The News Board
Featuring news snippets from BCS and around the world ....
Social support can ease physical symptoms of breast cancer May 2013
The older breast cancer survivor - what does she need? May 2013
Having end of life conversations... April 2013
Instructions for performing a self breast exam April 2013
Surviving is traumatic too - doctors are just beginning to understand PTSD April 2013
Study finds genetic link to lymphoedema April 2013
Measuring the risk of heart damage during radiation therapy April 2013
A Lymphoedema 'app'for Smartphones April 2013
The doctor/patient relationship in Stage 4 breast cancer April 2013
Study sees more breast cancer at early age March 2013
NZ women trial new targeted radiation therapy November 2012
Dr Susan Love's Army of Women HOW study October 2012
What does it mean to live with a diagnosis of secondary breast cancer? October 2012
How breast cancer made me a Yogini September 2012
An offbeat way to fight cancer: with photos and a tutu August 2012
Do support groups work for men whose partners are diagnosed with breast cancer? August 2012
Pirates of the Chemotherapy - new American play June 2012
What are the Stage 4 Travelling Pants? They're coming to NZ June 2012
Recent US poll findings prove value of talking to other survivors May 2012
Introducing three new Breast Friends Coordinators May 2012
Support for young women ... April 2012
We farewell BCS Chair Deirdre Parr April 2012
Members enjoy some March Mad Hatter Madness March 2012
Social support can help ease physical symptoms of breast cancer and improve outcomes
(Posted May 2013)
Breast cancer patients who say they have people with whom they have a good time, or have "positive social interactions" with, are better able to deal with pain and other physical symptoms, according to a new Kaiser Permanente study published today in Breast Cancer Research and Treatment. Read more here on the Science Daily site ...
Eur J Oncol Nurs. 2013; 17(3):311-6 (ISSN: 1532-2122)
PURPOSE OF THE RESEARCH: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences.
METHODS AND SAMPLE: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70-90, and were analysed using thematic analysis.
KEY RESULTS: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals.
CONCLUSIONS: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with co-morbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.
Having end of life conversations ...
(Posted April 2013)
Dr Dale Larson Ph.D. (Professor, Dept of Counseling Psychology, Santa Clara University, San Francisco) was interviewed on National Radio in March about end of life matters and talking about and facing end of life.
Dr Larson spoke about how courage is involved, authenticity is required, secrets should be dealt with, and conversations should be earlier rather than later (not when person getting weaker).
He has also written a book called 'The Helper's Journey: Working with people facing grief, loss and life-threatening illness'.
Listen to the interview here.
Instructions for performing a self breast exam
(Source: The American Cancer Society)
According to the American Cancer Society, breast cancer can be diagnosed early on with the use of routine mammograms, clinical and breast self-exams. Finding abnormalities in the breast in the early stages of cancer can greatly reduce the risk of severe complications or even death. When a physician diagnoses breast cancer, several factors are considered when determining the prognosis. Treatment is typically more successful in women who find breast cancer early on. Making use of these cancer detecting tests can save the lives of thousands of women each year. It could also potentially save even more women as they realize the importance of early breast cancer detection and the tests that diagnosis it.
Read more and find comprehensive instructions here.
Surviving is traumatic too - doctors are just beginning to understand post traumatic stress syndrome for cancer survivors.
(April 2013 - Source:Web MD site)
Heather Miller writes on Web MD
"I’ve got a close friend whose sister had breast cancer 15 years ago. Even now—decades on, with neither symptoms nor a recurrence—this sister constantly mentions her breast cancer. It’s like she’s stuck in an endless feedback loop: she has survived cancer, and yet she can’t get past it. It’s always there, top of mind, vanquished and yet still terrifying, old news and yet always today’s headline.
I’ve never even met my friend’s sister; she lives in a city hundreds of miles away from my home. But I bet if I were to sit down with and talk with this fellow survivor for a while, she’d show signs of post-traumatic stress syndrome."
