In Conversation With

2 - National Helpline

3 - Early Intervention

4 - Pain Management

5 - Team Work

7 - Importance of Support

6 - Dealing with Loss

Intro - What is palliative care?

In this video, Dr Richards explains that historically, Palliative care has been associated with end of life care, but this is no longer the case. He explains that Palliative Care is an important and helpful part of an integrated health care plan from diagnosis of a metastatic or Stage 4 cancer.

Walking Beside Her. A film for partners and carers.

This DVD is a resource for partners and carers. “Walking Beside Her” is based on the experience of Peter and Fran, who had secondary breast cancer for 8 years and died in January 2010. Throughout this time Fran was a member of the Advanced Breast Cancer Group, and Peter was a member of the Partners’ Group. In this film Peter talks about their journey together from diagnosis to the final days, in the hope that this will be of help to other partners and carers of women with secondary breast cancer.

ASK YOUR RADIATION ONCOLOGIST

You're not Alone

The use of medical marijuana in cancer treatment or managing side effects.

In this video Dr Andelkovic noted the controversies surrounding the use of medical marijuana. There is no good evidence of medical marijuana having a positive role in the treatment of cancer. However, it can be effective in managing nausea and increasing appetite, and sometimes pain, although this is very subjective.

Why does breast cancer recur?

In this video Dr Andelkovic responds to a question about why breast cancer recurs, sometimes many years after the original diagnosis. He acknowledged this as one of the million-dollar questions researchers continue to grapple with.

What is triple negative breast cancer?

In this segment from the Q&A, Dr Andelkovic explains what ‘triple negative breast cancer’ is and how our understanding of breast cancer has changed over the past 20-30 years from seeing it as a single disease to now being divided into three groups – hormone positive, HER2 and triple negative, each requiring different types of treatment.

How common is it for breast cancer to mutate?

In the Q&A part of the discussion with Dr Andelkovic, one of the ABCG group members asked how common it is for breast cancer to mutate. In particular, hormone-receptor positive breast cancer mutating into a triple negative cancer. In his response, among other points, he commented on the importance of re-biopsy as it is not uncommon for cancers to mutate over time.

Will we ever find a cure for metastatic breast cancer?

In this video Dr Andelkovic discussed whether it is possible to cure metastatic breast cancer. He acknowledged that while the goal of all cancer researchers is to find a cure, given the nature of advanced disease is that it becomes resistant to treatment over time, he is cautious to use the term ‘cure’ and instead thinks in terms of ‘sustained remission’.

Travelling while on cancer treatment

In this clip Dr Andelkovic discusses the logistics of travelling within Australia whilst on cancer treatment, particularly if having infusions. He explained the difficulties of organising treatment, particularly for short terms stays, due to strict government guidelines and the requirement for pharmacies and hospitals to be registered to administer specific treatment.

The ‘compassionate access program’, also known as ‘patient familiarisation programs’

In this video Dr Andelkovic discusses the potential for patients to access drugs used in clinical trials through ‘compassionate access programs’. This is particularly where a drug has shown efficacy in published trials but may not yet be on the PBS. Access to the drug is generally free and the program is initiated in collaboration with the patient’s oncologist.

New developments in the treatment of HER2 positive breast cancer

In this video Dr Andelkovic discusses the use of new drugs for the treatment of HER2 positive breast cancer, with early research showing positive results in improving the prognosis for patients who are HER2 positive. Kadcyla, a ‘targeted smart drug’ designed to selectively attach to breast cancer cells whilst avoiding healthy cells in the body, is already in use in Australia. Other new drugs are being used in clinical trials, including one at the Princess Alexandra Hospital in Brisbane.

New developments in the treatment of triple negative breast cancer

In this video Dr Andelkovic explains how the evolution of technology is impacting the treatment of triple negative breast cancer, with the use of a combination of chemotherapy and an antibody to target cancer cells more effectively and with less toxicity. He also discusses the use of immunotherapy in the treatment of patients with triple negative breast cancer and efforts to identify those patients who are more likely to benefit from immunotherapy. We would recommend watching this video in conjunction with the video entitled ‘what is triple negative breast cancer?’ which is also part of the series of videos from Dr Andelkovic.

The launch of a national clinical trial app – ClinTrial Refer App

In this video, Mary O’Brien (ABCG Group Therapist) asks Dr Andelkovic about how women find out about or get onto a clinical trial. He directs the group to an app called ‘ClinTrial Refer’ which is a database of clinical trials in Australia. The app can be downloaded from the app store. The website for more information is https://clintrialrefer.org.au/ He encourages patients to talk to their oncologists about trials that may be available to them.

