Issue 19 February 2014

Reach to Recovery International - RRI Reach to Recovery International is committed to improving the quality of life for women with breast cancer and their families. Message from Cathy Hirsch President of Reach to Recovery International

We preface this edition of Bloom the process of building a family may find to increase awareness of the issue and with sad news. It is with deep regret their dreams derailed by infertility, which to develop programs to help defray that we report the passing of the often accompanies cancer treatment. costs and provide emotional support. Honorable Jan Steyn, husband of In this edition of Bloom, we examine Reach to Recovery International’s the issues faced by survivors who hope Ashley Koenings and Jamie Hill, also of immediate past president, Ann Steyn. to have children after breast cancer. LIVESTRONG, address more specifically In this issue, we pay tribute to a truly the work being done by LIVESTRONG remarkable and accomplished man. There are a number of options Fertility and recount one of the available to those affected by infertility, organization’s many success stories. Breast cancer represents a major ranging from traditional adoption to interruption to any patient’s life. First surrogacy to making use of an egg or Up to seven percent of Australian comes the shock of diagnosis and embryo bank. Gwendolyn P. Quinn, women who are diagnosed with early the inevitable anxiety and fear. Once Ph.D., of the Moffitt Cancer Center stage breast cancer are under the age the diagnosis is absorbed, a flurry of provides a comprehensive overview of 40, and Breast Cancer Network activity follows: scheduling medical of the various alternatives and offers Australia is addressing the need to appointments; learning about surgery advice for patients to determine educate and support young patients and treatment options; weighing those which option is best for them. who may be facing fertility issues. BCNA, options and making decisions; notifying in collaboration with the University relatives, friends, and co-workers of LIVESTRONG Foundation works of New South Wales, has developed plans; making logistical arrangements so extensively with young adults who were a booklet to provide young patients our lives and those of our loved ones can diagnosed with cancer during their with clear and current information go on with as little disruption as possible. reproductive years. Emma Marquez, about cancer treatment and fertility. Then come the endurance tests of LBSW, and Anne Marie Norman of surgery and treatment. For most of us, LIVESTRONG report that more and Although uncommon, it is not unheard treatment does eventually end and, if more oncologists raise fertility concerns of for a woman to develop breast cancer we choose to do so, we can pick up our with patients prior to treatment, so that while pregnant. Understandably, such lives where we left off. Others, however, patients have the option of preserving an untimely diagnosis would create in cannot easily resume the lives they had gametes before fertility is affected. They the patient a great deal of confusion expected to lead. Young survivors who explain that LIVESTRONG Fertility and and conflict about treatment choices. have yet to start a family or are still in other leaders in the field work tirelessly continued on p. 3

Contents 04 Jan Steyn Remembrance; 09 2014: Galvanising efforts to Alternative Family Building achieve the World Cancer Options for Cancer Survivors Declaration Targets 05 Blind Faith – The Story of My Two 10 Scars with Blessings – Extending Beautiful Daughters My Dreams with Powerful Love 06 Fertility Preservation: Finding 11 Emerging international directions Hope for Building a Family in psycho-oncological care. 07 Personal story: Luba Osinceva; Supporting women affected by Breast cancer information and breast cancer with pregnancy and support – pregnancy, fertility, fertility issues young women and more 12 LIVESTRONG Fertility Program 08 Making fertility decisions after 13 A performancelife e.V. – empathy breast cancer; “Um Balão, Uma for and solidarity with people Vida” (A Balloon, a Life) suffering from cancer 14 Global Kitchen

Email your bloom submissions! Email your bloom submissions! The theme of the next edition will be Returning to work after cancer. Submissions close 18 April 2014. Please send submissions in Microsoft Word format with any photos to [email protected]

Reach to Recovery International is a program of the Union for International Cancer Control and is administered by Cancer Council Queensland.

Bloom is published by Reach to Recovery We respectfully acknowledge International. Contributions to Bloom are welcome, the Indigenous women of our please email [email protected]. global community, the traditional For more information about RRI, go to custodians of our environment. www.reachtorecoveryinternational.org. 02 Message from Cathy Hirsch continued from p. 2