Read more on the Web MD site.
Study finds genetic link to lymphoedema
(April 2013 - Source: Medscape)
Breast cancer survivors who develop lymphoedema after treatment for their cancer have a genetic predisposition to do so, according to a new study published in PLoS ONE.
The study also found that the risks of developing lymphoedema increased significantly for women who had more advanced breast cancer at the time of their diagnosis, a high body mass index, or increased number of lymph nodes removed.
The results of the study are hypothesis generating, but if the link is confirmed in other studies and a mechanism for the development of lymphoedema is found, the hope is that a therapy will be found as well, lead author Christine Miaskowski, PhD, from the University of California, San Francisco, toldMedscape Medical News.
The exact prevalence of lymphoedema after breast cancer treatment is unknown, but up to 56% of women who undergo breast cancer surgery develop lymphoedema within 2 years, according to the National Cancer Institute, Dr. Miaskowski said.
Four Genes Involved
The study evaluated 155 women with lymphoedema in an upper extremity (arm or fingers) and 387 women with no lymphoedema. The women underwent bioimpedance spectroscopy to measure their lymphoedema and also had genomic DNA extracted from blood samples.
The researchers found associations between lymphoedema and 4 genes known to play a role in the development of lymphoedema (lymphocyte cytosolic protein 2 [rs315721], neuropilin-2 [rs849530], protein tyrosine kinase [rs158689], and vascular cell adhesion molecule 1 [rs3176861]) and 3 haplotypes (Forkehead box protein C2 [haplotype A03], neuropilin02 [haplotype F03], and vascular endothelial growth factor C [haplotype B03]) involved in lymphangiogenesis and angiogenesis.
"These findings are of no use to clinicians just yet," Dr. Miaskowski said. "We need to confirm our findings in other studies, and if we do, the hope is that we will discover the mechanism and then a therapy."
Currently some half a million breast cancer survivors have lymphoedema in the United States. "This is not an insignificant problem, and women suffer greatly. My dream is if we can figure out the genetic profile and identify women at high risk, we could do some prophylaxis, perhaps work immediately after surgery with these women, promote exercise, avoid trauma, and my guess is we could reduce the incidence," she said.
The study was funded by the National Cancer Institute of the National Institutes of Health. Dr. Miaskowski has disclosed no relevant financial relationships.
Researchers can now measure the risk of heart damage during radiation therapy for breast cancer
Researchers have for the first time calculated by how much radiation therapy for breast cancer increases the risk of heart disease and the findings can now be used by doctors to help treat patients more appropriately.
The research, by scientists at the University of Oxford and in Scandinavia and published in the New England Journal of Medicine, looked at more than 2,000 women treated with radiation therapy in Denmark and Sweden.
They found that the risk of radiation-related heart disease was real, but that for most women it was small. Kate Law, director of clinical research at Cancer Research UK: “Radiation therapy is a very effective treatment for breast cancer and has played a major role in improving survival for the disease to over 85 per cent. This research means that doctors will be able to reassure most women that the risk of heart disease from radiation therapy is small. Also, for the first time, women who would be at substantial risk if they had radiation therapy can be identified and alternative techniques considered
Read more at the Breast Cancer Aotearoa Coalition site.
Australasian Breast Cancer Surgeons Throw Support Behind New Lymphoedema App
Breast Surgeons across Australia & New Zealand have this week thrown their support behind a locally produced smartphone app for cancer survivors.
The new app developed by Brisbane based Physiotherapist, Kelly Foote is about breast cancer related Lymphoedema, a well known side effect of breast cancer treatment and one which has significant impact on survivors’ physical and emotional wellbeing.
Breast Surgeons Australia and New Zealand Incorporated general manager, Charles Baker, commended the user friendly design of the smartphone app.
“The app will be of great value to any woman affected by breast cancer and who has undergone lymph node surgery” Mr Baker said.
