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If you have secondary breast cancer it’s likely that your needs, questions and concerns will be different from women with early breast cancer. We hope this list of resources, recommended by women living with secondary breast cancer, provides you with some useful sources of information and support.
'One of the major ways I cope is to understand my cancer as much as possible and to work with my doctors to make sure I am receiving the best possible treatment - and make sure that no stone is left unturned. I’ve also realised that we can only do our best and then leave the rest in the lap of the Gods. We all have to die sooner or later - and we need to make the most of life while we are here.' Veronica, Queensland
Books, brochures, cassettes or CDs
The Inside Story (2006- )
Author/ Publisher: Breast Cancer Network Australia
Description: A new four-page supplement to the Beacon. Available from issue 36, Winter 2006.
Messages of Hope and Inspiration from Women Living with Advanced Breast Cancer (2006)
Author/ Publisher: Breast Cancer Network Australia
Description: Hearing that breast cancer has spread can be frightening and devastating news – thoughts of death and dying are often not far away. Our members share their stories of living with secondary breast cancer in the hope that they will give you the inspiration to face your fears and to live your life with hope and determination. Australian content.
You're Not Alone (2008)
Available from: Mary O'Brien or Pia Hirsch
Advanced Breast Cancer Group
First Floor, 205 Boundary Street
West End
Brisbane 4101 Phone: (07) 3217 2998
Email:
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Internet: www.advancedbreastcancergroup.org
or through The Cancer Council Helpline 131120 for Queensland residents.
Decription: This is a story about the experiences of three women, living with secondary breast cancer. They talk about what it was like when they were first diagnosed with this life threatening illness, and their journey into unchartered territory as they learned to cope with the support of their family, friends and other women in a professionally led support group. This film was produced by the Advanced Breast Cancer Group, (Brisbane), in collaboration with the Griffith Film School, Griffith University and funded by Queensland Health. It was developed as a resource for women diagnosed with secondary breast cancer, their partners and families and for health professionals involved in their care.
A Guide for Women with Metastatic Breast Cancer (2001)
Author/Publisher: National Breast Cancer Centre
Available from: National Breast Cancer Centre (1800 624 973 – voicemail) / State Cancer Councils (13 11 20)
Description: This book is a comprehensive resource for women who have cancer that has spread to other parts of the body. It provides information and support for women, their families and friends about treatment and care. The booklet is based on the evidence included in the Clinical Practice Guidelines for the Management of Advanced Breast Cancer. Australian booklet.
Clinical Practice Guidelines for the Management of Advanced Breast Cancer (2001)
Author/ Publisher: National Breast Cancer Centre
Available from: National Breast Cancer Centre (1800 624 973 – voicemail)
Description: The Clinical Practice Guidelines for the Management of Advanced Breast Cancer have been developed by a multidisciplinary working party, with cooperation from a range of contributors. The guidelines are primarily intended for use by all health professionals involved in the management of women with secondary breast cancer. This book, based on the best available evidence, covers psychosocial, clinical and quality of life issues. It also contains quotes from, and photos of, women with secondary breast cancer to highlight their experiences. Australian guidelines.
When Cancer Won’t Go Away: For People Whose Cancer has Advanced (2000)
Author/Publisher: The Cancer Council Victoria
Available from: The Cancer Council Victoria (03) 9635 5000 (or 13 11 20 if calling within Victoria)
Description: This booklet is for adults who have a cancer that is not likely to be cured and who are looking for information and support. It offers general information about secondary cancer, telling you what might happen and where help can be found. Australian booklet.
When Cancer Won’t Go Away: For Carers of People Whose Cancer has Advanced (2000)
Author/Publisher: Cancer Council of Victoria
Available from: Cancer Council of Victoria (03) 9635 5000 (or 13 11 20 if calling within Victoria)
Description: This booklet is for carer’s of adults who have a cancer that is not likely to be cured and who are looking for information and support. It offers general information about secondary cancer, telling you what might happen and where help can be found. Australian booklet.
