October 10, 2014 – Canadian Cancer Survivor Network online resource recognizes unique experiences of metastatic breast cancer patients

Ottawa, ON – October 10, 2014 – In recognition of Metastatic Breast Cancer Awareness Day on October 13, 2014, the Canadian Cancer Survivor Network (CCSN) is proud to announce the launch of an online portal recognizing and addressing the experience of metastatic breast cancer at http://survivornet.ca/en/cancer_basics/metastatic_breast_cancer_1

Approximately 30 percent of women and men diagnosed with breast cancer will at some point be diagnosed with metastatic breast cancer, and while metastatic breast cancer can be treated, it currently cannot be cured.

This does not mean that those living with metastatic breast cancer cannot enjoy good quality of life! However, the needs and issues facing metastatic breast cancer patients are vastly different.

  • Breast cancer support groups are mostly composed of newly or recently diagnosed patients and those who have metastatic breast cancer often do not have much in common with them. Unfortunately, metastatic breast cancer support groups are few and far between.
  • Women and men living with metastatic breast cancer are in and out of treatment, hoping that their cancer will stop its progression so they have a decent quality of life. They need ongoing help both accessing and navigating the healthcare and cancer care system.
  • Metastatic breast cancer patients and their families need ease of connection to accurate, updated clinical information, improved access to clinical trials, and readily available psychosocial support.

During this month of October, when there is so much awareness raising of and fund raising for breast cancer research, we must not forget the 30 percent whose breast cancer has metastasized.

“It is critically important to address the information needs and concerns of those living with metastatic breast cancer,” says Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network. “Aside from purely medical considerations, the metastatic journey includes many practical decisions and adjustments. Each of these changes has the potential to impact those closest to the patient. As well, metastatic breast cancer patients often feel isolated and ignored, especially during October when they often feel that they do not have a voice in most breast cancer awareness and fundraising campaigns. We hope that our website section on metastatic breast cancer provides them a place to learn, to find resources and to share their experiences.”

About the Portal

The Metastatic Breast Cancer Portal provides a trusted and accurate source of metastatic breast cancer information, from the history of Metastatic Breast Cancer Awareness Day to Telling our Stories: living with metastatic breast cancer.

“For those of us living with metastatic breast cancer, the words ‘you’ve got cancer’ were followed by ’we’re sorry but you cannot be cured.’ When my oncologist told me this over two years ago, I had no idea I would still be here today, says Sheila Ghosh. “At my first diagnosis, my cancer had already permeated my liver so badly that my liver was failing. I had no idea that I was sick. I felt betrayed by my own body.” But after treatment, Sheila confirms that she is doing well. “I have been back at work since May 2013. I never thought I would get a job, but I did. Now I’m happy and living a full life without pain. I can even run again and I love to walk outside in the woods with my dog. I just hope that more patients can live with metastatic breast cancer the way I have these past two years. The right treatment has allowed me to enjoy every day of my life and I am now part of a wonderful community of survivors.”

CCSN’s Metastatic Breast Cancer Portal also includes sections on:

  • What makes metastatic breast cancer different?
  • Statistics and research in metastatic breast cancer
  • Metastatic breast cancer blogs
  • Bone health in metastatic breast cancer patients
  • Think before you pink campaign
  • Resources for metastatic breast cancer patients

The portal was funded through an unrestricted educational grant from Pfizer.

About Canadian Cancer Survivor Network (CCSN)

CCSN is an organization committed to developing public policy on cancer issues and increasing advocacy for optimal cancer care and follow-up. CCSN works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.

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For more information or to schedule an interview, please contact:

Jackie Manthorne
Canadian Cancer Survivor Network
613-898-1871
jmanthorne@survivornet.ca