My C4YW experience

CURE invited Marie Ennis-O'Connor, a breast cancer survivor from Ireland, to describe her experience at the Annual Conference for Young Women Affected by Breast Cancer, held Feb. 25-27 in Orlando. Being diagnosed with breast cancer at any age is an overwhelming and frightening experience, but being diagnosed with breast cancer when you are a younger woman brings its own unique challenges. Facing a cancer diagnosis and undergoing treatment at a time when a young woman is typically focused on establishing her career, studying, dating, getting married or starting a family affects her in a variety of psychosocial and practical ways. She may feel isolated and alone as she comes to terms with fertility issues, early menopause, changing body image, maintaining a career while undergoing treatment, insurance issues and financial concerns. Now imagine a place where she can feel less alone, a place where she can share her story with other young women who understand, a place where she can empower herself with the latest information on treatment options and learn new ways to cope and move on with her life. On the last weekend in February, at the Peabody Hotel in Orlando, that place became a reality for hundreds of young women living with breast cancer. We traveled from all across the U.S. (and some, like myself, from countries further afield) to gather for the 11th Annual Conference for Young Women Affected By Breast Cancer (C4YW). We came to hear stories of survival, to become better advocates for our communities, to arm ourselves with the latest scientific research and clinical care, to attend workshops on healthy living, well-being and spirituality and above all to network and reach out to women just like ourselves. The meeting, which began as a collaboration between Living Beyond Breast Cancer (LBBC) and the Young Survival Coalition (YSC), welcomed Susan G. Komen for the Cure as a partner in 2008. Thanks to a generous scholarship program which provides grants to participants to attend the conference, I was able to be a part of this unique weekend of learning and networking. C4YW is the only international conference for women who have been diagnosed with breast cancer before the age of 45. The mission of the conference is to motivate and lend support to women whose diagnosis has had an impact on their family, friends, partners and children in a way that isn't necessarily related to that of her counterpart who was diagnosed at an older age. The conference takes place over three stimulating days of workshops, plenary presentations and fun events. These social events help women gain a sense of unity as they realize that there is a network within their individual breast cancer journey.The weekend got off to a great start on Friday afternoon with workshops covering the mind/body connection and breast cancer and the environment. Throughout the weekend, attendees had the opportunity to participate in a variety of workshops designed to promote participants' understanding of the physical, social, emotional and spiritual aspects of life with breast cancer. Some of the topics are repeated each year – healthy living, fertility, reconstruction, intimacy and sexuality being among the most popular, and new topics for this year's conference included advocacy and inclusion, survivorship care plans and creating a legacy in letters. The atmosphere on Saturday morning in the large conference room was electric as attendees gathered for the annual medical update for young women. The room buzzed with a palpable energy of enthusiasm, connection and support. For first-time attendees this can be an overwhelming and deeply moving experience as they feel a strong sense of being united in a common bond with women from all over the world. This was my second time attending C4YW, and I still got chills when women stood up in the room to convey where they were on their breast cancer journey. One of the features of C4YW is wearing a colored lei to represent where you are on your breast cancer journey and looking around the room to see those wearing the lei representing over five years of survivorship is hugely encouraging. As breast cancer survivor Olade Olayinka said when sharing her story with us, it was the point at which she realized that survivorship was a real possibility past two, three, five and more years that her entire perspective changed. We settled back in our seats for the opening plenary session with Ann Partridge, MD, a leading researcher on breast cancer in younger women, and founder and director of the Program for Young Women with Breast Cancer at Dana-Farber Cancer Institute. Dr Partridge provided us with a comprehensive update on the latest breast cancer research, commenting that the biggest strides have been made in the area of targeted treatment. Breast cancer is no longer treated as a single disease and the opportunity to individualize and target treatment is the direction research is moving toward. Dr Partridge also spoke of advances in the treatment of a particular subgroup of cancer - triple-negative breast cancer (TNBC). TNBC was well represented throughout the weekend, with an excellent workshop presented by Edith Mitchell, MD, of the Kimmel Cancer Center in Philadelphia and more information and support available at the TNBC stand in the exhibition hall. Indeed there was plenty to be learned from by visiting the exhibition hall, with more than 80 exhibitors representing support groups, apparel and organizations dedicated to young women with breast cancer. It meant a lot to me to be able to connect face to face with many of these exhibitors from whom I have been sourcing information online since the early days of my diagnosis - particularly CURE, Dr. Susan Love Research Foundation and LIVESTRONG groups. It was also wonderful to meet new exhibitors I had no prior knowledge of, and I really valued the opportunity to be able to chat with them, learn more about their work and what they do to support younger women. In Ireland we are sadly under-served with support groups and information in this area, so the information and fresh ideas I came away with will be put to good use in my own advocacy work. All too soon the weekend ended, and I had a few days to unwind with friends in sunny Orlando before heading back home. As I settled into my flight back to Ireland, I reflected on what I was taking home with me from this experience. Armed with the latest medical and scientific research, new contacts made among exhibitors and attendees and stories shared by inspirational young survivors, C4YW has empowered me to be a more powerful and purposeful advocate for younger women with breast cancer in my own community. It has also given me renewed strength and knowledge to navigate my own journey beyond breast cancer. Best of all, I know that I am not alone. I am part of a sisterhood of survivors that spans a broad spectrum of nationality, race and creed. I am reminded of the words of the Nobel Peace Prize winner and philosopher, Albert Schweitzer, paraphrased below: "Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in need obtain the same help that once came to (her). (She) no longer belongs to (herself) alone; (she) has become the (sister) of all who suffer."I feel honored to have been part of the C4YW experience and proud to be among this sisterhood of survivors. Thanks to the organizers for the opportunity to be part of this unique event. I am already looking forward to C4YW 2012!Marie Ennis-O'Connor was 35 years old when she was diagnosed with breast cancer in September 2004 and was treated with surgery, chemotherapy, radiotherapy, brachytherapy and hormone therapy. Marie has since become a passionate advocate for the issues facing younger women with breast cancer. She is secretary of Europa Donna Ireland, a patient advocacy group, whose mission is to bring the voice of the woman with experience of breast cancer to raising awareness of the need for screening and access for all women to cancer centers of excellence and to campaign for evidence-based, best practice health policy changes to ensure this happens. Marie is author of a patient information guide Younger Women, Breast Cancer and Fertility, and is editor of the award-winning blog, Journeying Beyond Breast Cancer. Marie lives in Co Clare, Ireland, with her husband Billy.