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.

Please contact us if you would like to offer suggestions for this page.

Quick links to articles below:

Secondary breast cancer - what is it?
Treatment for secondary breast cancer
Clinical trials
Women with secondary breast cancer share their stories
Feelings and secondary breast cancer
Resources in New Zealand
Resources on line
Books and DVDs
Acknowledgements

Special Offer

New DVD from Advanced Breast Cancer Group - Queensland

You’re Not Alone – a film about living with secondary breast cancer

BCN has 5 copies of this DVD to give away, and will send them to the first 5 NZ women with secondary breast cancer who contact us and ask for a copy.
Contact us
See Books and DVDs for further information

New Resource

The Sweet Louise interview on TV’s Open Door programme is now available on line - more details below at “Resources in New Zealand."
http://nzonscreen.com/search?search_text=sweet+louise&search=search

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 work, look after their family, go on holiday, play sport - just like other people.

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.

More about clinical trials - www.bcna.org.au/content/view/628/1247/

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. See Resources in New Zealand below, for 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 and Wellington. Watch the website, as the organisation is planning to expand its services nationally. On June 20th 2009, Sweet Louise 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 very 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. You are likely to find the society will also have information and counselling services, information about accommodation 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

National Breast and Ovarian Cancer Centre (NBOCC) in Australia:

Booklet on line - MCG Metastaticguide

This is a large booklet which has much useful information. Please note that treatments have changed since the book was written in 2001, and it is presently being revised. We recommend you seek information about therapeutic drugs from your oncologist.

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.
Breast Cancer Network Australia:
See the list of resources at www.bcna.org.au/content/view/82/92/
“If Cancer Comes Back,” www.breastcancer.org/symptoms/types/recur_metast/fear_combk.jsp

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.

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
wps2@bigpond.net.au
www.advancedbreastcancergroup.org

Feedback on this DVD would be welcomed Contact Us

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. 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, Revised edition, latest print version available directly from the author for $20 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
www.breakthrough.org.uk/about_breast_cancer/secondary_breast_cancer/

Cancer backup UK
www.cancerbackup.org.uk/Cancertype/Breastsecondary

Breast Cancer Network Australia
www.bcna.org.au