Living with Secondary Breast Cancer |
Welcome to our page for those with secondary breast cancer. If you are reading this you may have been diagnosed with secondary breast cancer yourself or know someone with a recent diagnosis. We hope that the information and stories you read here will help and encourage you.
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Secondary breast cancer – what is it?
In some women, cancer cells break away from the primary breast cancer and spread to other parts of the body via the bloodstream or lymphatic system. (The lymphatic system is part of the immune system − the body's natural defence against infection and disease. It is a complex system made up of organs, such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes throughout the body are connected by a network of tiny lymphatic ducts.)
Even the best treatment for early breast cancer doesn't always remove every cancer cell. Such cells may be inactive for years before they begin to grow. Most commonly, secondary breast cancer develops from cells that were left behind after treatment. Other times, cancer cells start to travel around the body before the tumour in the breast is found and treated. If it is large enough to see on a scan or x-ray, secondary breast cancer may be diagnosed at the same time as the primary breast cancer. Sometimes, less commonly, a secondary tumour is the first symptom to be found and diagnosed.
When cancer cells that have spread to other organs begin to grow and cause symptoms this is known as secondary breast cancer, but may also be called metastatic breast cancer, mets, secondaries or advanced breast cancer. The original cancer in the breast is known as ‘primary' or ‘early' breast cancer. The new tumours are often called metastases. They may occur in the liver, bones, lungs and sometimes the brain as well as other less frequent sites.
Treatment for secondary breast cancer
There are treatment options to control secondary breast cancer but they are not a cure. Many women live with secondary breast cancer for years and often look after their family, go on holiday, even work or do sports - much like other people, although with close regard to their level of wellness.
If you have secondary breast cancer, your cancer specialist will discuss what treatment is best for you. This will depend on where the cancer has spread to, and what treatment you've had before. Increasingly drugs used in the treatment of breast cancer are becoming more targeted to the individual as the varied nature of the disease is better understood. Other factors that your specialist will consider include:
- What type of cancer cells you have and how sensitive they are likely to be to treatment.
- Your age and how well you are.
- How much treatment you want to have.
Clinical trials
Some women want to try every treatment they can and to take part in clinical trials of new treatments. We recommend you gain as much information about the likely benefits and side effects of the treatment being studied, and the treatment it is being compared with, from your oncologist before you start. It is a time when information is crucial to making the best decisions.
Much of the progress of the last 40 years has come from clinical trials. Medical staff recognise that trial participation is attractive to many patients and they should be prepared to discuss this as a legitimate option whenever appropriate, even if it means transferring their patient to another clinic. Every cancer treatment has side effects, and some women are prepared to put up with these if there's a chance that the treatment will help them to live well for longer. Other women decide at some point that they've had enough treatment and prefer to have palliative care to relieve their symptoms and help them with any practical or emotional problems they may be having.
There's no right or wrong way to deal with secondary breast cancer. Treatment is something you'll probably want to talk about with your family and friends, as well as your cancer specialist. It's a very personal journey and the decisions are yours.
Read more about clinical trials - from BCNA and the Australian New Zealand Breast Cancer Clinical Trials Group
www.bcna.org.au/new-diagnosis/treatment/clinical-trials
Women with secondary breast cancer share their stories
Several women living with secondary breast cancer have offered their stories and insights, and shared aspects of their experiences so that others can read them here.
These women demonstrate great hope and courage in setting new goals for themselves and in living their lives well, and have shown that resilience and creativity can emerge from challenging situations. The stories speak for themselves – we think these women are some of New Zealand’s true heroes. Click on the links below to read their stories.
Jenny - read here
Joan - read here
Kristine – read here
Kashi – read here
Barbara – read here
Darien – read here
Gabrielle – read here
Acknowledgement: Thanks to Jane Bissell who wrote Joan’s, Kashi’s and Gabrielle’s stories. See www.janebissell.co.nz
Feelings and secondary breast cancer
‘Discovering you have secondary breast cancer brings up many different feelings. You may feel completely shocked and numb. After the first shock, it is normal to feel that this is very unfair. You may also feel angry and let down. It may help to know that no one knows yet what triggers some breast cancers to spread. But nothing you have done is to blame.’
(Quoted from Cancer Help UK, Your feelings and secondary breast cancer, and recommended.)
See www.cancerhelp.org.uk/help/default.asp?page=3324#finding
The Cancer Society booklet listed under the heading ‘Resources in New Zealand,’ may be helpful. Some of the websites mentioned on this page have forums where women can get in touch with other women to give and receive encouragement and support. A well regarded New Zealand resource is the Sweet Louise website which has a forum and journal.
PDF Article: The Power of the Mind by Bev Silvester-Clark – read here
In this article Bev shares her thoughts about why some people do well despite a poor prognosis, and lists 12 steps to tap into the healing power of the mind.
PDF Article: Laughing not dancing by Phil Kerslake – read here
Phil is an adherent of the adage that ‘laughter is the best medicine’. Phil ‘walks the talk’: he is a multiple-diagnosis cancer patient and has done a lot of research into the psycho-social aspects of recovering from cancer. Initially this was to aid his own recovery but in recent years he has written a book. See Books below.
