In Conversation With

8 - Biggest lesson

In this video, another question from the floor asks about the most significant lesson the two of them have learned. Mary answers by telling the story of a woman from early in the group’s history who said “the doctors tell you you’re going to die, and women show you how to live”. Pia then suggests a great tip that she has taken to heart: eat a lot of chocolate.

7 - What would you have done differently

In this video, Catherine takes another question from the floor asking that in hindsight, is there anything you would have done differently? Mary begins by saying that there really isn’t too much she would change. She explains by describing the early days of the group and how it has evolved organically based on a series of encounters and events.

6 - The future of the service

In this video, Catherine asks what retiring Directors Mary and Pia would love to see in the group’s future. Pia shares her thoughts by stating that the ABCG is a group for courageous individuals eager to learn how other women cope, and that she’d love for that to continue. Additionally, she’d love to see the model receive federal support and made available in every state, as well as being adapted to help those facing other types of cancer. Mary adds that she wishes to see more similar groups across Queensland to reach more individuals living with metastatic breast cancer.

5 - How will you feel after stepping down

In this video, Catherine takes another question from the floor with one of the women from the group asking how both Mary and Pia will feel after stepping away. Mary admits that leaving will be tough for her, and suggests it is partly why she has chosen to stay on to help transition the group. She also reflects on the bright side and discusses her plans for how she will spend her time once she retires.

4 - Faced with the loss of funding

In this video, Catherine opens the floor to the group and a question is asked about a period in the group’s history when they were facing funding issues. Mary explains how their existing contract with the government was coming to a close and Pia shares details about the campaign and petition they organised, which ultimately led to the continuation of their funding.

3 - How has the group changed you?

In this video, Catherine asks how being part of the group for an impressive 25 years has influenced their lives. Pia responds by explaining the single biggest learning she has had is to be grateful for the life you have and to live for the moment. She goes on to explain how privileged she feels to have worked with all the women that have been a part of the group. Mary then adds that the insights she has gained have been incredibly valuable, both professionally and personally.

2 - Why two therapists?

In this video, Catherine explores the ABCG’s dual model, which involves having two therapists facilitating the group. Pia discusses how supporting one another enhances their ability to contribute to the group. Following that, Mary highlights the practical advantages of having two people involved.

1 - How it all started

During our March 2024 workshop, Dr Catherine See, a member of our Board, explored the group’s 25-year journey via a series of questions to retiring Co-Directors Mary O’Brien and Pia Hirsch. The session also featured the video “From the Archive,” which showcased some key milestones and some more lighthearted moments. It can be viewed here. In this video, Catherine dives into the original vision for the group and asks how the ABCG came to be set up. Mary shares the story behind the group’s founding and highlights the research that demonstrated the psychosocial benefits for women living with metastatic breast cancer.

MARY

Following a group discussion, Co-Director Mary O’Brien provides insights into the interview process. She emphasises that the process aims to protect the current members. She also highlights the significance of preparing new members to handle different situations, like the death of a group member, and understanding their needs to ensure a good fit with the group.

PIA

Co-Director Pia Hirsch addresses a point raised about family members feeling unsure about how to help. She emphasises that just being present and not shying away from the situation can be extremely helpful and perhaps the most valuable thing they can offer.

JO

Sharing her story, group member Jo talks about her experience of joining, highlighting the early days of feeling supported and receiving help with some challenges she was facing with her Oncologist. She reflects on the importance of the group in her life and her hopeful outlook for it. Jo concludes by thanking the group for their support and acknowledging that she had no support system prior to joining.

INTRO - PIA

Our March 2024 workshop starts with Pia Hirsch introducing the theme of Beginnings and Endings. She talks about the uncertainty regarding the group’s future with her and fellow Director Mary O’Brien retiring soon. She then invites the group and their partners to contribute their thoughts on the group and what they would like to see in its future.

TIANA

Group member Tiana is thankful and expresses her love for the group. She acknowledges the uncertainty of the future but emphasises that it doesn’t necessarily mean it will be negative. Mary then reassures the women that she, Pia, and the team are dedicated to making the transition as seamless as possible, with the aim of the ABCG continuing to provide the same excellent service they have for the last 25 years.

KARYN

Karyn, one of our group members, reflects on her need for support following her diagnosis. She expresses her gratitude for the group and highlights the levels of care, support, and wisdom she experienced from the very start. She also mentions that the legacy created by Mary and Pia is deeply ingrained in the group and will continue to be a part of it.

JANETTE

Janette, the sister of a woman in the group, talks about the strength the group has been able to provide her. She expresses her gratitude for the help they provide her sister, acknowledging that they can offer assistance in ways she cannot.

EDITH

Group member Edith shares insights on the group dynamics and highlights the various ways it has assisted women dealing with a range of issues.

