Tuesday, 9 June 2015

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.
For information or an interview please contact:
Jackie Manthorne
President & CEO
Canadian Cancer Survivor Network
613-710-3636 (cell)
Photos attached.

Monday, 1 June 2015

Take part in CCSN's important survey on Xgeva!

The purpose of this survey is to provide the Canadian Cancer Survivor Network (CCSN) with insights and perspectives about the use of denosumab (Xgeva) for the prevention of skeletal-related events due to bone metastases from solid tumours. 

The information gathered from this survey will be used in order to prepare a patient evidence submission to the CADTH Common Drug Review. Please note that your personal information is never shared or disclosed, but is used only by CCSN for input for statistical purposes.

This survey will be open until noon on June 11, 2015 to enable us to prepare our patient evidence submission on June 16, 2015.

Access the survey at https://www.surveymonkey.com/s/2CK7HD9

Tuesday, 24 February 2015

A New Patient Assistance Program For Medical Cannabis Use in Canada

One of our partners, CannTrust, a licensed producer and distributor of medical cannabis in Canada, has introduced a comprehensive patient assistance program for medical cannabis compassionate use in Canada.

Known as the CannTrust Access program, it’s available immediately to eligible Canadians whose health plans do not reimburse medical cannabis.

Qualified patients will be eligible for up to 30 grams of medical marijuana per month.  Three levels of financial assistance are available through the program depending on the patient’s income status, which will be reassessed every six months.  CannTrust anticipates that a number of patients’ financial status will qualify them to receive their monthly order at no cost. 

CannTrust Chairman Norman Paul said in a news release: “As a company founded on the principles of patient access, CannTrust took the bold step of creating the innovative CannTrust Access program with a goal of offering broad access to medical cannabis for patients in need.”

As we know patient assistance programs are common among the pharmaceutical industry as a financial support tool for cancer patients in need to treat and manage their disease.  It’s good news to learn that CannTrust believes having a limited income shouldn’t marginalize a person’s access to medicines they need. In fact, CannTrust is committed to helping make its medical cannabis available where and when it is needed most.  

Details to register are available at CannTrust.ca

Wednesday, 26 November 2014

Canadian Cancer Survivor Network launches Stomach Cancer Portal

Ottawa, ON – November 24, 2014 – For those dealing with stomach cancer, the road from diagnosis to treatment and management of the disease is a challenging, burdensome journey. Stomach cancer impacts one of our most vital organs forcing patients to undergo significant lifestyle changes, and caregivers, partners, families, friends and other loved ones 
may share in the hardship of this life-changing disease.

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

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

About the Portal

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

The portal also includes:
·         Links to blogs and websites related to survivorship 
·         Nutritional information for pre and post-gastrectomy
·         Financial information and resources
·         Stomach cancer organizations and news

In addition to the Stomach Cancer Family Portal, CCSN has established a unique Twitter page, which can be accessed @stomachcancerca

About Stomach Cancer in Canada

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

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

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

Tuesday, 25 November 2014

Canadian Cancer Survivor Network hosts Ontario Legislative Reception to raise awareness of metastatic prostate cancer

Ottawa, ON – November 19, 2014 – In the month of November focused on men’s health, the Canadian Cancer Survivor Network (CCSN) was pleased to host its third annual breakfast reception at the Ontario Legislature to highlight the challenges faced by metastatic prostate cancer patients and their families and the increasing number of treatment options that provide a good quality of life while living with this disease.

The reception was hosted by Ann Hoggarth, MPP for Barrie, followed by an overview of CCSN by Sapna Mahajan, CCSN Board member, who shared the personal journeys of important men in her life to illustrate why young women should be concerned about best treatment for prostate cancer.

Ann Hoggarth, MPP Barrie; Jackie Manthorne, CCSN President & CEO; Indira Naidoo-Harris, Parlimentary Assistant to the Minister of Health & Long-Term Care
Keynote speakers included Dr. Andrew Feifer, an urolic oncologist at the Trillium Health Partners’ Fidani Cancer Center at Credit Valley Hospital and Derek Lawrence, who lives with metastatic prostate cancer. Indira Naidoo-Harris, Parliamentary Assistant to Dr. Eric Hoskins, Minister of Health and Long-Term Care, Christine Elliott, Deputy Leader of the PC Party of Ontario and PC Health and Long-Term Care Critic and France Gélinas, NDP Critic, also offered remarks.

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

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

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

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

CCSN has also recently launched A Family Affair: Prostate Cancer Family and Caregiver Portal, an online portal recognizing and addressing the experience of prostate cancer, whether in its early or more advanced stages, as a family affair. http://survivornet.ca/en/cancer_basics/prostate_cancer_family_affair_portal.

Wednesday, 12 November 2014

InspireHealth: November is Cancer Caregiver Health Month

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

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

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

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

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

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

Friday, 10 October 2014

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

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