The Lymphoedema breast cancer app is a complete, mobile resource for women and a step by step guide on how to self monitor for the condition.
Release of the world first app coincides with March Lymphoedema awareness month, a campaign which aims to promote awareness of the early signs and symptoms of Lymphoedema among high risk groups.
Dr Chris Allan, a Brisbane based breast cancer surgeon praised the app as a modern approach to personalised health care and endorsed it as a tool to promote awareness.
“This App is a source of practical information regarding all aspects of lymphoedema education and provides a simple and comprehensive tool for ongoing monitoring,” Dr Allan said.
Lymphoedema cannot be cured if it develops but early identification and treatment results in improved outcomes and reduces the impact of the condition on cancer survivors quality of life.
“Approximately 1 in 5 women with breast cancer will develop Lymphoedema and so this is a genuine concern for many women,” Ms Foote said.
She said that all women with breast cancer should receive quality and timely education about the early signs and symptoms of Lymphoedema.
“I wanted the App to be an “on the go” resource and self management tool, providing women with vital Lymphoedema information at any time and from anywhere,” Ms Foote said.
The App is available on both ITUNES and Google Play and is compatible for use : IPhone 3G, 3GS, 4, 4S, 5 and IOS 6 operating system for iPad Galaxy Note 2 and S3.
For more information on the Lymphoedema Breast Cancer App- Kelly Foote, App developer is available for interview/panel discussion via: phone +61 422 942 250
**Kelly Foote is an Australian Lymphoedema trained Physiotherapist, with extensive experience in the diagnosis and treatment of Lymphoedema associated with Breast Cancer. Kelly is a professional member of the Australasian Lymphology Association and has educated hundreds of women about Lymphoedema and how to minimise their risk of developing the condition after breast cancer treatment.
As a cancer care Physiotherapist Kelly has been a representative on Statewide Cancer Council Committees and Lymphoedema expert panels.
Eye to eye: the doctor/patient relationship in Stage 4 breast cancer
(Article on The Huffington Post site - from Lisa Bonchek-Adams)
Everything changes with a diagnosis of Stage 4 cancer. I don't really think that's an overstatement. My relationship with my oncologists has, by nature, changed as well. With Stage 4 one of the things that's especially important is good communication between physician and patient. It always is, but now two of the topics that are imperative to review at each meeting are side effects of medications/chemo and symptoms I'm having (especially pain).
Read more ...
(Posted April 2013)
Study shows more breast cancer at early age
The incidence of advanced breast cancer among younger women aged 25-39 may have increased slightly over the last 30 years, according to a study released Tuesday. But more research is needed to verify the finding which is based on an analysis of statistics, the study's authors said.
The study, published in The Journal of the American Medical Association, found that advanced cases climbed to 2.9 per 100,000 younger women in 2009, from 1.53 per 100,000 women in 1976 — an increase of 1.37 cases per 100,000 women in 34 years. The totals were about 250 such cases per year in the mid-1970s, and more than 800 per year in 2009.
Read more in this article from the NY Times online.
NZ women trial new targeted radiation therapy for breast cancer
New Zealand women are among the world's first to trial a new development for breast cancer which drastically cuts treatment to days instead of weeks.
It is done by using a plastic coil that costs just $500.
The technology allows doctors to target radiation therapy treatment more accurately than before.
To read more and view a short video, visit the TVNZ website here.
The Dr. Susan Love Research Foundation's Love/Avon Army of Women
Health of Women Study (HOW)
(Taken from the Army of Women website)
"We finally have a study for every member of the Army of Women. We have been working hard to develop a study for everyone and we are pleased to invite ALL of you to join us in a new approach to research that will aim to tell us HOW breast cancer starts and HOW to prevent it: the Health of Women Study (HOW)!
"We already have over 18,000 people who have signed up, so if you are part of the HOW Study, a big thanks from all of us. If you haven't sign up, this is a reminder to make breast cancer history by signing up TODAY. Don't forget to invite your friends and family to participate as well.