New Developments in the Treatment of Hormone Positive Breast Cancer

In this video, Dr Andelkovic discusses the use of a new oral treatment for hormone positive breast cancer called CDK4/6 inhibitors. These new drugs have been shown to be effective in delaying the resistance of breast cancers to endocrine treatments. They are relatively non-toxic and improve the effectiveness of hormone treatment when given concurrently. For more on ‘resistance to breast cancer treatment’ we would recommend watching ‘will we ever find a cure?’, part of the series of videos from Dr Andelkovic, as it explains the impact of drug resistance in metastatic breast cancer.

Chemotherapy vs hormone therapy – changes in the approach to first line treatment

In this clip Dr Andelkovic explains that there has been a change in the approach to treating metastatic breast cancer in recent years. Hormone therapy has become the preferred first line of treatment instead of chemotherapy, where appropriate, as it gives patients better quality of life. Chemotherapy as a first option is now reserved for more aggressive forms of the disease.

Metastatic Breast Cancer Awareness Day - October 13th

October is breast cancer awareness month and to commemorate October 13th, Metastatic Breast Cancer Awareness Day, we have put together a compilation video which articulates a simple message – to seek out the stories of women living post pink. Help reduce their sense of isolation by increasing your understanding and awareness of their experience of living with a terminal illness. https://www.advancedbreastcancergroup.org.au/

What Can I Say? LEANNE

Leanne is incredibly open and engaged in sharing her 'detour' after her metastatic diagnosis and in this video took on four questions with honesty and humour. Sharing a message not only for women living with a metastatic disease but something everyone can learn from and embrace.

Q&A 1 - Articulating your needs

Question: in this first video, Tom responds to a question about how to ensure your wants, needs and concerns aren’t diminished when talking to health professionals.

Q&A 2 - Relationship building with health practitioners

In this second video the question from the group related to concerns about being treated as a number or a diagnosis rather than an individual. In response Tom highlighted the importance of relationship building with health practitioners in order to increase levels of trust, knowledge and ultimately efficacy in treatments.

Q&A 3 - Sharing your feedback

It is important to talk about how you are feeling with respect to the way health practitioners are engaging with you – whether that is good or not so good. In this 3rd video, Tom gives his views about the benefit that should come with open conversations.

Q&A 4 - Communication is key

Relationships in any part of life are a two-way street, and that is the same as those developed between a patient and their healthcare team. Here Tom emphasises the need for openness from the patient, and in response, action from the health practitioner. Ultimately in this 4 video Q&A series, communication is key – each video giving a guide to different aspects of communication with health practitioners, and all with the purpose of ensuring the patient is at the centre of every decision and the treatment is as personal and effective as possible.

The relationship between stress and cancer. Professor Jane Turner.

In this video from Professor Jane Turner, she discusses the often-cited relationship between stress and cancer. She discusses research outcomes that debunk stress as a primary factor contributing to cancer. In the video Professor Turner also shares her frustration at the avoidance by society and the media in dealing with what is a reality for many women receiving a terminal diagnosis.

Taking control. Professor Jane Turner.

‘’You should drink celery juice and you will feel amazing'”- unsolicited advice about vitamins and herbs will not be something new to most women living with metastatic breast cancer. In this video Professor Turner talks about how to avoid being a passive recipient of this 'advice'. She also shares her thoughts on the 'About Herbs' app from Memorial Sloane Kettering in New York.

Relationships with friends. Professor Jane Turner.

In this video, Professor Turner shares her insights into how and why relationships often change after someone is diagnosed with a metastatic disease. In it, she provides tools to understand and navigate the changing friendship.

The need for doctors to communicate. Professor Jane Turner.

Professor Turner discusses the variability amongst doctors and others to talk explicitly about a women’s prognosis. In the video she explains why she thinks this is so, particularly in the case of metastatic cancers.

Children and Resilience. Professor Jane Turner.

Worry about the effect of the diagnosis on children and grandchildren is a very real and prominent issue for women diagnosed with metastatic breast cancer. In this video Professor Turner explains the potential effect on children by trying to protect them from what is a very real experience for their parent or grandparent. In it she discusses resilience associated with trauma.

Depleted energy and the box of tissues analogy. Professor Jane Turner.

In this video, Professor Turner uses an analogy of a box of tissues to explain how quickly energy is depleted when someone tries to do everything themselves rather than asking a friend or family member for support.

Working toward a healthy mind. Professor Jane Turner.

