Network News - Winter 2009/2010 (PDF 3.7Mb - Canadian Breast ...

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The Class of 1993 and the Birth of the Canadian Breast Cancer Network In March of 1993, I commenced my own personal journey with breast cancer. Like others who have undergone this diagnosis, it was a huge initial shock. Next was my path to recovery, both physical and emotional, but that would take some time. Here’s where the stars (or fate) aligned. Also in 1993 the National Forum on Breast Cancer was being held in Montreal. I was visiting my dermatologist about a lesion on my finger and he asked me if I had heard of the Forum. He gave me the pre-conference material. I reviewed the information, made some phone calls and, as a result, was invited to the Forum. It became a burning passion to learn more about the disease. A room full of women were meeting during the Forum to discuss the formation of a national network of survivors. I was too sick to attend the meeting; I was undergoing chemotherapy but I certainly was interested. Upon my return to Fredericton, I again made some phone calls and was invited to planning meetings to develop this network. I felt fortunate to be the New Brunswicker at the table. There were many organizing committee meetings held in various parts of the country. I remember being in Toronto, Vancouver, and Halifax. If passion could eradicate breast cancer, the brave women at the core of the organization would do so. Some of these women were either very ill or would later succumb to the disease. Many are still alive and well. The Chair of the network was Mary Drover, a writer from Saskatchewan. Mary was a wonderful woman; bright and funny yet unassuming, and already suffering from advanced disease. She was diagnosed at 35 and at 45 she was quoted in Survivor’s in Search of a Voice: The Art of Courage as saying “Cancer made me an activist. I was given my diagnosis in a crowded emergency room – then left in the dark.” Mary died in the late 1990s. By 1996, it was clear that Mary needed to forgo the leadership of the organization. Several women suggested that I take on the role and, rather naively albeit reluctantly, I agreed to do so. Our first Executive Director (hired on a part-time basis in 1996) noted that our articles of incorporation stated that the leadership position be that of President and that was the title I assumed. What can I tell you about those beginning years? There was virtually no money for operations. Health Canada gave us a $70,000 grant and this was used to fund meetings from coast to coast to grow our Network. I spent what seemed like hundreds of hours on the phone, often very late at night, discussing our burgeoning network with our Board. It was tough work; there was laughter and tears. Over the next couple of years, there were three meetings with Federal Ministers of Health. At our meetings we requested funding support for the breast cancer survivor network (CBCN), inclusion of survivors in the Canadian Breast Cancer Research Initiative (now the Canadian Breast Cancer Research Alliance), a postage stamp and inclusion of lay participation on National Cancer Institute of Canada (NCIC) scientific review panels. Over the course of two Liz Whamond, Past President, CBCN Vice Chair, Canadian Cancer Action Network Several members of CBCN’s Board of Directors circa 1998, including Karen DeKoning, Catherine Tolton, Iona Crawley, Mary Rogers, Eva Bereti, Robin Moore-Orr years these goals were achieved except for the issue of a postage stamp and an actual vote as participants to the NCIC review panels. To this date, no progress has been made on either front and I feel it’s important to revisit those two items. Advocates in the United States have voting rights at the table of the Department of Defence Breast Cancer Research Project (BCRP) Review panels, and the United States has had at least two breast cancer stamps issued. During the intervening years, we have seen some improvement in survival rates but no fewer diagnosed with the disease. New and novel treatments bring the hope of a disease that is at least controllable as a chronic disease, if not curable. Early diagnosis has seen me raise all of my children to adulthood. Perhaps my granddaughter will some day benefit from the global work in the breast cancer arena. Really this article is meant to be a tribute to the women who founded the Network and those who struggled to fight to keep the dream alive and relevant. There are simply too many to be individually named here. All did outstanding work. Under the very capable leadership of other President’s and the CBCN Executive Director (Jackie Manthorne), the organization has grown and flourished. But there is no less need for the network today than there was back in 1993. • 6 Network News Winter 2009-10
Christmas Appeal By Mona Forrest Donors are important partners at CBCN, in good times and in bad times. In good times, individual donors enable us to pool funds to develop services or resources directly requested by survivors and patients. You know these are not always the same projects that are favoured by priorities of government and foundation funders. In bad times caring donors stretch to keep funds flowing to keep services flowing to breast cancer patients and survivors. If you attended the National Conference for Young Women Living with Breast Cancer, called the office after a diagnosis looking for resources in your area, researched our website for groups or resources of all kinds (60,000 people a month do!) or receive our newsletter Network News, you know the importance of these projects. If you are on our Outreach list for breaking news and participate in advocacy or project advisory committees, if you have participated in one of our Webinars on the latest in research, you know the importance of these services! Be a partner in funding them now! Join our caring, compassionate and smart donors who continue to invest in support and advocacy for breast cancer patients and survivors. By cheque, credit card, or monthly automatic donations, CBCN makes it easy to give: • Cheques: Make out to CBCN and send to 300 Cooper Street, Suite 331, Ottawa ON K2P 0G5 • Credit card: Call us at 613-230-3044 Extension 225 or toll free at 1-800-685-8820 • Credit card or monthly automatic donations can also be made through the secure website CanadaHelps.org CanadaHelps.org allows options to give in memory of a loved one, to send a gift card in your name, or to chose which services you want to fund, and your receipt for income tax purposes immediately comes electronically. Thank you from Executive Director Jackie Manthorne and breast cancer survivors in Canada! • Memories of CBCN By Eleanor Nielsen The Canadian Breast Cancer Network is a symbol of the determination and persistence of the breast cancer community – no obstacle is too great, once a goal is set! I had the good fortune to start my job at the National office of the Canadian Cancer Society in the early ‘90’s around the time the Canadian Breast Cancer Initiative was launched. Part of the launch was the first national conference that included survivors in equal proportions to researchers, clinicians and voluntary organizations. It was a landmark event – setting the stage for various components of phase I and II of the Initiative. A high priority for survivors was improved information sharing and networking across the country. A role the CBCN, in cooperation with the early Breast Cancer Information Exchange Projects and other cancer organizations, has played ever since. CBCN has influenced many positive changes we currently consider routine in cancer care. This often involved lengthy consultation meetings where it was always important to hear from a range of voices. Sometimes there were celebrations; one in particular that was memorable to me, was held in The Imperial Room of the Royal York Hotel. I walked in the door and broke out in goose bumps. The only other time I had been in that room was the night before my mastectomy when my husband took me there for dinner and dancing. And I had completely forgotten the whole thing! The road to 15 years hasn’t always been easy. Some years funding uncertainties made sustainability a challenge. But those involved with the Network didn’t give up. As the saying says “When the going gets tough, the tough get going,” and the Network responded with creativity and imagination. So the CBCN’s 15 th anniversary deserves to be celebrated. The many Continued on Page 9 Network News Winter 2009-10 7
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Page 3 and 4: The people involved in the SAN exte
Page 5: Canada on the Economic Impact of a
Page 9 and 10: other with only the slightest glanc
Page 11 and 12: NEW SURVEY FINDS RECURRENCE IS THE
Page 13 and 14: program will be a multi-year proces
Page 15 and 16: of Directors, 2005 Young survivors
Page 17 and 18: pop-culture diva. She grew to love
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Page 21 and 22: Richard Robinson’s successful “
Page 23 and 24: Controversy about Mammography Scree
Page 25 and 26: Thank you to CBCN 2009 Online Aucti
Page 27 and 28: Continued from Page 24 Controversy

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