"EVERY WOMAN can take part in HOW with or without a breast cancer diagnosis. We will also accept men living with breast cancer or at high risk for breast cancer, as we think their cases can shed important light on this disease. It doesn't matter where you live, the United States, Europe, Australia, ANYWHERE, we want to hear from you. You don't even have to leave your house to participate-HOW is an online study!"
To find out more or to register for the study, visit the HOW study web page.
What does it mean to live with a diagnosis of secondary breast cancer?
(Taken from Breast Cancer Care.org website)
13 October was secondary breast cancer awareness day.
Managing ongoing treatment, symptoms and side effects, roles and relationships, and making important life decisions much earlier than expected: living with secondary breast cancer can involve a huge number of issues that aren't always apparent to friends, family and colleagues. Good days and difficult days – everyone’s experience is different.
Find out what each day of the week holds for seven people living with secondary breast cancer, by watching our series of short films. And if you’re living with secondary breast cancer, tell us about a day in your life.
We’ve also published ‘A day in the life’ as a special limited edition booklet to mark the Awareness Day. Order your free copy today.
Jane Hatfield, Head of Policy and Research at Breast Cancer Care, has created a video about secondary breast cancer and what we, and you, are doing to raise awareness about the subject - watch it below.
How breast cancer made me a Yogini - from Amanda Nixon
(Taken from: Huffington Post, Healthy Living Sept 29 2012)
When I entered my first yoga class a few years ago, I never thought in my wildest dreams that one day I would aspire to be a yoga instructor. I distinctly remember my response to my first yoga class: nervous, uncomfortable, and worried I wouldn't be able to accomplish the complex moves. To my surprise, I was immediately calmed by the encouragement and compassion I received from the teacher, who, like me, is a breast cancer survivor.
My entire life I thought yoga was for smelly hippies, fitness buffs, and pretzel-like flexible people. Eww! Gross! I steered clear of those types and assumed I wasn't fit enough to give yoga a whirl myself. But today, I am proud to tell you I am well on my way to receiving my yoga teacher certification.
At the age of 27, I was diagnosed with an extremely rare, aggressive form of breast cancer called Inflammatory Breast Cancer (IBC). Immediately following my diagnosis, my life became a whirlwind of chemotherapy, radiation treatments, a mastectomy and reconstructive surgeries. As a result of my surgeries (and flying on airplanes) I developed a condition called Lymphedema that causes my hand and arm to swell. I desperately needed something to improve not just my body, but my mind and spirit too. My mom and my boss recommended I try yoga.
It wasn't until I stepped foot into my first Cancer Therapy Yoga class that something clicked. Here I was, able to reconnect with my body and focus my mind, surrounded by other beautiful breast cancer survivors. The class was fun, restorative, and gentle enough for beginners. I was in a safe place where I felt accepted, supported, and loved. From then on, I was hooked.
There are numerous studies to support the benefits of exercise and yoga for cancer patients, and I am proof of these. Yoga has helped me manage stress, improve my sleep and digestion, increase my range of motion, reduce pain, and most importantly, stay healthy (aka help avoid a recurrence of breast cancer).
As a firm believer in the power of yoga to fight breast cancer, I recommend the practice to the hundreds of breast cancer survivors I support in my role as survivor outreach advocate at Keep A Breast. Claire Petretti, my yoga for cancer recovery teacher, developed a video to help cancer patients recover from their surgeries and journeys. My appearance in the DVD is an example of my commitment to helping others access yoga even if they are not physically capable of leaving their homes.
During my transition from yoga newbie to yoga teacher, I have had a few key realizations:
1. I love dating my mat. I have a date with my yoga mat each day. My yoga mat would never ask me to "go Dutch" or take me for a "long walk on the beach." All my yoga mat wants to do is support me. Yoga is a personal practice, and I have the opportunity to do whatever work I need each day. This might mean mediation or deep breathing or forward bends or grounding poses. I am my own best teacher.