Supportive Cancer Care: The Complete Guide for Patients and their Families (2001)
Author: Ernest H Rosenbaum MD, Isadora R Rosenbaum, Alan Glassberg
Publisher: Sourcebooks Trade
Available from: Bookstores and Libraries
Description: While not written specifically about secondary cancer, this book covers cancer care through all phases of the disease. Described as the National Cancer Institute Guide, it is written for patients and families to help them understand cancer and how to actively participate in their care. Answers questions concerning a cancer patient’s physical, psychological and spiritual needs. Not Australian.*
I Still Buy Green Bananas: Living with Hope, Living with Advanced Breast Cancer
Publisher: Y-me National Breast Cancer Organization Chicago
Available from: State Cancer Councils (13 11 20) OR
www.y-me.org/resource_library/greenbananas.pdf
Description: This booklet offers practical advice and personal stories on coping with a diagnosis of secondary breast cancer and living life fully with cancer each day. Not Australian.*
Holding Tight, Letting Go: Living with Metastatic Breast Cancer (1997)
Author: Musa Mayer Publisher: O’Reilly and Associates
Available from: Bookstores and libraries
Description: This is a book about life, the daily lives of ordinary people confronting serious illness. Of the dozens of books dealing with breast cancer, few discuss the realities of secondary disease. All aspects of dealing with the disease are covered in this book: coping with the shock of recurrence, seeking information, making treatment decisions, and communicating effectively with medical personnel. Getting emotional support from other patients and friends and working on relationship and family issues are often as important as managing the side-effects of treatment and the pain and symptoms of disease progression. Open discussions about approaching the end of life often lead to a profound inquiry into ways of keeping hope alive and finding meaning in the midst of adversity. Not Australian.*
Advanced Breast Cancer: A Guide to Living with Metastatic Disease 2nd edition (1998)
Author: Musa Mayer Publisher: O’Reilly and Associates Inc
Available from: Bookstores, libraries and www.patientcentres.com/breastcancer
Description: This book deals honestly with the realities of living with secondary disease, yet offers hope and comfort. All aspects of facing the disease are covered, including: coping with the shock of recurrence, seeking information and making treatment decisions, communicating effectively with medical personnel, finding support, and handling disease progression and end-of-life issues. A comprehensive guide. Not Australian.*
Dr Susan Love’s Breast Book, 3rd edition, revised (2000)
Author: Dr Susan M Love Publisher: Perseus Book Group
Available from: Libraries, bookstores, www.amazon.com
Description: A comprehensive guide to breast cancer, treatment and living with breast cancer. The 'Bible' for many women wanting to learn more about breast health and breast cancer. Contains useful information about secondary breast cancer. Not Australian.
When the Woman You Love has Advanced Breast Cancer (audio cassette/CD)
Author/Publisher: National Breast Cancer Centre
Available from: National Breast Cancer Centre (1800 624 973 – voicemail) / State Cancer Councils 13 11 20
Description: Provides information to men about supporting a woman through secondary breast cancer. Men who live with women who have breast cancer recurrences or secondary disease speak openly about the challenges they face as partners, parents and carers. Health professionals also describe aspects of the management of secondary breast cancer. Australian.
When Someone has a Very Serious Illness: Children Can Learn to Cope with Loss and Change (1992)
Author: Marge Heegaard Publisher: Woodland Press
Available from: www.amazon.com.au; www.everycloud.com.au
Description: Written for children aged 9-12 years, this book will help families communicate and evaluate a child’s understanding and feelings about change while teaching basic concepts of illness and healthy coping skills. Encourages the child to do drawings for self expression. Not Australian*
The Needs of Children of Mothers with Advanced Breast Cancer (1997)
Authors: Jane Turner, Pam McGrath
Publisher: National Breast Cancer Center
Available from: National Breast Cancer Centre (1800 624 973 – voicemail); State Cancer Councils (13 11 20)
Description: A report commissioned by the National Breast Cancer Centre. Australian report.