PDF Article: The Median Isn’t the Message by Stephen Jay Gould – read here
In this very technical but personal account, Stephen Jay Gould, tells how when facing a grave prognosis, he found great hope from a positive and logical interpretation of the statistics.
Resources in New Zealand
Sweet Louise: www.sweetlouise.co.nz
The organisation, Sweet Louise, offers an online forum and journal to all New Zealand women with secondary breast cancer, as well as restorative and practical free services in the areas where the organisation is operating.
At present Sweet Louise is operating in Auckland, Northland, Palmerston North, Wellington and Christchurch. Watch the website, as the organisation is planning to expand its services nationally. Sweet Louise has featured on TV3's 'Open Door' series in a documentary about the work and services of the organisation, including interviews with women with secondary breast cancer who shared how they are getting on with their lives.
See http://nzonscreen.com/search?search_text=sweet+louise&search=search
Cancer Society of New Zealand: www.cancernz.org.nz
PDF Article: Secondary Breast Cancer, 2006, 84 pages – read here
This helpful booklet aims to provide easy-to-understand and accurate information. We recommend you ring your local branch of the Cancer Society of New Zealand to ask for the booklet. The Cancer Society will also have an information service, support and/or counselling services, accommodation assistance if undergoing treatment out-of-area, and other practical services.
Breast Cancer Network NZ
New Zealand members of Breast Cancer Network (NZ) Inc with secondary breast cancer, please contact us at BCN NZ to receive the BCNA newsletter, The Inside Story, with your copy of Upfront U Kaiora.
Resources on line
As new treatments are developing all the time, it is recommended that the specialist in charge of your treatment be the main source of information about the treatments you are offered, as books and websites can go out of date quickly.
National Breast and Ovarian Cancer Centre (NBOCC) in Australia:
A Guide for women with Secondary Breast Cancer can be downloaded from www.nbocc.org.au/resource-library. This is a large booklet, recently revised, which has lots of useful information.
www.advancedbc.org/ A site founded by Musa Mayer, survivor and author, with wide-ranging information. See Books below.
www.brainmetsbc.org/ is a sister site to the above.
www.advancedbreastcancergroup.org This is the Queensland website of a support group for women with secondary breast cancer.
www.bcna.org.au Breast Cancer Network Australia. See the Secondary Breast Cancer page and links to resources
“If Cancer Comes Back,” www.breastcancer.org/symptoms/types/recur_metast/fear_combk.jsp
Advanced Breast Cancer Community has a helpful list of linked websites http://www.advancedbreastcancercommunity.com
Metastatic Breast Cancer Network offers an information pack
www.mbcnetwork.org/page.aspx?nm=kits http://www.mbcnetwork.org
Books and DVDs
The DVD, You’re Not Alone, is about the experiences of 3 women living with secondary breast cancer. They talk about what it was like when they were first diagnosed, and their journey into uncharted territory as they learned to cope, with the support of their family friends and other women in a professionally led support group. A few free copies of this DVD are available from our office This e-mail address is being protected from spambots. You need JavaScript enabled to view it
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.
New Zealand women can order copies for AU$5.00 each from
Advanced Breast Cancer Group
First Floor, 205 Boundary Street
WEST END QLD 4101
PH 0061 7 3217 2998
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www.advancedbreastcancergroup.org
Feedback on this DVD would be welcomed This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Advanced Breast Cancer: A Guide to Living with Metastatic Disease 2nd edition Author: Musa Mayer, Publisher: O’Reilly and Associates Inc, 1998. Try your library for this book or Amazon.com. Although written in 1998, it remains one of the best books available. Readers should note that treatments have changed since the book was written. Musa has written another book called Holding Tight, Letting Go; A guide to living with metastatic disease. More information here: http://oreilly.com/catalog/advbc/chapter/ch00.html
Advanced Cancer, Cancer Society of New Zealand
Comment: ‘Advanced Cancer’ 2008, published by the Cancer Society of New Zealand, is available free by phoning 0800 CANCER (226237). This book contains three sections: the first and longest section is ‘Living with advanced cancer,’ then ‘Towards the end of life’ and ‘Information.’ (Also see the booklet in Resources in New Zealand)
Armed with Chocolate Frogs – Living with Advanced Breast Cancer
Kate Carey Productions, Vic, Australia 2006 AU $24.95 Read review here
Dr. Susan Love’s Breast Book
Author: Love, Susan M, Lindsey, Karen, Da Capo, Cambridge, Mass., 2005
Often regarded as the breast cancer ‘Bible’, this book informs and empowers.
Life, Happiness & Cancer: Survive with Action and Attitude!
Author: Phil Kerslake, latest print version available directly from the author from $20 inc at www.lifepaths.co.nz
Read review here
Silver Linings
Author: Margaret Foster, Random House 2009
Read review here
The Pink Party
Author: Jane Bissell, Klarer Lasserre Books 2007
Read review here
Acknowledgements
Our thanks to all those who have contributed to this page.
BCN acknowledges with thanks the following sources of information:
Breakthrough Breast Cancer UK
http://breakthrough.org.uk/breast_cancer/secondary_breast_cancer/
Cancer backup UK
www.cancerbackup.org.uk/Cancertype/Breastsecondary
Breast Cancer Network Australia
www.bcna.org.au