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e-Bulletin |
News from the Canadian Cancer Action Network June 2011 |
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Message from the Chair, Liz Whamond | 
Since the release of our March 2011 e-Bulletin, this has been an extremely busy and rewarding period for the Canadian Cancer Action Network.
In recent months, based primarily on patient input provided by CCAN Members Council during the past several CCAN meetings, the board of directors and staff has been actively engaged in strategic planning with a focus on establishing both short and long-term goals for the organization.
In March, and then again in May, CCAN directors and staff participated in two planning workshops: the first to estabish strategic priorities for the 2012-2017 mandate and the second to finalize some of the planning and execution details in support of a 2011-2012 CCAN workplan, including a detailed communications and marketing strategy. As we continue to undertake new and exciting activities, CCAN remains firmly focused and committed to pursuing opportunities to provide meaningful patient input across the cancer control continuum. We look forward to continuing to provide key stakeholders, partners and valued members of CCAN with informative updates on our collective efforts to ensure a strong, unified patient voice is actively engaged. |
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Global Cancer Ambassador, Jack Shapiro | |
Jack Shapiro, Past-Chair of CCAN, recently travelled to New York City to meet with other Global Cancer Ambassadors as part of an exciting American Cancer Society initiative.
The Global Cancer Ambassadors were there to discuss their recommendations to the upcoming High-level Meeting on Non-Communicable Diseases at the United Nations this coming September. There were two recommendations discussed:
- Accelerate implementation of the World Health Organization "Framework Convention on Tobacco Control" (FCTC).
- Increase access to affordable drugs and technologies for cancer and other non-communicable diseases; increase the provision of affordable HBV and vaccines; increase access to early detection programs for breast and cervical cancer; and provision for pain relief for end of life care.
Shown from left to right are Janice Dogson (Canadian Cancer Society), Jack Shapiro, Conrad Scheck (Counsellor with the Canadian Mission to the United Nations), and Carol Loughrey (C2CC). |
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Add Your Voice to the UICC Conference! | |
The Union for International Cancer Control's (UICC) 2012 World Cancer Congress will be taking place in Montréal, Quebec on August 27-30, 2012. The Public Health Agency of Canada is a member of the UICC and has participated in past UICC Congresses.This is a one-of-a kind opportunity for the cancer control community to showcase some of the policies, projects and best-practices developed in Canada over the last few years. Ms. Jessica Hill, CEO of the Canadian Partnership Against Cancer and Chair of the Canadian Advisory Committee of 2012 World Cancer Congress has recently invited members of the Canadian Advisory Committee to share the call for proposals with their networks in order to provide input into the Congress program. We thought you would be interested in reviewing the program and providing suggestions to the conference organizers. While the programme tracks have already been selected (prevention and early detection; cancer care and survivorship; palliation and pain control; and systems in cancer control), there is still an opportunity to shape the program content by providing ideas/proposals for speakers, sessions, and sub-topics.
The deadline for submitting proposals is July 31, 2011.
Please send a copy of your proposal to:
Dr. Michel Gélinas, Chair, Host Committee for the 2012 UICC Congress at
lpronovost@fqc.qc.ca
You may submit proposals for speakers or for entire sessions in the following links:
- For speakers: http://www.worldcancercongress.org/node/9257
- For sessions: http://www.worldcancercongress.org/node/9259
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Lending a Patient Perspective | |
 On June 6th, sixteen members of CCAN Council representing cancer-site organizations, population organizations; provincial groups and the board of directors, met with the Canadian Partnership Against Cancer in Toronto, ON as a follow-up to CCAN's response to the Partnership's discussion paper, "The Future of Cancer Control in Canada."