DEBBIE

Debbie, a member of the group, looks back on the time she found the ABCG and how much she was struggling at that point. She then discusses the unique bond and language shared by the women in the group before reflecting on how the interview process aided her integration. Debbie expresses her gratitude to Mary and Pia for welcoming her and for providing a safe space for discussing issues that others simply don’t understand.

DAVID

One of our group members’ partners, David, shares a family perspective on the group. He talks about how it has positively impacted his daughters and what it means to his partner, particularly the strength it provides her and the uplifting moments it brings. He expresses his appreciation for the group, thanking the team for making it all possible and expressing hope for its future.

CHRISTINA

Group member Christina shares her concerns about the future of the group, noting that it won’t be the same without Mary and Pia. She thanks them for their contributions and expresses her willingness to see how things unfold. Pia responds by explaining that current members’ continued involvement will help maintain certain aspects of the group.

ANNIE

One of the group members, Annie, describes the group dynamics and how she finds them helpful, in particular how the facilitators enable the group to steer the conversation while providing gentle guidance to ensure everyone gains something from the experience.

Q9 - Services for partners

Professor Phillip Good touches upon the available support for carers, both during the illness of the person they care for and after their death. He discusses the emotional difficulties that carers, particularly men, have to deal with and stresses the significance of finding a service that is well-suited to the individual’s needs. Dr. Rebecca Moor contributes by sharing certain services that have proven beneficial to caregivers of her patients.

Q1 - What is palliative care and how do you get referred?

Professor Phillip Good provides a clear explanation of palliative care and addresses common misconceptions about the service. He also discusses the process of referrals, emphasising the importance of the relationship between the patient, the caregiver, and the referrer.

Q2 - About carers

Professor Phillip Good shares some profound insights into the lives of carers, exploring the challenges they encounter and their own emotional experiences in this role. He reveals the prevalent sense of guilt experienced by many carers, while also explaining the underlying reasons behind this common and natural feeling.

Q3 - How do you get referred to palliative care?

It is stressed by Professor Phillip Good that a doctor, be it a specialist or a general practitioner, should be the one to refer a patient to palliative care services. He explores the effects of early versus late referrals on a patient’s quality of life and underlines the holistic support that palliative care can offer.

Q4 - Supportive care

In relation to the term ‘palliative care’, Professor Phillip Good highlights the fact that although alternative names are used to refer to this service, he tries to clarify what is involved when asked, regardless of the terminology used.

Q5 - When is the right time to reach out to palliative care?

Professor Phillip Good explores the factors that should be considered when thinking about contacting palliative care and shares his views and some benefits of contacting the service earlier rather than later.

Q7 - What are the services available to patients living in remote areas?

Professor Phillip Good provides an overview of the telehealth palliative care service offered in rural Queensland. He details the operational process of the service and outlines the referral procedure for patients.

Q6 - What are your thoughts on CBD oil and alternative medication?

Professor Phillip Good starts by clarifying that CDB oil that is prescribed is not an ‘alternative’ medication. He notes that every prescription will have identical quantities of CBD in it, whereas this cannot be guaranteed with non-prescribed forms of cannabis. He also touches on the mistaken idea that cannabis cures cancer - there is no evidence of this - and he would be concerned if people chose untested medications as an ‘alternative’ to proven treatments.

Q8 - End of life care at home

In his findings, Professor Phillip Good discusses the statistics surrounding patients who die at home. He delves into the factors that influence where patients die and advises early preparation for those who have a preference to die in the comfort of their home.

Q10 - How does palliative care at home works?

Professor Phillip Good explains what a community palliative care service is and how it works. He explains the specialised skills that are available, such as counsellors and physiotherapists, and touches on equipment requirements. He then elaborates on the potential difficulties that patients and caregivers may encounter when administering care from home.

Q18 - Are some types of breast cancer more likely to metastasise to the brain?

Dr Rebecca Moor refers to ductal and lobular forms of breast cancer and the differences in their potential to metastasise to the brain. She talks about the advice she offers her patients on recognising symptoms that are specific to their particular type of cancer.

Q17 - Different types of scans

Dr Rebecca Moor provides a detailed explanation of the various scans utilised by oncologists during cancer treatment. She assesses the advantages and disadvantages of each type of scan, as well as their specific applications for different types of cancers.

Q16 - More about clinical trials

Dr Rebecca Moor explains how drug trials are conducted, what’s involved, and the factors that patients need to consider when thinking about joining a clinical trial.

Q15 - Clinical trials

Dr Rebecca Moor explains how drug trials are conducted, specifically around the use of placebos and the consequent impact on participating patients. She highlights the infrequency of trials where patients are exclusively administered placebos, attributing this to the many treatment options available.