2. Yoga offers a sense of belonging and unity. Looking around at all of the other teacher trainees, I see a vast range of goals, strength, aspirations, and dreams. My personal goal is to work with breast cancer patients, but we all come to practice, learn, teach, and accept each other as we are. My experiences with breast cancer surgeries and classes are simply my unique contributions.
3. You can smile in yoga postures. Yoga is fun. After a few days of Yoga Vitality and Yoga Delight, or, as I adorningly call them, Tough Yoga classes, I realized how trying to keep up with everyone else caused tension. I decided to ease up. Pay attention to my breathing. Accept myself. I did not need to speed through, compete, or feel inadequate -- that would be counterproductive. I decided to smile instead. This may have turned into a full-blown laugh at times, but just smiling helped me loosen up. I ended up carrying this smile with me throughout the day, which happens to be a fun side effect.
4. We are perfect just the way we are. Each day, each person feels different. I love to be able to reconnect myself to my body. I have had four breast surgeries and surgery to remove my stomach tissue and muscle. My body has a pretty interesting story to tell. Some days it is shouting that narrative, other days whispering it to me. I need to tune in and turn up the volume. Connect with my body. Love my body. Love my boobies. Yoga allows this. Yoga is about easing suffering and accepting self.
5. Yoga on the mat is just as important as yoga off the mat. Since I started teacher training I have a greater awareness of those around me, and how connected we are. Goodness is our true nature, so why not be as good as I can? Speak with yoga lips and see with yoga eyes. We are all pretty awesome people. Yoga has helped me tune in to the important stuff among all the insignificant. I've caught myself thinking, "Is this gossipy?" and "Is this helpful?" more than ever before. I now try to leave the lightest footprint by purchasing only what I really need. I aspire to live my yoga each day.
Namaste, Amanda Nixon
An offbeat way to fight cancer: with photos and a tutu
(Taken from NPR)
Bob Carey writes on his website that the Tutu Project started "as a lark." Really, the fanciful self-portrait series had more serious origins. It started as a way of coping with his wife's ongoing battle with cancer.
"I have days when I'm exhausted," his wife, Linda, writes in a recent email, "but at this point in the project it's hard to differentiate whether it's the chemo that's making me tired or the long hours that I've been working!"
Carey has been taking the photos since Linda's initial diagnosis nine years ago. "I began taking the images to the cancer center, and the ladies that were with me in treatment really enjoyed them," Linda recalls. "It took us away from the reality of our situation for a moment, and made us laugh."
Years later, the pet project has become a small sensation. The couple is working to self-publish a book of the photos; the proceeds will go to breast cancer organizations.
"Oddly enough," Bob Carey writes on his website, "her cancer has taught us that life is good, dealing with it can be hard, and sometimes the very best thing ... we can do to face another day is to laugh at ourselves, and share a laugh with others."
Nix support groups: Men find other ways to cope with partner's breast cancer
While it is the woman who becomes the prime focus -- her anxiety, how she endures treatment and the lingering fear of recurrence -- male spouses go through their own form of emotional hell when faced with the diagnosis.
And how they cope can differ substantially from women whose male partners deliver similar news about their own cancer threat, says Wendy Duggleby, a professor of nursing at the University of Alberta, who studies the role of hope in men’s ability to support their wives through cancer.
“We were surprised at the huge impact that their wives’ diagnosis of breast cancer had on them,” Duggleby said from Edmonton.
To read more, visit the Star News webpage.
Pirates of the Chemotherapy - a new play by Paul Schutte
There’s nothing funny about breast cancer. But those affected by it can choose to treat it with humour.
Nancy is an organizer – she has her rules and everyone in the group has to follow them. Doris is the crusty one, naming her breasts Laverne and Shirley and providing much of the show’s comic relief. Karen is the quiet one, overwhelmed by it all. Peace is a throwback to the 60s, proud owner of an inner princess who considers her cancer a blessing. Winnie is hardened and bitter, a real glass-half-empty type. And everything’s new to Judith, who at first looks at her cancer as a nuisance interruption to her very busy schedule.