Breast Cancer UK reports in this (UICC), updates us on the refreshed World edition of Bloom that it has developed Cancer Declaration that was launched web-based text and fact sheets in November 2013 at the World Cancer specifically tailored to these patients. All Leader’s Summit in Capetown, South are free and easily accessible online. Africa. The Declaration sets forth 9 targets that support one overarching goal: “There Two Bloom readers share their personal will be major reductions in premature stories about starting families after breast deaths from cancer, and improvements in cancer treatment. Mrs. Daren Gowen of quality of life and cancer survival rates.” Capetown, was a young, unmarried teacher when she learned she The International Pyscho-Oncology had breast cancer and would have to Society turns 30 this year and undergo chemotherapy. She worried that Professor Jeff Dunn, Chair of Reach she would never marry and that, in light to Recovery International’s Board of [email protected] of her cancer history, she could not – or Management, reflects on the progress Cathy Hirsch even should not – have children. Years the IPOS has made in integrating later, Mrs. Gowen reflects on her journey quality psycho-social care into routine and reveals a “happily ever after” ending. clinical oncology practice. Professor annual celebration in Portugal. Each Dunn further maps out challenges and year on Portugal’s national day of breast Similarly, Xiuman Wu of Taiwan was opportunities for the way forward. cancer prevention, thousands of pink only 27 when she was diagnosed with balloons – each representing a new stage III breast cancer. Only a year We receive a preview of the 16th World case of breast cancer expected to be after her chemotherapy ended, Xiuman Congress of Psycho-Oncology and diagnosed that year – are released and her husband were surprised by an Psychosocial Academy from the Chair into the air over five cities. The event unplanned pregnancy. The couple’s of the Congress, Luzia Travado. The is called “Um Balao, Uma Vide,” or “A concerns for both Xiuman’s health and Congress will be held in Lisbon, Portugal Balloon, A Life.” This past October 30th, the health of the unborn child proved this year from October 22nd to October 5,000 pink balloons were released. unfounded: nine months later a thriving 24th. The main theme will be “Integrating baby girl was born, and three more Psycho-Oncology into mainstream From our Global Kitchen, Mary Hemrajani children eventually followed. Xiuman cancer care: from research to action.” of the Hong Kong Breast Cancer considers the children to be four of Foundation shares a delicious and healthy many blessings she has received. Siglinde Kallnbach and Marianne recipe for Turkey Bites, which can be Koch of Cologne, Germany report that served as an appetizer or main course. Luba Osinceva shares another Kallnbach’s participatory performance perspective: that of a parent whose art creation, “a performancelife e.V.,” We anticipate making an announcement strength to battle breast cancer was was presented earlier this month at the soon on the 18th Reach to Recovery fueled by her desire to see her daughter carnival/parade in Cologne-Ehrenfeld. International Breast Cancer Support into adulthood. Luba was diagnosed with The evolving performance is designed Conference. We look forward to stage IV breast cancer when her daughter to show empathy for and solidarity sharing the location and dates of the was only 6 years old. That was 15 years with those who are fighting cancer. conference with you on the Reach ago and, today, Luba is still going strong! to Recovery International website. Sofia Abreu, the National Coordinator In other matters, our parent organization, of Movimento Vencer e Viver, fills us the Union for International Cancer Control in on an event that has become an Join Now!

Become part of the Reach to Recovery International Network

The Reach to Recovery International (RRI) Network seeks to improve Attention existing RRI member the quality of life for women with breast cancer and their families by organisations - please submit nurturing volunteer peer support and promoting other services to meet the new application form to their needs, such as advocacy and consumer involvement in research. keep your membership active!! Please visit www.reachtorecoveryinternational.org for more information and to download the membership application. 03 Jan Steyn Remembrance

It is with deep sadness that to accompany him. During the visit, an appointed Jan to chair an independent Bloom reports the passing of the inmate reported to the judges that the trust to assist in the political transition. Honorable Jan Hendrik Steyn, prison commander tolerated regular Jan continued to steer the trust for the husband of our beloved immediate assaults upon the prisoners by guards. next six years, guiding it through the past president, Ann Steyn. The commander attempted to silence ultimate abolishment of . Once the inmate by threatening him, but the job was completed, Jan was able to the judges insisted that the inmate be return to the bench. He was appointed allowed to continue. Subsequently, the to the Courts of Appeal of judges wrote a report that resulted in and Swaziland. He also served on the the commander’s removal from his post. Court of Appeal for 18 years, Years later, the incident was appreciatively the last 11 as President of that Court. recalled by the inmate in question – – in his autobiography These career highlights touch on only Long Walk to Freedom. The bond a fraction of the public services Jan that Jan and “Madiba” formed as a performed. While a judge, he chaired result of that meeting remained strong several commissions of inquiry. For seven between them for the rest of their lives. years, he headed up the Independent Commission for the Remuneration of Underpinning all of Jan’s work was his Public Office Bearers, and for 10 years commitment to moving South Africa he was a chancellor of the Medical Nelson Mandela, Jan Steyn, Ann Steyn toward a free society, founded on the rule University of South Africa (Medunsa). of law and the protection of fundamental Jan held honorary doctorate degrees rights. He envisioned for his country a from both Medunsa and the University Like his wife, Jan Steyn dedicated a great modern economy and urban upliftment. of , Stellenbosch. Upon his deal of his time to helping others. He With the uprising in 1976, Jan retirement from the Lesotho Court of studied law at was pulled to lead in another direction. Appeal, he was knighted by King Letsie III. and, upon his graduation in 1950, He had immediately recognized the became a member of the Cape bar. At need for a coordinated response to Despite health problems, Jan continued age 36, he was appointed to the Cape the uprising and had helped organize a to write articles for the media about bench, becoming one of the youngest summit of industrialists and black urban social issues of importance to him and judge’s in South Africa’s history. leaders. The summit led to the formation many others. He took great pleasure in of the Urban Foundation, a nonprofit his many friends and family members, Jan believed strongly that any society’s organization funded by businesses, including the seven children, 15 great- degree of civilization is measured by the with international support, to facilitate children, and a great grandchild he way that society treats its prisoners. He access to housing, education, and shared with Ann. Ann’s long and opposed corporal punishment, believed business opportunities in South Africa’s successful tenure as President of that an accused’s financial situation urban black communities. In 1977, Jan Reach to Recovery International was should be kept in mind when setting bail, was granted special leave from the a particular source of pride for him. and promoted non-custodial sentences bench in order to run the foundation. Reach to Recovery International extends whenever possible, especially for first- heartfelt condolences to the Steyn time offenders. Jan made frequent visits In 1990, when the ban on the African family on the loss of this outstanding to prisons to assess conditions first- National Congress was lifted and Nelson man. He created a lasting legacy, hand. On one particular trip to Robben Mandela was released from prison, South and he will be missed by many. Island, he invited two of his fellow judges Africa’s then-President F. W. De Klerk

