New cervical cancer portal provides essential information for Canadian women

Ottawa, December 10, 2015: The Canadian Cancer Survivor Network is pleased to announce the launch of its newest website portal on cervical cancer.

Approximately 1,050 Canadian women are diagnosed with cervical cancer 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) recognizes the heavy burden a diagnosis of cervical cancer places not only on women 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 cervical cancer, whether in its early or more advanced stages.

"It is critically important to address the information needs and concerns of women diagnosed with cervical cancer and their families,” said Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. "Each woman will have her own experience of cervical 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 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 cervical cancer diagnosis.”

About the Portal

The Cervical Cancer Portal provides a trusted and accurate source of information and resources. Like the spokes of a wheel, sections on the portal centralize information on the diagnosis and treatment of cervical cancer, provide information and resources on financial planning and address the issues that caregivers face. It also provides detailed information that the HPV test for cervical cancer is more accurate than the Pap test in that it detects cancer risk earlier and prevents more deaths than the Pap test.

The Cervical Cancer Portal includes the following sections:

• Cervical Cancer Screening: the HPV and Pap test
• HPV and cervical cancer risk factors
• Diagnosis of cervical cancer
• Cervical cancer treatment
• Living well with cervical cancer
• Caregiving and cervical cancer 
• Financial information and resources

Social media platforms including a cervical cancer Twitter account, @cervicalcanca, 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 support of Qaigen.

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For additional information or interviews:

Jackie Manthorne, President & CEO
Canadian Cancer Survivor Network
1-613-898-1871
jmanthorne@survivornet.ca

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. 

October 13th is Metastatic Breast Cancer Awareness Day!

This October 13th, during breast cancer awareness month, CCSN recognizes the unique experience of metastatic breast cancer patients. 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.”

This website section can be accessed here.

It includes information 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

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.

 

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

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