Making cancer medications available and affordable to all Canadians is not only fair, it also makes economic sense.  I might add that we are working on this issue in coalition with our over 40 partner groups as well as stakeholders in other chronic disease organizations.

Overall, survivors face difficulty with the loss of healthcare interactions, returning to work, and affording treatment costs.
·         Regardless of their experience with treatment, the sentiment of abandonment by the healthcare system or lack of post-treatment care was widespread.  The most common example given was lack of access to healthcare professionals post-treatment.
·         Many patients, survivors and caregivers expressed a desire for additional support in paying for drugs and other treatment-related items (i.e. lymphatic drainage massage, PSA testing, needles).  There was a sense of annoyance at the lack of or insufficient funding for survivors.
·         Barriers to returning to work were primarily physical – fatigue, lymphedema, or other side effects of surgery or treatment.  Some survivors also said that they were forced to leave their jobs due to cancer-related fatigue or complications.
·         Depression, anxiety, isolation and other mental issues were also identified as barriers to maintaining to a normal life, work, and functional relationships and family life.
·         Some patients had positive experiences returning to work or working through their treatment, but companies were identified as making efforts to ensure that the survivor was able to come back to work.

I have made suggestions about how some of these issues can be better dealt with by our healthcare and cancer care system, including making ongoing, lifelong cancer navigation available post-treatment to patients, caregivers and families and re-visioning recovery from cancer and the side effects of surgery and treatment as a rehabilitative issue.

The Canadian Cancer Survivor Network 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.

We invite you to join us in this work.
Thank you.