Alternative Family Building Options for Cancer Survivors by Gwendolyn P. Quinn, Ph.D., of fertility, but recent evidence shows in having a family, you have options. Moffitt Cancer Center, USA that is not a reliable measure. It is not It is important to identify your ultimate unusual for some female survivors to goal. Is it to experience a pregnancy? Many women diagnosed with cancer retain their fertility but to experience To have a child who shares your or may not be aware of the potential risk premature ovarian insufficiency your partner’s DNA? To contribute to of infertility, feel too overwhelmed (also known as ovarian failure or the support and care of an infant or with treatment planning to think premature menopause) about 5 teen? Some of these family building about it, or may not have time to years post-treatment. A reproductive options may seem incredible and pursue any options. An equal number endocrinologist can provide an others not suited to your own morals of survivors may be uncertain about assessment of fertility status. and values. One of these options is to their current fertility status. In the receive donor eggs (oocyte donation). past, the presence or absence of If you are experiencing fertility issues due menses was considered an indicator to cancer treatment but are interested continued on p. 5 04 Alternative Family Building Options for Cancer Survivors continued from p. 4

If your body is no longer producing eggs, term for women who are unable to Still other women find that a child- you can select eggs from a donation sustain a pregnancy. It may be the free life suits their career goals. It is bank and even select physical or racial/ biological embryo of the couple, important to know the alternative family ethnic traits that match your own. The or an adopted embryo or even a building options that exist as well as donated eggs can be fertilized with combination of donor egg or sperm. to examine your goals and wishes. partner or donor sperm and the embryo implanted into your uterus or that of a Traditional adoption of an infant or surrogate. Another option is to select child is also an option, but in some Resources: a donor embryo. Similar to an egg states and countries it can be difficult banks, these are banks of embryos for a cancer survivor to adopt due to Egg donation created from other couples (usually their medical history. However, many as part of an IVF process) who have survivors have built their families through Perspectives on completed their families and allowed private or international adoptions. adoption after cancer There are several forms of adoption: the embryos to be adopted by other Financial Assistance families. One way to think of this is that agency, independent, open vs closed. it is like selecting a child for adoption. Cancer Friendly Some women decide to be connected Adoption Agencies Surrogacy can take many forms. to the lives of children through step- A surrogate or gestational carrier parenting or through involvement with can be used to carry an embryo to nieces and nephews or god-children.

Blind Faith – The Story of My Two Beautiful Daughters by Mrs. Daran Gowen, Learning my future with. But when faced with a Support Teacher, Somerset West, life-threatening cancer, I made the tough Capetown, South Africa choice to undergo chemotherapy that would possibly render me sterile for I was diagnosed with breast cancer the rest of my life. My diagnosis was so at the tender age of 32. My mother serious that I wasn’t even advised to had been diagnosed with bilateral think about alternative means to maintain breast cancer in her 40’s, and my my fertility. My oncologist wanted to maternal grandmother had died of start my treatment as soon as possible. ovarian cancer at 51, so I always However, by some miracle, my cycle knew that I might be a carrier of was never affected by my CMF-chemo. the breast cancer gene. However, That was a huge relief and confidence nothing can ever prepare you for builder for me - at least something in the devastating news that you have my body was still relatively normal! cancer. I was young, relatively healthy, had the best job I had Through my cancer treatment, I parked ever had and my future career any ideas or aspirations for my future. my feet. Our wonderful church pastor and life doing something I loved I think many cancer patients share a helped me renew my confidence as a was spreading out before me, similar experience. During treatment, you young single person and face my fears like a glorious golden path. That are too overwhelmed, tired, fragile and of getting involved in a relationship all came to a crashing halt with scared to think ahead or do anything again. With time, my ex-boyfriend and my biopsy results, confirming a much but survive the treatment. But I got back together, became engaged, highly aggressive, triple-negative when it was over, I had many serious and got married a year later. malignant breast tumour. issues to face. I worried about the For me, getting pregnant was a very Nearly a year later, after surgery for a effect my cancer would have on my self-image and esteem. Would any man complex issue. I was told my fertility lumpectomy, extensive radiation, and would be affected, and the effect of nasty chemotherapy, I returned to work ever want to get involved with me again, and how would I discuss my scars? chemotherapy on the fetus was unknown. and started to put the pieces of my More importantly, I knew getting pregnant life back together and think about my However, I experienced so many would have an impact on me and was future. I always knew that I wanted to wonderful gifts during this time. I had risky. I wondered was it even irresponsible have children, and had come close to an amazingly supportive family, friends finding a wonderful partner to share continued on p. 6 and church to help me get back on

