Increased melanoma diagnoses basis for new Melanoma Portal

Ottawa, November 3, 2015: The Canadian Cancer Survivor Network is pleased to announce the launch of its newest website portal on melanoma at http://survivornet.ca/en/cancer_basics/melanoma_portal.

Approximately 6,500 Canadians are diagnosed with melanoma annually, and this number increases every year.  For those dealing with this type of 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) recognized the heavy burden a diagnosis melanoma places not only on those who are diagnosed with it, but on their families and extended support networks. In response, CCSN has created an online portal recognizing and addressing the experience of melanoma, whether in its early or more advanced stages.

"It is critically important to address the information needs and concerns of melanoma patients and their families,” said Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "Each patient will have his or her own experience of melanoma. 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 them. 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 melanoma diagnosis.”

About the Portal

The Melanoma Portal provides a trusted and accurate source of melanoma information – and connection. Like the spokes of a wheel, sections on the portal centralize information on the diagnosis and treatment of melanoma, provide information and resources on financial planning and address the issues that caregivers face.

The portal includes the following sections: 

•         About Melanoma
•          Prevention
•          Risk factors, Signs and Symptoms
•          Diagnosis
•          Treatment of Melanoma
•          Living Well with Melanoma
•          The Side-Effects of Treatment and Melanoma
•          Mental Wellness
•          Caregiving
•          Financial Information and Resources

 Social media platforms including a melanoma Twitter account, @melanomacan as well as the Canadian Cancer Survivor Network’s general Twitter account, @survivornetca .

About the Canadian Cancer Survivor Network

The Canadian Cancer Survivor Network (CCSN) works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer. CCSN encourages and conducts research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.

This website portal was made possible by the generous funding of Merck. 

Ottawa Mayor Jim Watson proclaims National Cancer Survivors Day

This morning, Ottawa Mayor Jim Watson proclaimed National Cancer Survivors Day in recognition of the nearly one million cancer survivors living in Canada today. This annual celebration of life took place at City Hall in the presence of representatives of the Canadian Cancer Survivor Network and Prostate Cancer Canada Network Ottawa.

On National Cancer Survivors Day and the days following, thousands of cancer survivors and their families and supporters gather across the globe to honour cancer survivors and to show the world that life after a cancer diagnosis can be fruitful, rewarding and even inspiring. It is also a time to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.

Mayor Watson stated that “a cancer survivor is defined as anyone living with a history of cancer – from the moment of diagnosis through the remainder of their life; there are nearly one million cancer survivors living in Canada today.”

While early diagnosis and improvements in treatment have resulted in cancer patients living longer, much remains to be done to ameliorate the physical, emotional, and financial effects of cancer on survivors as well as including cancer survivors in decision-making on issues which affect them within Canada’s cancer care and healthcare system.

The Canadian Cancer Survivor Network (CCSN) works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.

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For information or an interview please contact:

Jackie Manthorne
President & CEO
Canadian Cancer Survivor Network
613-898-1871
613-710-3636 (cell)
jmanthorne@survivornet.ca

Photos attached.

 

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.

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

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/>.

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.