Breast Cancer Awareness Month 2018

Update on Metastatic Breast Cancer in Australia

The Forgotten Women

There is little public acknowledgement of the fact that a significant number of women will be diagnosed with metastatic breast cancer each year in Australia, either as a first diagnosis or a recurrence of breast cancer.

Our experience over the past twenty years has shown us that a diagnosis of metastatic breast cancer is akin to a traumatic event and is more devastating than a diagnosis of early breast cancer.

Living Beyond Limits

Living Beyond Limits

This Group is open to women in throughout Queensland, Australia, who have the diagnosis of advanced, also known as  metastatic or secondary, breast cancer.  It is delivered both face-to-face and via the telephone.
The Group is a supportive/expressive group, modelled on the work of Dr David Spiegel (Stanford University), author of “Living Beyond Limits: New help and hope for facing life threatening illness.”

My amazing medical team helps me fight cancer. The support group helps me live with it.

It gives women the psychosocial support we desperately need. It also takes the pressure off the hospitals. We talk about our incurable illness, treatments and how to manage the side effects. We learn how to hope, how to laugh and how to help our families cope. And we talk about death – a very difficult topic.

Stats and Facts about ABC

Breast Cancer is not a single disease, but actually a number of different diseases. This means that the treatments available vary, depending on the type of breast cancer a woman has, and outcomes vary also depending on how aggressive a particular cancer is and how well a woman responds to treatment.

When breast cancer spreads to other parts of the body, such as bones, liver, lung or brain, it is known as metastatic, advanced or secondary breast cancer. When this occurs, breast cancer is no longer curable. However, treatment is available to prolong life by slowing the progression of the disease.

Currently in Australia, it is not known exactly how many women are diagnosed with metastatic breast cancer each year, or how many women are living with metastatic breast cancer at any one time. This is because this information is not yet collected in a systematic way across Australia. This makes it difficult to determine accurate survival rates for women with metastatic breast cancer.

It is estimated that about 5-10% of women are diagnosed with metastatic breast cancer as their first diagnosis of breast cancer. A significant number of women who are diagnosed with early breast cancer will go onto develop metastatic breast cancer, but at the present time, we do not know exactly how many women are affected.

It is not possible to predict how long an individual woman will live with metastatic disease as everyone’s cancer and their response to treatment is different. Statistically, the 5-year survival rate for women with metastatic breast cancer is estimated to be40%, compared to 90%[1] for all breast cancer. Globally, the 5-year survival rate for women whose first diagnosis was metastatic breast cancer is lower at 25%[2].

[1] Cancer Australia 2015. Report to the nation – Breast Cancer 2012. [Online] Available at: https://canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/report-nation-breast-cancer-2012

[2] Global Status of Advanced/Metastatic Breast Cancer, 2005-2015 decade Report, March 2016, [Online] Available at: https://www.breastcancervision.com/sites/default/files/Decade%20Report_Full%20Report_Final-Linked.pdf

Thoughts from the group on being positive

In the first instance the phrase, “be positive,” comes with the well-intentioned meaning that this will help you to overcome your disease. For me, when someone has said “be positive” for the umpteenth time I want to scream. They say, “You’re so brave and such an inspiration”. Well, I don’t feel brave nor do I feel that I’m an inspiration.  I don’t want the pressure of being told to be positive when at times I feel anything but positive. I just do what I need to do and get by the best way I can.

What Can I Say?

Have you ever come across someone going through a time of grief or sadness, and not known what to say? Have you felt uncomfortable and found it easier to say nothing at all? Pretend it hadn’t happened, or even avoided the person?  Me too.

But now I have been on the other side of the fence, I realize that these actions are really more hurtful than helpful.

 ”But what can I say?” I hear you ask. Good question.  And I am happy to share my thoughts on the matter.

It Would be Nice

It would be nice to have a cleavage

It would be nice to be able to bend forward without worrying

Using your hand over your chest or a shirt tight around your neck

It would probably be nice to see a hairdresser and use colour

and wear a bikini in summer

 

Supportive-expressive group therapy for women with metastatic breast cancer

Our effectiveness study ‘Supportive-expressive group therapy for women with metastatic breast cancer: Improving Access for Australian women through use of teleconference’ is one of 23 international studies cited investigating the efficacy and effectiveness of groups for women with breast cancer over the last decade 2000-2011. It is one of 9 studies of SEGT and the only non RCT included from that time. 8 out of the 9 studies focused on metastatic breast cancer with only one on primary breast cancer.

 

The group offers a space to talk  without having to worry about overloading families.   Women are fearful about burdening their partners and children, they often feel burdensome enough already.  Here they can discuss ways to share with their families, and  bridge the gap  this fear can create.  This can mitigate the need to keep a brave face, which can have the unintended effect of distancing those whose support and comfort is most needed.

A Brand New Day

The dawning of a brand new day as out of bed I climb.
I’ve found since I got breast cancer, I’m pretty short of time.
I’d love to accept invites, but my friends don’t have a clue.

I’m just so bloody busy with the things I have to do.
First task I’m in the kitchen with my “new best friend” the juicer
I can feel myself get better (I can feel my bowels get looser)

Mum and women like mum with a terminal diagnosis are partly the forgotten ones because as you say not every shade of pink has a happy ending. The need for support for this group of women, emotionally and socially is paramount..”

Psychosocial impact of metastatic breast cancer

In 2016 Mary presented at the 8th International Social Work conference in Singapore on the psychosocial impact of living with secondary breast cancer (psychological morbidity, coping styles, physical symptoms and economic impact) based on data collected from our group and experience over 17 years.