05 Blind Faith – The Story of My Two Beautiful Daughters continued from p. 5 for me to bring children into the world, never thought could happen. I had a support, we survived my recurrence as with the risk of them also carrying completely normal pregnancy and gave a family. It does cause me anxiety that the breast and ovarian cancer gene. I birth to my daughter in 1998. Five years they will have to face the possibility of suppose it helped that I was positive, later, a second pregnancy resulted in having breast cancer, but I am optimistic strong-willed and determined to not let another beautiful, healthy baby girl. We that improved detection techniques cancer take over my life. I also had a very named both girls after types of flowers and treatment options will mean that, in good relationship with my oncologist, as they are the blossoms of my life. the future, even if a particular patient’s and I shared my aspirations to be a I have had 16 wonderful years of fun breast cancer cannot be cured it will mother. He encouraged me to try and and adventures with them, and being a be treated as a chronic condition and have a ‘normal’ life, and recommended mother has been my greatest joy in life. not a life-ending disease. Perhaps my I wait a year after my scans were approach has been risky, but my life clear before trying to conceive. I was free of cancer for over 16 years, has been so much richer as a result of until 2012, when I found another having children after breast cancer. Of I came home from work one Friday small breast lump which turned out course, it wouldn’t have been possible night, feeling unusually tired and queasy. to be malignant, and I opted for a full without an understanding and supportive It was then I realized I was pregnant! mastectomy. Having to go through partner, who has been through a lot! I was so gloriously happy! It was a breast cancer with any age children But that is a story for another time. dream come true, and something I is very traumatic, but with help and

Fertility Preservation: Finding Hope for Building a Family by Emma Marquez, LBSW There is hope for a family after treatment post cancer treatment. LIVESTRONG and Anne Marie Norman, – reproductive technology allows for Fertility provides discounted rates for LIVESTRONG Foundation the preservation of gametes (sperm, preservation and free fertility medications eggs or embryos) before undergoing for women. Other organizations offer Survivors who reach out to the treatment. Then, after treatment, family building grants that cover Foundation regarding LIVESTRONG assistive reproductive technology (ART) expenses such as in-vitro fertilization, Fertility run the gamut: young can be used to achieve a pregnancy. adoption, surrogacy, and more. men and women still in school; Other options, such as donor sperm Similarly, many individual fertility centers childless married couples; single or eggs, surrogacy, and adoption make efforts to discount and finance professionals; small families are also available for exploration. procedures for cancer survivors. with the potential to grow. None of these survivors anticipated Fertility concerns are on the radar, but The hidden costs of fertility preservation a series of strategic phone many cancer survivors are suffering and family building are a significant conversations and appointments extreme disbelief as they research challenge. But, resources exist to with sperm banks or fertility options for fertility preservation and empower every cancer survivor, centers when they envisioned post-treatment family building. A regardless of diagnosis, to hope for his bringing children into the world. young couple interested in preserving or her ideal family after cancer treatment. embryos in anticipation of the female Resources like LIVESTRONG Fertility’s An increasing number of oncologists are partner’s cancer treatment could incur Emotional Support Navigators provide including fertility on checklists addressing a cost of approximately US$12,400 survivors and their loved ones a way to concerns of newly diagnosed cancer per cycle. The couple may also pay move forward, informed and empowered. survivors. The concern is real; cancer nearly US$400 per year for long treatments can affect post-treatment term storage of the frozen tissues. For more information on fertility and family building in many LIVESTRONG Fertility, visit: ways. An individual cancer survivor’s The price tag of fertility preservation is www.LIVESTRONG.org/Fertility. infertility risk is unique and dependent a barrier for many survivors who hope on factors that include treatment type, for a family. In response to this need, age, and cancer diagnosis. Each the LIVESTRONG Foundation and survivor should ask their oncologist other leaders in the field of fertility have or a reproductive endocrinologist created financial assistance programs to about his or her individualized risk. support those who want to bear children

06 Personal story: Luba Osinceva

Hello, After the surgery I had an accurate Many people saw my struggle My name is Luba Osinceva and I am 61 diagnosis – stage IV breast during my illness and, after I had years old. I am a director of the Post- cancer. I underwent a standard conquered it, many of them started Mastectomy Rehabilitation School, a treatment: radiation therapy, asking me for an advice. I was very public foundation. I am also a nurse, surgery and chemotherapy. In happy to help them with all possible masseur, cosmetologist, instructor in addition, I used complementary suggestions that I could give. exercise therapy and physiotherapist. treatments: herbal medicine, dietary supplements and exercises. In 2010, several other survivors In 1999, I was diagnosed with breast and I organized the Post- cancer. At the time I felt physically My husband and friends helped me Mastectomy Rehabilitation School, healthy, but suddenly the word “cancer” to restore my health after treatment. the purpose of which is to: was very frightening to me. I was I really needed that help, especially • help women who are healthy shocked and scared. Luckily, I had the moral support, because my health prevent advanced illness by my husband, my daughter, my sister was seriously compromised and I was undergoing medical examinations and numerous friends to awake my about to give up. They did not let me. on a regular basis, desire and willingness to fight for life. They helped me to survive. In addition, my faith in God supported me and • help women who are ill keep even strengthened during my illness. a positive attitude and believe Having survived cancer helped me to that cancer is curable, and understand that there is nothing more • help those who have already precious than life, and there cannot be undergone treatment to rehabilitate anything more precious than this gift and lead a healthy lifestyle. of God that we get only once. But the main reason why I could not give up to Unfortunately, many people leaving the illness was my little daughter who, hospitals after treatment are not at the time, was only 6 years old. provided with any kind of rehabilitation plan, which makes it very hard for Unfortunately, cancer is very common them to adapt and live after surgeries nowadays. But I concluded for and treatments. The Post-Mastectomy myself that there are no incurable Rehabilitation School provides hope diseases and that if one can fight to many women by welcoming them he or she must fight for life. and providing the help they need.