What Will I Tell the Children? Information for Parents Who Have Been Told They Have Cancer
Authors: Cynthia Holland, Nichole Vanos (Royal Women’s Hospital Gynaecological Cancer Research Centre)
Publisher: The Cancer Council Victoria
Available from: Royal Women’s Hospital Melbourne or http://128.250.188.72/gcrc/patinfo/parents.htm
Description: Help with how to talk to your children about your cancer. From infancy to 18 years. Australian brochure.
She’s got what? A Story about Cancer
Authors: Carrie Lethborg, Angela Kirsner
Publisher: St Vincent’s Hospital Oncology Unit
Available from: State Cancer Councils (13 11 20) OR St Vincent’s Hospital Foundation (03) 9288 3364
Description: For children, breast cancer in the family can bring massive changes, a huge upheaval to their lives and to their sense of security. This book deals with some of the issues which arise when a mother becomes seriously ill. The story provides events and characters to respond to, talk about and learn from, and helps children to discuss their concerns and fears. Australian book.
Supporting a Person Who Needs Palliative Care
Author: Peter Hudson PhD
Publisher: Palliative Care Victoria
Available from: Palliative Care Victoria (03 9662 9644) or www.pallcarevic.asn.au/pdf/AGFF_order_form.pdf
Description: This carers booklet provides a comprehensive, empathetically written, resources about the common issues facing carers during a journey with someone facing an incurable progressive illness. The information is presented in a manner that will empower them in their role as carer and minimise the stresses present during their relative's illness.
Lost for Words – How to Talk to Someone with Cancer
Author/Publisher: BACUP
Available from: State Cancer Councils (13 11 20) or www.cancerbacup.org.uk/info/talk.htm
Description: Offers advice and practical suggestions for family and friends to talk to, and support someone dealing with cancer. Not Australian*
Ordering books on the internet
www.everycloud.com or www.amazon.com
Australian Services
Breast Cancer Network Australia
www.bcna.org.au or 1800 500 258
Description: Breast Cancer Network Australia's role is to empower, inform, represent and link together Australians personally affected by breast cancer. It is driven by women who have themselves experienced breast cancer. It conducts projects to raise awareness in the community, such as its Field of Women silhouettes. It empowers those affected by providing information through its free national newsletter, The Beacon, and by linking them with treatment and support services, and with each other. It influences key decision-makers to ensure that the needs and issues of people affected by breast cancer are raised and addressed. This site offers personal stories, copies of The Beacon, the Network’s national magazine, information about breast cancer-related events and links to useful sites. Australian site.
National Breast Cancer Centre’s Breasthealth link
www.breasthealth.com.au or 1800 624 973
Designed as a one-stop shop for information about breast cancer in Australia, this site provides information on risk factors, early detection, treatment, statistics, resources and research. There is also information on the Centre’s publications and media releases, and links to other Internet sites. There are also details of support groups in Australia and online electronic mailing lists which you can join, and information on psychosocial aspects of breast cancer. A number of reports relevant to secondary breast cancer are available on this site. Australian site.
The Cancer Council's Cancer Helpline
13 11 20
The Cancer Helpline is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. Specially trained staff can answer questions about all apsects of cancer. They can also assist with practical and emotional support and advise callers about specific services appropriate to their needs and location. This service operates Monday to Friday from 9am to 5pm and can be accessed for the cost of a local call. Some states have extended hours, some have health professionals on staff, and some have multilingual services.
Palliative Care Australia
www.pallcare.org.au or (02) 6232 4433
This website provides details of palliative care services in all areas of Australia.
CANTEEN
1800 639 614
CanTeen, the Australian Organisation for Young People Living with Cancer, is a national support organisation for young people (ages 12-24) living with cancer; this includes patients, siblings, bereaved siblings and offspring. Members are able to participate in camps, recreation days, seminars, workshops and most importantly share their hopes and fears, partake in decision making, meet new friends and have fun together.
