Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

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My Story By Lorna Marshall I wish there were a mandatory course that all physicians took to deal with cancer screening and to learn how to tell someone they have cancer. From the time I turned 40, every couple of years I would ask my GP whether or not I needed to have a mammogram. Every year it was the same response: “You don’t need a mammogram until you turn 50, especially because you have no history of breast cancer in your family.” Then, I found a lump in my breast just after turning 48 and I knew immediately that it was cancer because of its size. Did she help me with booking the mammogram after I went to her about the lump? No, I had to use a pay phone in the middle of a retail mall and make the phone call myself. Only after bursting into tears when told that it would be four weeks before I could get in did the technician feel pity for me and booked me within that week. The mammogram was followed by an ultrasound and then my doctor’s office called to ask me to come in for the results. “I’ve been told to tell you that you have cancer” are the words my doctor used. “Told” to tell me. How about, “I’m very sorry but it looks like cancer and we will need to do a biopsy to be sure.” Then when I asked if it meant I would need to have a mastectomy she responded with, “Well it depends on how attached you are to your breast.” I met with a surgeon within a week, had a same-day biopsy and when I went back to the surgeon to receive the results, he made a phone call and had me see a plastic surgeon about reconstruction. He wanted to schedule surgery in ten days and I needed to make a decision. At this point, I was walking around in a complete fog. After discussing this with my family and friends I decided that I didn’t need to rush this decision – after all the cancer didn’t grow overnight – did it? I requested to be referred to a specialist in Kelowna, one whose field was breast cancer. This delayed everything by several weeks but I was much more confident with this new surgeon and the added bonus was that I would be having my surgery in Kelowna Hospital, where the B.C. Southern Interior Cancer Center is located. After the lumpectomy, the pathology report came back with both good and bad results. My cancer was diagnosed as triple-negative, invasive and Grade III but it had not spread to the lymph nodes. Lorna and Jay Marshall In November 2008, I started my chemo cocktail. At the end of February, two days before my fifth chemo treatment, my mother who lived in Ontario had a stroke. She was 88, the primary caregiver for my father who has dementia and I am an only child. There was no question that I would have to fly to Ontario. We moved my chemo up one day and I arranged for a live-in caregiver for my father and flew there right after my session. I still don’t know how “Dr. M.” did it, but one week after arriving in Ottawa I had an appointment with an oncologist to schedule my last chemo session. What a different experience! In Nelson, we had a maximum of six people receiving treatment at one time and there was a lot of talk and laughter. Yet, here I was alone in Ottawa, and in a room with 36 strangers. I flew from Ottawa to Kelowna to commence my 20 radiation treatments. This meant that I had to live in Kelowna (350 kilometres from Nelson), for the six weeks of my treatments. Fortunately for me, I had a very good health benefit plan through the company I worked with, so the costs associated with living there were covered. Without my health benefit plan, it would have been a large financial burden on my family. In August 2008, I was told that my breast cancer had returned – it was in my sternum. The message was delivered differently this time, mainly because it came from another doctor. She called me at home to tell me, but only after she had called my radiation oncologist in Kelowna to find out where we would go from here. She was able to tell me radiation was unlikely because that spot had been previously radiated. She also told me which blood tests she would arrange and she called Dr. M. to get me in as soon as possible for chemo. I had a Portacath inserted on September 3 rd and my first chemo was on September 4 th . I did quite a bit of research and found that because I had triple negative breast cancer there was a high likelihood that I had the BRAC1 or 2 gene mutation. As this could affect my treatment, at the end of September 2008 I submitted the necessary forms to the British Columbia Cancer Agency (BCCA) Hereditary Cancer Program to request genetic testing. I was told it could take up to 18 months for the results. I decided to pay for the genetic test myself (3100.00 USD) as I wanted to be aggressive with this cancer. I had the results within three weeks and they revealed that I had a mutation but it was an “unclassified” mutation. Meaning, the genetics experts do not know what it really means or how it could affect me. I didn’t want to stop the process through the BCCA so I met with a genetic counsellor from the Hereditary Program at the end of March 2009 and she approved the genetic test but said it would likely take twelve months for me to get the results. I’m still waiting. In January 2009, we discovered that after six rounds of chemo the cancer had progressed. As a result of my research, I knew that “Dr. G.” was conducting a clinical trial in Vancouver on patients who had triple negative cancer in addition to a BRCA1 gene mutation. I met with her at the end of 8 Network News Winter/Spring 2010