Breast cancer information and support – pregnancy, fertility, young women and more

Breast Cancer Care UK so not all of it is relevant worldwide. Breast Cancer Care is the only UK-wide However, they contain plenty of useful charity providing specialist support and Breast cancer during pregnancy is and important information. And it tailored information for anyone affected rare and women who are diagnosed is reviewed regularly by healthcare by breast cancer. Our clinical expertise with it at this time often feel very professionals and people with relevant and emotional support network help isolated. That’s why UK breast experience related to breast cancer to thousands of people find a way to live cancer support charity Breast Cancer ensure it is accurate and user-friendly. with, through and beyond breast cancer. Care has tailored information freely available for women in this situation. Nine languages As well as web-based text, anyone There is also more general information can download free factsheets from on Diagnosing and treating breast the website. These include the titles: cancer available free in nine languages, • Breast cancer during pregnancy both as text and audio files. People can either access files online or download • Treating breast cancer them in the following languages: • Fertility issues and breast • Arabic • Hindi cancer treatment • Bengali • Polish • Younger women with breast cancer. • Cantonese • Punjabi As with all Breast Cancer Care’s patient information, the treatments and care • French • Urdu. pathways discussed refer to UK guidelines, • Gujarati 07 Making fertility decisions after breast cancer

Breast Cancer Network Australia (BCNA) It may be helpful to young women who: Fertility is a priority for many • have recently been diagnosed young women with breast with early breast cancer cancer, but too often they receive • are still of reproductive age varying guidance about how (having regular periods and no to make important decisions menopausal symptoms) about future family planning. • are thinking of starting a family or having more children in the future. In Australia, approximately 3-7% of women with early-stage breast cancer The booklet is a unique collaboration are under 40 years of age at diagnosis. between University of New South Wales Most young women diagnosed with resource helps professionals to broach and BCNA. Health care professionals are this issue with their patients and help breast cancer undergo chemotherapy, encouraged to seek out the free resource which often leads to reduced fertility. ensure younger women are provided and use it to help start a discussion clear and current information about their about fertility with their patients. After being diagnosed with early fertility choices soon after diagnosis.” breast cancer, many young women Maxine Morand, BCNA CEO, reports will need to make quick decisions as The booklet is available online at that fertility concerns are sometimes www.bcna.org.au/store/products/ to whether to preserve fertility before overlooked by health professionals they start chemotherapy. It is crucial fertility-related-choices-decision-aid. when younger women are diagnosed For Australian residents, a hard copy these women are given clear and with breast cancer or undergoing current information about their fertility can also be ordered by calling BCNA treatment, despite this being an issue of on freecall 1800 500 258. Please choices soon after diagnosis. Breast huge importance to individual women. note: Due to limited supply there is a Cancer Network Australia’s (BCNA) According to Maxine, “Younger women maximum of 3 booklets per order. Fertility-related Choices: A Decision diagnosed with early breast cancer need Aid for Younger Women with Early to make decisions quickly about their About Breast Cancer Network Breast Cancer is a free booklet for fertility, and whether they would like to Australia (BCNA) young women who have recently been pursue fertility preservation measures. diagnosed with early breast cancer. This decision needs to be made before Breast Cancer Network Australia beginning chemotherapy.” She adds (BCNA) is the peak national organisation There are a number of methods that young women need to be better for Australians personally affected by for preserving fertility. Younger supported and informed when reaching breast cancer. BCNA works to ensure women who are planning to become decisions about fertility: “We know that that Australians affected by breast pregnant in the future, or even those fertility is an extremely important issue for cancer receive the very best support, who haven’t given children much younger women newly diagnosed with information, treatment and care thought, should be encouraged breast cancer but in the past information appropriate to their individual needs. to consider some of these options available was often inadequate.” before they start cancer treatment. Visit us at www.bcna.org.au to Maxine says BCNA’s booklet helps health find out more about our programs The booklet contains information about professionals better navigate this often and services, including the free My cancer treatment, how it can affect complicated issue with their younger Journey Kit for Australian women fertility, and fertility options to consider. breast cancer patients: “This fantastic newly diagnosed with breast cancer.

“Um Balão, Uma Vida” (A Balloon, a Life) by Sofia Abreu, National Coordinator On this day, joined by a common purpose, of Movimento Vencer e Viver the volunteers of Movimento Vencer e Viver wished to alert Portuguese women Within the context of the national to the importance of screening and early day of breast cancer prevention, on detection in fighting breast cancer. October 30th 2013, the Portuguese League Against Cancer’s Reach Each of these balloons corresponded to Recovery peer support group, to a new case of breast cancer that Movimento Vencer e Viver, promoted arises every year in Portugal. a national action called “Um Balão, Uma Vida” (A Balloon, a Life) The 5,000 balloons soared into the sky, by releasing, at the same time, simultaneously in 5 cities, and raised 5,000 pink balloons, distributed awareness of the importance of screening in five cities around the country: and early detection of breast cancer. Lisbon, Oporto, Coimbra, Funchal and Angra do Heroísmo. http://www.ligacontracancro.pt 08 2014: Galvanising efforts to achieve the World Cancer Declaration Targets