Q14 - Bones

Dr Rebecca Moor provides detailed insights into the drug Denosumab, highlighting its role in complementing breast cancer treatments by alleviating bone pain and reducing the risk of fractures.

Q13 - Are women living longer with advanced breast cancer?

Dr Rebecca Moor outlines the therapies that have extended the lives of women with metastatic hormone positive cancer. She says that, in certain instances, the duration patients can remain on a specific medication has more than doubled. She then goes on to discuss advancements in new therapies for different cancer types.

Q12 - Finding solutions

Dr Rebecca Moor talks about what action can be taken if a patient feels like they are not being listened to by their oncologist. She suggests reasons as to why this may occur and offers advice for patients to attain a positive outcome.

Q11 - Liaising with your oncologist

Dr Rebecca Moor discusses the dynamics between a patient and their oncologist. She emphasises the evolving nature of this relationship and stresses the vital role of maintaining an open and ongoing dialogue between them.

Q10 - Pain relief and cannabis

Dr Rebecca Moor addresses the use of cannabis and its potential benefits for patients. She emphasises that the effectiveness of treatment varies among individuals, and her experience suggests that while some people have found it helpful for various reasons, others have not. She suggests that patients looking to try it inform their oncologist.

Q9 - Treatment options and hair loss

Dr Rebecca Moor elaborates on the differences in chemotherapy treatments for metastatic cancer, emphasising the need to take into account factors like quality of life when formulating a treatment plan. She also outlines specific chemotherapy options and the associated side effects.

Q8 - Can you go back on hormone treatment if other treatments stop working?

Dr Rebecca Moor explains that hormone positive breast cancers can develop resistance to hormone blocking therapies. And that unfortunately, once this resistance is established, the likelihood of hormone therapies regaining their effectiveness is minimal.

Q7 - Is there a link between sugar and cancer?

Dr Rebecca Moor addresses what she thinks may be the source of the perceived association between sugar and cancer but says that there is insufficient evidence to support the exclusion of sugar from a patient’s diet.

Q6 - Should we still have mammograms?

Dr Rebecca Moor explains that although mammograms are typically not necessary for individuals with metastatic breast cancer, there are certain circumstances in which an oncologist may recommend it for their patient.

Q5 - What are the problems associated with low calcium levels?

Dr Rebecca Moor discusses low calcium levels further, highlighting its impact on the digestive system but also the cardiovascular and renal systems. She elaborates on why oncologists conduct routine blood tests to monitor levels and ensure they remain within a healthy range.

Q4 - Is there a connection between breast cancer and dairy or soy products?

Dr Rebecca Moor addresses the misconception regarding the potential risk of dairy or soy products in relation to breast cancer. She clarifies the origins of such information and emphasises the lack of substantial research supporting any connection. Additionally, she highlights valid dietary concerns such as lactose intolerance that patients may take into consideration when deciding whether to include these products in their diet.

Q3 - What are the benefits of calcium supplements?

Dr Rebecca Moor addresses the consequences of low calcium levels and emphasises the role of diet in influencing these levels. She also highlights the significance of calcium supplements in ensuring the proper balance, particularly for individuals taking medications for bone health.

Q2 - Should we have bones density tests?

In a discussion on bone density, Dr. Rebecca Moor sheds light on the significance of Denosumab and Xgeva in alleviating bone pain and minimising fracture risks. She explains the role these medications, along with vitamins D and C, have in maintaining bone health. Additionally, she explains the guidelines regarding the requirement for bone density tests.

Q1 - Does Nexium affect the efficacy of Xgeva?

Dr Rebecca Moor discusses the impact of Nexium on calcium absorption and offers guidance on its proper intake alongside other medications. She also notes the effects of reflux on quality of life and the advice she gives her patients regarding PPI’s (Proton-pump inhibitors ie medications to reduce stomach acid).

Q10 - Palliative Care

Ms Head talks about the best time for a patient to consider palliative care and discusses its many benefits.

Q9 - Discussing Scan Results

Ms Crowe explains why it is preferable to discuss scan results with an oncologist before talking to a breast care nurse.

In conversation with the ABCG therapists

For 21 years, the Advanced Breast Cancer Group has provided support throughout Queensland to women living with metastatic breast cancer and their families. Mary O'Brien and Pia Hirsch are group therapists, and, in this video, they talk about the purpose, impact and relationships formed in the group, the process of that first meeting with a new member and their family and the effect on the group when a woman dies.

Support the Advanced Breast Cancer Group

When the Newman government cut our funding in 2012, we decided to fight the decision. This video was made as part of that campaign. Since then, the Palaszczuk government has reinstated our funding, nonetheless the video speaks to what the group offers, and is a reminder of what was under threat.