Despite their differences, the girls in the group bond together, and become pirates of the chemotherapy – donning eye patches and clutching swords – as they take on Karen’s husband after he leaves her and stiffs her with all the household bills.
The show deals with the side effects and aftermath of breast cancer and chemotherapy – the loss of body parts and functions, the loss of hair, the loss of intimacy. Ultimately, Pirates of the Chemotherapy offers a message of hope while stressing the importance of early detection.
The travelling pants are coming to NZ!
Recent US poll findings prove value of talking to other breast cancer survivors
Award-winning actress and 9-year breast cancer survivor Edie Falco has become a spokesperson for American breast cancer organization Y-Me which offers a national toll free hotline and comprehensive website focused on the needs of survivors and patients.
Lesley, Wendy and Fiona are taking over from Jenny Short, Cathy Sandy and Maryanne Abplanalp who have had led the North Shore group so well for a long period of time. Geraldine Stayte will remain with the group as a Coordinator.
We thank our 'retiring' Coordinators for their energy, enthusiasm, commitment and empathy and for their support of the many women who have attended - and continue to attend - this vibrant group 'north of the bridge'! and we look forward to working with our new recruits!
Monthly support groups? Internet based forums and resources? Blogs? Social get-togethers over coffee or dinner? Guest speakers at quarterly events, providing information about subjects relevant to women from the ages of 20-35? Day-long retreats and workshops? Skype discussion groups?
If you are a young woman (aged 20 - 35) diagnosed with breast cancer, we would like to hear from you.
Please email us and tell us your ideas. We'll keep in touch with you and together we can work towards providing the support and resources that you need.
It's 'a work in progress.'
Meantime, have you visited the website of Shocking Pink, an on-line NZ resource for younger women? It's great - pay a visit soon ...
We farewell BCS Chair Deirdre Parr
From Acting BCS Chair Misha Crosbie
It was with regret that we accepted the resignation of Deirdre Parr from the position of BCS Chair and the BCS Committee want to acknowledge the extensive contributions made by Deirdre in her position as Chair for the past two years. (Committee photo, L to R: Debbie Morrow, Josie Stanley, Deirdre Parr, Misha Crosbie, Jennifer Woodroofe).
For personal reasons she has had to step down from the Chair and active participation on the Committee. Deirdre has given tirelessly of her many talents and has been a wonderful representative for us at public functions. We remember with affection the “Deirdre Live “ visits last year in which she took the time to hear from all the members of our various groups and bring the concerns and ideas back to the Committee for consideration and action.
Deirdre made a poster presentation at the Reaching to Recovery Conference in Taiwan last year and was encouraged to submit a proposal for a presentation at the next RTR Conference in 2013. This is certainly a testimony to the talent she displayed in representing the bicultural nature of New Zealand and the implications of that in providing support services to breast cancer survivors.
We wish Deirdre well and we know that, as it was for her following in Marie Goudge’s footsteps, it will indeed be hard to step into her shoes. And we know without a shadow of a doubt that each new Chair brings into this volunteer position great heart and many gifts and above all, the gift of time and dedication in supporting the growth of our services. Thank you, Deirdre for your commitment and considerable talents. BCS has greatly benefited from your generosity.
Members enjoy some ‘March Mad Hatter Madness’!
There were raffles (including a special Easter raffle prize), plenty of laughs and lovely sweet treats to enjoy over a hot cup of tea.
The afternoon was so successful, Members are planning the next social get together—perhaps a Shipwreck Party—for later in the year. $87 was raised for BCS and we thank all those who attended for their kind donations—and a very special thank you to our Ambassador Alice Worsley for helping to make the event such fun for all.
A special 'thank you' to Debbie Morrow and Jennifer Woodroofe for their organisation of this event for BCS.
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