My Parents' Cancer
www.myparentscancer.com.au
Interactive website for 13-19 year olds. To help families communicate about cancer and assist young people with their emotions.
Boys Do Cry
www.breasthealth.com.au/boysdocry
Provides information to help men manage when someone they love has breast cancer.
WEBSITES – National
Here and Now Australia Breast Cancer Forum
www.bcaus.org.au
This website is a source of information regarding secondary breast cancer plus a way to find support and understanding from Australian women living with secondary breast cancer. This forum was originally created in 2005 for a small group of women living with secondary breast cancer who attended BreaCan’s ‘Here and Now’ support group in Melbourne. They are now welcoming members from all over Australia to join their forum. They welcome women who are living with secondary breast cancer plus women who have had early breast cancer.
Advanced Breast Cancer Group
www.advancedbreastcancergroup.org
The Group for Women with Advanced Breast Cancer have launched a website which is intended as a resource and support for:
- women with advanced breast cancer, and their partners and families already involved in the support groups offered by this Queensland service
- all Australian women and families who would like to know more about these services
- all Australian women and families who would like to benefit from sharing their experience of living with advanced breast cancer, and learning how others approach this challenge
- all Australian friends of families affected by advanced breast cancer.
The website also provides forums or on-line support groups where women can post questions and provide and receive support from others affected by the disease.
WEBSITES - International
BCMets.org - Metastatic Breast Cancer Information and Support
www.bcmets.org
This American website is a forum where women with secondary breast cancer can post a question. Since February 2000, many women have shared their experiences of living with secondary breast cancer on the mailing list. The BCMets ‘book of knowledge’ provides information about secondary breast cancer based on women’s contributions over the years. The website does not provide medical advice.
BACKUP
www.cancerbackup.org.uk
Information on secondary breast cancer in general and information about specific sites of secondaries. Also provide information regarding the support needs of children of parents with breast cancer. English site.*
BreastCancerCare
www.breastcancercare.org.uk
Information on secondary breast cancer in general and information about specific sites of secondaries. Also information about various treatments for secondary breast cancer. English site.*
Patient-Centered Guides Breast Cancer Center
www.patientcenters.com/breastcancer
This resource centre has been created especially for those with secondary breast cancer - individuals who have been initially diagnosed with Stage IV cancer or who are facing a recurrence. Has sections highlighting current news and recent breast cancer related articles, resources for researching your cancer and treatment, resources for emotional support. American site.*
BreastCancerinfo.com
www.komen.org/abc
This site provides detailed information about breast cancer including the management of secondary breast cancer. American site.*
MAMM
www.mamm.com
A consumer magazine devoted to the needs of women diagnosed with breast and reproductive cancer. The web site also offers resources and links to various breast cancer organisations. American site.*
CancerSymptoms.org
www.cancersymptoms.org
This site provides information about cancer-related symptoms such as fatigue, pain and depression with suggestions for managing these as well as tips on talking with family, health professionals and employers. American site.
People Living with Cancer (American Society of Clinical Oncology)
www.plwc.org
This site provides information about breast cancer, treatment, coping (including information on depression and anxiety), resources and discussion groups. Also has information about talking with your doctors. American site.
National Centre for Complementary and Alternative Medicine (CAM)
www.nccam.nih.gov/health
This site provides information about complementary and alternative medicines, including information about specific drugs, alerts, research and links to other relevant sites. American site.
Memorial Sloan-Kettering Cancer Centre Information Resource: About Herbs, Botanicals and Other Products
www.mskcc.org/mskcc/html/11570.cfm
This site provides evidence-based information on herbs, botanicals, vitamins and other supplements, including information about effects, side-effects, drug interactions and other details of each product listed as well as links to scientific research. American site.
Dr Stephen Barrett’s Quackwatch Website
www.quackwatch.com
This site has a lot of information on a wide range of unproven remedies.
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