This session, part of the Partnership's stakeholder consultation process to discuss cancer control strategic directions for 2012-2017, provided an opportunity to build on ongoing dialogue around future priorities specifically, where the Partnership is uniquely positioned to advance action and how CCAN can ensure the priorities of patient communities are reflected in future strategic directions. |
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Nothing SPEAKS like EXPERIENCE! | |
At CCAN, we believe nothing speaks quite like experience. Earlier this year, in order to capture the experiences of cancer patients, survivors and caregivers from across Canada, CCAN introduced a new section on its website dedicated to patient narratives sharing unique patient perspectives on issues relating to a cancer diagnosis.
If you (or someone you know) would like to add their voice to this important initiative, please call the CCAN office today. |
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Special Feature: CCAN Member Organizations
In this issue we spotlight two of our member organizations - one (the Carcinoid NeuroEndocrine Tumour Society Canada) representing a relatively rare and often misdiagnosed cancer, the other (Thyroid Cancer Canada) representing a cancer with increasing incidence rates.
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CCAN Member Profile:
Thyroid Cancer Canada | 
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Thyroid Cancer Canada (TCC) is a charitable group and national organization of thyroid cancer survivors dedicated to providing emotional support and information to those affected by the disease. Thyroid cancer is a disease with proportionally few research dollars and medical resources dedicated to it.
Thyroid cancer was once thought to be one of the rarest of cancers, however over the last decade the incidence rate has been rising at a faster rate than any other form of cancer (over 10%). In 2011, it is expected that there will be approximately 5,700 new cases of thyroid cancer in Canada.
The medical community has no clear answer as to why thyroid cancer rates are growing at unprecedented and significant proportions. The general population has little collective awareness of the signs and symptoms of the disease (normally indicated by a nodule in the neck area), nor is it necessarily a mandated part of the protocol of a general physical examination to palpate the neck for signs of nodules, and many patients have their disease for many years prior to diagnosis. TCC strives to bring awareness to these issues through Thyroid Cancer Awareness Month (September 2011).
Thyroid Cancer Canada benefits from the larger, universal perspective that membership with CCAN brings. CCAN offers many education and resource support opportunities in addition to the specialized focus of various committees, including the CCAN Drug Access Working Group and the CCAN Symposium Planning Committee.
Submitted by Perry Monaco |
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CCAN MEMBER PROFILE:
Carcinoid NeuroEndocrine Tumour Society Canada
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NeuroEndocrine Neoplasms represent a rare cancer that is found in the diffuse neuroendocrine system. These tumours, those benign and malignant, are generally slow growing and can be indolent for years but have usually metastasized to the liver before the patient displays any symptoms. Many exhibit no symptoms at all. These symptoms, when they exist, overlap with many other non-cancer presenting problems. So this disease is most often found by chance after five to eight years of misdiagnoses. The typical diagnostic process looks at the "most likely" causes for the patient's complaint then works through to the least likely. Because of its rarity and therefore lack of timely diagnosis, patients experience less than optimal outcomes.
While the prognosis for this cancer tends more often to be chronic than fatal, those with late diagnosis do have a reduced survival rate. For NET patients, access to different drugs and clinical treatment path options varies considerably across Canada. One significant way that CNETS Canada can benefit from its association with the Canadian Cancer Action Network is through CCAN's focus on promoting pan-Canadian equitable access to cancer drugs and clinical treatment, so the entire NET patient community can experience the best possible outcomes.
Submitted by Linda Dean |
 The Canadian Cancer Action Network (CCAN) is comprised of national cancer-site patient organizations and population organizations from across Canada representing an enormous network of cancer patients and their families. CCAN is dedicated to ensuring the patient voice is heard across the cancer continuum in order to accelerate progress in cancer control and achieve a health care system that is affordable and equitable to all Canadians. CCAN is affiliated with the Canadian Partnership Against Cancer, an independent body established by the federal government to implement Canada's cancer control strategy.
Publication of this communication has been made possible through a financial contribution from Health Canada, through the Canadian Partnership Against Cancer. The views expressed herein represent the view of the Canadian Cancer Action Network. |
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