Union for International cancer community to reach out to non- To continue pressing for cancer and Cancer Control (UICC) traditional partners in the development, other NCDs to be embedded within disability, education, employment and many the next generation of internationally In 2014, the Union for International other sectors for innovative partnership. agreed development goals. Cancer Control (UICC) will be working with its 800+ members The Declaration targets span the entire This year old World Cancer Day (4 in 155 countries to help translate continuum of care for cancer, and have February) a 2nd edition of the UICC’s global commitments to non- been enhanced to acknowledge the Advocacy toolkit was launched, including communicable disease (NCD) importance of quality cancer care, and a series of evidence sheets that support prevention and control into concrete equitable access to effective, safe patient- each of the World Cancer Declaration actions to reduce the cancer centered services that are critical to the targets, practical advocacy tools, burden, based on comprehensive management of breast cancer. Declaration and a guide to mainstreaming cancer national cancer control plans. targets 6 and 7 refer specifically to the need in the post-2014 agenda. For more for affordable early detection programmes information on the 2014 World Cancer To support these efforts, in November including breast cancer screening, as well Day campaign, “Debunk the myths” 2013, at the World Cancer Leaders’ as accurate diagnosis and referral, and please visit: www.worldcancerday.org Summit in Cape Town, South Africa, UICC access to multimodal treatment including launched a refreshed World Cancer surgery, systemic therapy and radiotherapy. Declaration including 9 targets and one overarching goal: There will be major UICC encourages breast cancer reductions in premature deaths advocates to use the Declaration: from cancer, and improvements in To urge governments to implement quality of life and cancer survival policies and programmes that the cancer rates. By more closely aligning the community knows will be successful if they Declaration with the emerging global are adequately resourced and embedded NCD framework (including the Global within national cancer and NCD plans. Monitoring Framework for NCDs, Global NCD Action Plan 2013-2020 and Global To reach out beyond health ministries Coordinating Mechanism for NCDs) and to gain the political backing of all the post-2015 development discourse, sectors of government for a health UICC believes that the Declaration targets systems approach to breast cancer will resonate more widely, allowing the control www.portal.bhgi.org

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130821_WCC2014_Advert_Bloom_A5.indd 1 8/21/13 5:3509 PM Scars with Blessings – Extending My Dreams with Powerful Love

Xiuman Wu, Taiwan Breast Cancer Alliance (TBCA)

In 1997, at the age of 27, Xiuman Wu was diagnosed with stage III breast cancer. Now, 17 years later, she has four children. During recent years she has fulfilled dreams with her peer support group, including taking family wedding pictures and climbing the highest mountain in Taiwan - Jade Mountain (3,952meters). Even though she faced challenges in the training process, she conquered the mountain and created a wonderful memory. Through her story, she encourages people affected by cancer and brings hope to young survivors. Xiuman Wu’s Personal Story Close your eyes. Imagine a doctor informing you: “You have cancer.” What thoughts go through your head? It was April of 1997, during the spring of my life, when I learned that I had breast cancer and it had already spread to 15 lymph nodes. This unexpected turn in life resulted in many “impossible” things coming true. Reflecting back, breast cancer was actually God’s blessing in disguise - a blessing that has grown over the years. The first blessing came in October of the same year when I married my Canadian boyfriend of six years. During this most difficult time he continued to love me, just as Jesus’s love encouraged me to push forward. A year after chemotherapy, while still using Tamoxifen and despite taking precautions, I found myself pregnant, and in May of 1999, God gave us a second blessing – a beautiful baby girl. Forgetting my health issues, I was determined to have another baby. with Taiwan Breast Cancer Alliance and contents of my songs deepened. Three miscarriages and three years (TBCA). Because of TBCA, I started Only after descending Mt. Jade, did I tell later, a 0.6cm object was discovered to courageously dream. In 2013, I others and then underwent surgery. The in my lung. After an unsuccessful participated in mountain climbing biopsies showed the lumps were benign. operation, the lump was monitored for activities and concurrently started to The scars left by the knife are to me a over a year until I became pregnant write poetry and songs, dreaming of reminder of God’s mercy and grace. again. Blessings three and four came praising God with one of my songs at 9 months later: a baby boy and the the peak of Mt. Jade. Three days before In retrospect, as a mother of four lump disappearing. God’s grace did the climb, a routine check-up revealed children, the past 17 years have been not stop - two more children followed. 2 lumps where my right breast had occupied with raising children. To others It was as if God had replaced the three been. I dared not tell others for fear my this may seem not to be any significant miscarriages with three healthy children dream would die. As the remembrance contribution, but I believe that my life of the pain of chemotherapy flooded has been filled with grace and mercy In 2012, a cook book for cancer over my mind, and the realisation of the and that I will increasingly experience patients resulted in my connecting potential need to start it again, the tone God’s grace and mercy as I grow old. 10 Emerging international directions in psycho-oncological care Supporting women affected by breast cancer with pregnancy and fertility issues