January 2009 and after several scans (CT, PET and MRI), Dr. G said she would accept me into the trial. If I had not received my genetic test, I would not have been eligible for the trial. My CT scan this past September indicated that my cancer was potentially progressing. I convinced Dr. G. to keep me on the trial for another month while I had a PET scan to confirm the growth, as CT scans are not always that easy to read. Unfortunately, the cancer was growing and so I was taken out of the clinical trial. I started my third chemo cocktail on October 28 th and we are hopeful that this will stop the growth. Cancer has changed who I am. Previous to the diagnosis I was a career-driven individual who didn’t make enough time for my family, friends, or even myself. I didn’t have any time to give back to the community and now I’m proud to say I’m on the Board of Directors for the Canadian Breast Cancer Network (CBCN). I have told many people that cancer has changed my life for the better. They find that hard to believe until I explain what has happened. I now appreciate every single day, I’ll spend hours over coffee or at lunch with friends, just about all phone calls end with an “I love you,” I spend hours floating in the middle of the lake in my kayak and I’m just too busy to return to work. I couldn’t get through what I have without the unfailing support of my husband; he has been my pillar of strength. Although I know it’s a cliché, I can honestly say that this former Type A personality no longer “sweats the small stuff”. • I was born, raised and graduated from high school in Carleton Place, Ontario – a small town outside of Ottawa. After working several years in Ottawa, I decided to take a Restaurant and Hotel Management diploma program at Algonquin College. That led me to positions in Calgary and Ottawa working with the Four Seasons, Delta and Travelodge chains. A chance phone call from a friend of a friend led me to apply for a teaching position in the Resort and Hotel Management program at Selkirk College in Nelson, B.C. We have been in Nelson for close to twenty years and we love this community. I have volunteered with Relay for Life, am a breast cancer support person, and am on the Board of CBCN. My involvement with CBCN has led me to participate in a workshop in L.A. sponsored by the National Breast Cancer Coalition on breast cancer advocacy. I have just recently been hired as a novice peer reviewer with Systems and Research Applications International (SRA). SRA manages money set aside for breast cancer research from the Department of Defense in the U.S.A. Continued from Page 5 Executive Director’s Report Participants recognized and appreciated the leadership role that CBCN provided in bringing together organizations throughout the region for the meeting, and they expressed hope that the collaborative work could continue through future meetings. Western/Northern Regional Meeting The Western/Northern Regional Meeting was held in early November 2009 in Calgary. Participants from across the region were invited, and representatives from Saskatchewan, Alberta, British Columbia, Yukon, Northwest Territories and Nunavut attended. Participants included CBCN Board members, survivors, representatives from provincial and territorial breast and women’s cancer networks, representatives from regional breast and women’s cancer organizations, and representatives from other organizations interested in women’s health. One of the most exciting outcomes of this meeting was the formation of a Northern Network, consisting of Nunavut, Northwest Territories and Yukon, with the Canadian Breast Cancer Network as an additional member providing assistance and mentorship. There was also interest in creating a new breast cancer network in Alberta. The Central Regional Meeting was held in early March 2010, with representatives from Manitoba, Ontario and Quebec attending. Copies of the reports of the Stakeholder Consultation and the Breast & Women’s Cancers regional meetings are available in English and French. Contact Jenn McNeil, Project Coordinator, at jmcneil@ cbcn.ca or 1-800-685-8820 ext. 224. Order the Intimacy and Sexuality Workshop Manual and CD PowerPoint Presentation CBCN has completed its one-day Intimacy and Sexuality Workshop for young survivors, in collaboration with Dr. Sally Kydd, co-author of Intimacy after Cancer: A Woman’s Guide. A printed facilitator’s manual and a CD containing the PowerPoint are now available in English and French to organizations across Canada. Due to the nature of the material, workshops must be facilitated by qualified professionals. We are prioritizing organizations which intend to actively use the workshop with their clients. Workshops must be offered free of charge. Please send expressions of interest to Contact Jenn McNeil, Project Coordinator, at jmcneil@cbcn. ca or 1-800-685-8820 ext. 224. • Network News Winter/Spring 2010 9
Page 1 and 2: Canadian Breast Cancer Network Wint
Page 3 and 4: e part of a remarkable Board of Dir
Page 5 and 6: CBCN Board Members, staff and parti
Page 7: carry a BRCA mutation. If you would
Page 11 and 12: What is BRCA? By Dawna M. Gilchrist
Page 13 and 14: 5. Where possible, and if patient/f
Page 15 and 16: Hormone Therapy After Risk Reducing
Page 17 and 18: Knowledge is Power Interview with J
Page 19 and 20: Informing Women of the Risks and Be
Page 21 and 22: Susan Armel is the senior genetic c
Page 23 and 24: BRCA1/2 Testing: Navigating Through
Page 25 and 26: having surgery but is not currently
Page 27 and 28: the risk of hereditary cancer. A ri
Page 29 and 30: At present, we are recruiting women
Page 31 and 32: Familial Breast Cancer and No BRCA1
Page 33 and 34: ‘E’ is for Empowered - Are You
Page 35 and 36: Continued from Page 30 Top 10 Thing

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