Professor Turner presents three forms of mindfulness therapy which require a conscious engagement and dismissal of negative or worrying thoughts. Acceptance and Commitment Therapy, Detached Mindfulness and Threat Monitoring are all tools to support women living with metastatic breast cancer, their families and society in general.

Don't be afraid to ask for help. Professor Jane Turner.

This video sees Professor Turner articulating the complex relationship between giving and receiving help. Particularly as it relates to women generally being reluctant to ask for help in a direct and forthright way.

The 'capable woman syndrome'. Professor Jane Turner.

An important point in this video is that support, whether medical, physical or emotional, is personal. Professor Turner shares her thoughts on professional support and in particular on how vital it is for women to ensure they are getting the support they want and need.

Seeking personalised support. Professor Jane Turner.

An important point in this video is that support, whether medical, physical or emotional, is personal. Professor Turner shares her thoughts on professional support and in particular on how vital it is for women to ensure they are getting the support they want and need.

Coping with uncertainty. Professor Jane Turner.

For women living with metastatic breast cancer 'what if' discussions can be confronting particularly relating to questions of losing independence, sickness or end of life. In this video Professor Turner encourages those conversations and explains how to cope with the uncertainty that comes with a metastatic diagnosis.

Moving out of the shadowlands. Professor Jane Turner.

In this first video, Professor Turner acknowledges the isolation that often comes with a metastatic diagnosis. She talks about this as the feeling of living in the shadowlands. Her series is about helping women and their families to feel more in control of their life and needs.

1 - Effective Communication

Cancer brings with it a myriad of complex problems, not least of all experiences the person living with cancer has with others in their lives. In this 1st of 4 videos Tom talks about people living with cancer having control over how they share their experience with other people in their lives.

2 - Reading Between the Lines

In any social conversation, it is often a matter of reading between the lines to truly understand what the other person might be asking – what do they really want to know. This is particularly true when it comes to conversations about cancer. In this video, Tom aims to take the pressure off what might be a confronting or difficult conversation about cancer. He suggests ways to hear beyond the actual words to understand the meaning behind them. Do they really want to know about your cancer treatment, or do they simply want to know that you are alright? It is about understanding the questioners’ needs whilst protecting and standing up for your own. This is the 2nd in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms.

3 - What does the questioner really want to know

Extending on from the previous video ‘Reading between the lines’ Tom further explores the concept of hearing the meaning that sits behind the words used in a question. Understanding your audience and changing tack depending on who you are talking to is a big part of this. Tom also touches on the intimacy of conversations with tears and talks about the value of those connections. This is the 3rd in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms.

4 - The benefit of sharing experiences and asking for help

So far in this series, we have talked about talking with people living outside the direct experience of living with a metastatic diagnosis. In this video, Tom discusses the benefit of talking to others living a similar experience. This is true of our understanding over the past 21 years of the Advanced Breast Cancer Group – that with familiarity comes safety and a level of solidarity and hope. The important take away message from this final video is to know there is always help if you need it – be open to ask for and receive help – it can come from a range of places and can be a powerful source of emotional support. This is the 4th in a series of 4 videos sharing insights and guidance about how to talk about cancer on your own terms. The series can be watched by visiting https://www.advancedbreastcancergroup.org.au/

What Can I Say? LEONIE

The purpose of 'what can I say' is not to put barriers up on questions or comments, but to break them down. The caution surrounding discussions about terminal disease generally leads to a total avoidance of it. Which, as Leonie points out in this video is the worst thing someone could do. Leonie shares not only her experience talking about her diagnosis, but also the very real and personal reaction she had when she found out about it, and the strength and solidarity she feels in being part of the ABCG.

What Can I Say? ALISON

Alison is a close friend of one of our members, Gerry, and here she shares how she answers questions about Gerry whilst still respecting the privacy of her friend. And how much they love coffee!

What Can I Say? GERRY

In this video, Gerry answers a question about whether she has feelings of guilt when talking to loved ones about how she might be feeling. She also talks about how to respond to friends who have difficulty knowing what to say.

What Can I Say? LYNETTE

We have heard so many times how much the women in the group support each other in learning to live with a metastatic disease. Changing that mindset of living with rather than dying from, is something Lynette expresses in answering a question about planning for the future. Lynette also responds to a rather blunt comment based on her own personal experience.

What Can I Say? DI

In this video, Di shares how open she is to talk about her diagnosis and what she is going through, when someone asks. Di also tackles one of the more difficult questions asked; "what are your thoughts about death".