of life, underpinning the advancement universal access to supportive care. And of psycho-oncology research and they have persisted in their striving to practice. In many jurisdictions, including overcome a complex challenge. That is, the United States of America (USA), how to enable the integration of best- Canada, the United Kingdom, and practice psycho-social care into routine Australia, this advancement has been cancer clinical practice, on a global scale. guided by patients themselves, who have demanded a more holistic quality of care While the dimensions of the challenge pivoting on patient-centred service. are considerable, the opportunities for addressing it are multiplying, through Outcomes include action by the USA’s the concerted efforts of cancer control Institute of Medicine (IOM) in 2008 stakeholders to work in collaboration to integrate psycho-social care into and partnership. Recent progress routine clinical practice, establishment suggests that the international influence of the IPOS International Standard of psycho-oncology will continue to of Quality Cancer Care in 2010, and be defined by collaborative efforts to refresh of the Union for International enable the translation of research into Cancer Control’s (UICC’s) World Cancer practice. The development of cost- Declaration in 2013 to call on all nations effective and culturally appropriate to provide cancer patients with universal strategies to underpin psycho-oncological Prof Jeff Dunn access to distress management. care will be particularly important in driving a global agenda for change. Chair, RRI Board of Management Today, much work remains to integrate Secretary, International As will global demand from patients best-practice psycho-social care into for comprehensive cancer care. Psycho-Oncology Society routine clinical oncology practice on CEO, Cancer Council Queensland a worldwide scale, leveraging from There can be no doubt that psycho- partnerships and collaborations oncological care has a pivotal role to play 2014 marks 30 years since the between groups such as IPOS and in informing peer support and outreach founding of the International Psycho- RRI. Closer cooperation between non- for women affected by breast cancer, Oncology Society, an affiliate of government organisations, international helping to improve coping and adjustment RRI. The organisation was formed in associations, health policy makers, in relation to issues such as pregnancy response to the need for international medical professionals, government and fertility, along with all aspects of cooperation across medical and bodies and civil society is key to future each woman’s cancer experience. scientific disciplines to investigate progress. Emphasis must be placed and improve psychosocial care and on communication and collaboration, quality of life for cancer patients. The across disciplines and sectors, in order International Psycho-Oncology Society website, founding members of IPOS identified to achieve collective aspirations for higher 2014. IPOS History, Vision and Mission. Retrieved a gap in clinical understanding of the standards of quality cancer care. January 2, 2014, from http://www.ipos-society. psychological, social, and behavioural org/about/history_vision_mission.aspx. issues in cancer care, and set about Future challenges and opportunities addressing these through research, Watson, M, Dunn, J, Holland, JC: Review advocacy, and education related to Over the course of 30 years the pioneers of the history and development in the field of the subspecialty of psycho-oncology. of psycho-oncological care have forged psychosocial oncology. International Review significant progress. They have informed of Psychiatry, Early Online: 1–8, 2013. The formation of IPOS was one of the our medical and scientific understanding early significant steps towards universal of mental health as it relates to quality of Bultz, BD, Holland, JC: Emotional distress acknowledgement of the importance life, disease progression, and survival. in patients with cancer: the sixth vital sign. of psycho-social care in cancer control, They have helped to investigate and Community Oncology 3:311-314, 2006. signposting the establishment of psycho- explain the psychological, behavioural, and oncology as a specialist discipline. Since social factors that influence cancer control, Watson, M, Dunn, J, Holland, JC, op. cit. then, an abundance of emerging evidence enhancing efforts to improve public health has demonstrated a relationship between through scientific discipline. They have psycho-social care and patient quality advocated for patient quality of life and

11 LIVESTRONG Fertility Program by Ashley Koenings and Jamie Hill Austin, Texas. She was two months for the opportunity to have children shy of finishing a five-year course of in the future. That’s when she was Sarah Lisle was 25-years old when tamoxifen, a drug used to combat connected to the LIVESTRONG she was diagnosed with breast estrogen-driven breast cancer. She Foundation and the LIVESTRONG cancer. At the time of her diagnosis, and her husband were getting excited Fertility program (formerly Fertile Hope). no one discussed how treatment at the prospect of finally starting a might affect her fertility or presented family of their own. Then Sarah found One of the goals of LIVESTRONG her with options for fertility a new lump. It was cancerous and Fertility is to increase access to fertility preservation. Sarah was unmarried, estrogen-driven, which meant her preservation services and treatments for and the thought of having children oncologist would likely recommend men and women diagnosed with cancer. was far from her mind. She just the removal of her ovaries. The hope This is primarily accomplished through wanted to get past treatment and of having children suddenly started to a collaborative program that works to move on with her life, which she did. diminish for Sarah and her husband. reduce the financial barriers for fertility preservation. LIVESTRONG works with Five years later, Sarah was married Sarah’s oncologist sprang into action and had a newly purchased home in and advised her to freeze embryos continued on p. 12 12 LIVESTRONG Fertility Program continued from p. 11 nearly 400 fertility centers across the to preserve her embryos prior to options and get educated through U.S. that have agreed to discount their treatment could be looking at a price online tools like the Fertility Risk Tool fertility preservation services at least 25 tag of $12,400. Typically none of these and the Family Building Options Tool. percent to men and women diagnosed expenses are covered by insurance with cancer. In addition, women receive plans. Since 2004, cancer survivors In April 2011, Sarah and her husband a free round of pre-cycle hormone have saved nearly $13 million in fertility were able to welcome a baby girl, medications, which amounts to more center discounts and medication costs Lillian DeAnne, into the world. Through than $4,000 in savings per woman. through LIVESTRONG Fertility. increased awareness and reduced financial barriers, LIVESTRONG tries to For men and women diagnosed with LIVESTRONG aims to increase increase hope among cancer survivors cancer, this financial assistance can be awareness about fertility and cancer to build families of their own in the future. the difference between being able to among healthcare professionals through preserve fertility and being unable to professional education slides that See more of Sarah’s story at: do so. These individuals face mounting answer a lot of important questions www.LIVESTRONG.org/Sarah and medical bills and, unfortunately, the about fertility preservation for oncology learn more about LIVESTRONG Fertility cost of fertility preservation is not patients. The foundation also aims to at www.LIVESTRONG.org/Fertility cheap. For example, a woman hoping empower cancer survivors to explore

A performancelife e.V. – empathy for and solidarity with people suffering from cancer by Siglinde Kallnbach and Marianne Koch, Cologne, Germany On March 4th, 2014, they marched for the 4th consecutive year: a performance life e.V. once again particiapted in the annual carnival- parade in Cologne-Ehrenfeld. A performancelife e.V is the creation of the performance artist Siglinde Kallnbach and is meant to convey empathy for and solidarity with all people suffering from cancer. Kallnbach developed the evolving, participatory performance in 2001, after her own cancer diagnosis in 2000. She also organizes exhibitions and other types of performances by recruiting other participants and serving as conductor. In Kallnbach’s words, “Colourfulness and happiness of Carnival are good medicine for cancer patients.” “We always have a lot of fun,” adds Jürgen Raap, the artist who paints the beautiful canvases that are carried during each of the carnival-performances. You can view previous performances by visiting http://www.verein-a. performancelife.com and clicking on “video.”

Top: Siglinde Kallnbach (orange hair and skirt) and Jurgen Raap, just behind her (red hair). Bottom: Participants in the 2013 performance of a performancelife e.V at the carnival-parade in Cologne-Ehrenfeld. 13 Global Kitchen

This delicious recipe is brought to you from Hong Kong!

Welcome to Global Kitchen, where we feature exotic recipes and home cooking from cultures around the world. If you have a recipe to share, please email [email protected] Turkey Bites

Submitted by Mrs Mary Hemrajani, Vice Chairman, Hong Kong Breast Cancer Foundation Preparation time: 10-15 minutes Cooking time: 20 minutes Serve 4-5 persons Ingredients • Minced turkey 450g or 1lb (approximately) • Mix well with your hand, the • ½ Onion (finely chopped) mixture should stick together, if • 2-3 gloves garlic and small the mixture is too wet, add more Healthy tips piece of ginger (finely chopped) oats to absorb the moisture. • Turkey meat is low fat, low • Green parsley (finely chopped) • Shape the mixture into small patties. calorie and low in cholesterol, • 85 g porridge oats (approximately) • Heat up a non-stick frying pan and at the same time it is rich • 1 egg white, beaten sear the turkey patties on each side in vitamins and protein. It is known to be one of the • Lettuce piece for serving until well coloured (3-4 minutes). Shallow fry till fully cooked. healthiest white meat. • 2 tsp virgin olive oil • Oat is high in dietary fibre, • Salt and pepper to taste • Serve in lettuce leaves as it is or with tangy tomato mint salsa. vitamin A, vitamin B complex, magnesium etc…It also helps Method to lower our cholesterol. Cooking tips • Mix all dry ingredients: • Virgin olive oil is minced turkey, chopped • Make smaller size patties to avoid monounsaturated fat, it is onion, ginger, garlic, parsley, overcooking the turkey patties. known to be good for health. oats in a bowl. Add salt and • Best serve with Tomato Mint Salsa : pepper and season to taste. • Mix tomato, mint leaves, lime juice, • Add 2 teaspoons of olive oil ginger, chili (optional) and olive oil and beaten egg white. in a mixer. Season to taste.

14 Reach to Recovery International Governance Structure Board of Management International Advisory

Chair: Jeff Dunn, Cancer Council Queensland Committee Elizabeth Brien, Reach to Recovery International Chair: Cathy Hirsch Reach to Recovery International / Meredith Campbell, CauseForce, Amazon Heart American Cancer Society Suzanne Chambers, Griffith University Edith Cooper, CCQ Breast Cancer Support Service Cathy Hirsch Reach to Recovery International Megan Dwyer, Cancer Council Queensland Ranjit Kaur, Reach to Recovery International Ranjit Kaur, Reach to Recovery International Ann Steyn, Reach to Recovery International Stella Kyrikides, Europa Donna Cyprus Jane Turner, University of Queensland Gloria Lin, Taiwan Breast Cancer Alliance Ex officio: Mary Gospodarowicz, UICC Ex Officio: Jeff Dunn, Cancer Council Queensland

Bloom Cathy Hirsch Maggie Watson President Board, Editorial Reach to Recovery International International Psycho-Oncology Society (IPOS)

Board Paul B. Jacobsen PhD Joanne S. Buzaglo PhD Board Vice President, Research & Training International Psyco-Oncology Society (IPOS) Cancer Support Community

Anne Savage Jane Salisbury Head of Advocacy Corporate Communications Manager Cancer Council Queensland Cancer Australia

Rebekkah Schear Stephanie Newell Programs Manager Advocate, Breast Cancer Network Australia LIVESTRONG

Events

Glasgow, Scotland Melbourne, Australia 9th European Breast Cancer Conference (EBCC 9) 2014 World Cancer Congress 19 –21 March 2014 3 – 6 December 2014 www.ecco-org.eu www.worldcancercongress.org

Lisbon, Portugal 16th World Congress of Psycho Oncology 20 – 24 October 2014 www.ipos-society.org/ipos2014

Our mission Reach to Recovery International is built on a Reach to Recovery International simple yet universal principle: a woman who is a program of the Union for has lived through breast cancer and gives International Cancer Control and is administered by Cancer of her time and experience to help another Council Queensland. woman confronting the same experience To contact RRI please email is a valuable source of support. Reach to [email protected] Recovery International is committed to working or visit the website. The material to improve the quality of life for women with published in Bloom does not necessarily express the views breast cancer and their families through a of RRI but is provided for the wide range of services offered worldwide. information of readers.