Upfront About Breast Cancer

Episode 9: What You Don’t Know Until You Do, with Dr Charlotte Tottman: Exercise is Annoying (‘cos it works): The Psychological and Physical Benefits

We recommend that listeners exercise self-care when listening to the Upfront About Breast Cancer What You Don’t Know Until You Do with Dr Charlotte Tottman podcast, as some may find the content upsetting. Each episode is raw and real and covers a range of topics, some of which may be triggering for people at various stages of their journey. The intention is to have meaningful conversations, present relevant information and provide practical strategies that may help someone or someone you know on their cancer journey. BCNA’s helpline provides a free confidential telephone and email service for people diagnosed with breast cancer, their family and friends. Our experienced team can help with your questions and concerns and direct you to relevant resources and services. Call 1800 500 258 or email [email protected].

In this episode of What You Don’t Know Until You Do, with Dr Charlotte Tottman, we hear about the major benefits, both psychologically and physically, of exercise during breast cancer treatment, the different exercise types and formats that can be beneficial to treatment, as well as hearing Charlotte’s rehab story and how she discovered what worked for her. 

To help us continue to develop our podcasts, we ask for your feedback via our survey.

Resources:

- Sign up to My Journey and access a range of resources on

• Exercise after breast surgery
• Exercise: why, what and how?
• Physical activity, eating healthy and breast cancer

- Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia.

Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by JT Reid.

Produced by Dr Charlotte Tottman and BCNA 

Engineered and edited by Jane Nield at SEN Studios

Visit our website at www.bcna.org.au/, email us at [email protected], or call our Helpline on 1800 500 258 if any of the content in this podcast has raised any concerns or questions.

Episode 10: What You Don’t Know Until You Do, with Dr Charlotte Tottman: The Iron Fist: Fear of Cancer Recurrence

We recommend that listeners exercise self-care when listening to the Upfront About Breast Cancer What You Don’t Know Until You Do with Dr Charlotte Tottman podcast, as some may find the content upsetting. Each episode is raw and real and covers a range of topics, some of which may be triggering for people at various stages of their journey. The intention is to have meaningful conversations, present relevant information and provide practical strategies that may help someone or someone you know on their cancer journey. BCNA’s helpline provides a free confidential telephone and email service for people diagnosed with breast cancer, their family and friends. Our experienced team can help with your questions and concerns and direct you to relevant resources and services. Call 1800 500 258 or email [email protected].

In the final episode of What You Don't Know Until You Do, with Dr Charlotte Tottman, we hear about what fear of cancer recurrence is and why it’s normal to experience anxiety about the idea of the cancer coming back. We explore the common triggers, including medical reviews, diagnosis of a family member or friend, and physical symptoms, as well as discussing the common responses in fear of recurrence, including avoidance and reassurance-seeking. Charlotte shares her personal experience of fear of recurrence, the strategies she uses to cope, and why and how she uses her fear as a motivator. 

To help us continue to develop our podcasts, we ask for your feedback via our survey.

Resources:

- Sign up to My Journey and access a range of resources on what makes breast cancer return or spread.

- Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia.

Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by JT Reid.

Produced by Dr Charlotte Tottman and BCNA 

Engineered and edited by Jane Nield at SEN Studios

Visit our website at www.bcna.org.au/, email us at [email protected], or call our Helpline on 1800 500 258 if any of the content in this podcast has raised any concerns or questions.

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about the impact of breast cancer on sexual health. Sex and intimacy are very personal but important parts of life. Breast cancer and treatment can affect sexual wellbeing and intimacy for each person and their partner in different ways, including experiencing loss of self-esteem due to physical changes to your body.

Joining us for this episode of Upfront is Tess Devèze (they/them). Tess is a clinical occupational therapist (OT) and certified somatic sexologist who works with people living with cancer, chronic illness, and disability to live more pleasurable and sexually healthy lives. Tess was diagnosed with breast cancer three years ago and has personally experienced the severe impacts treatments have on sexuality. Being a member of the LGBTIQ+ community, a sexuality clinician and a cancer survivor has given them the determination to offer support and help to as many as they can around those more ‘intimate’ challenges we face.

We’ll hear from Tess on their lived and professional experience about the impact of breast cancer treatment on libido, arousal, desire, vaginal changes and sexual intercourse. We also learn about effective ways to restore and enhance intimacy and what options are available to help you manage the impact of treatment on your sexual wellbeing.

RESOURCES:

•Information & downloadable resources: Breast Cancer Network Australia ‘My Journey’ bcna.org.au

•Intimacy & cancer resources: ‘ConnectAble Therapies’ connectabletherapies.com

•Cancer aware counsellors: ‘Cancer Council' ph: 13 11 20

•LGBTIQ+ counsellors: ‘ACON Health – Pride Counselling’ acon.org.au

•YouTube channel for video tutorials on sex & cancer: ‘The intimacy OT; On sex & intimacy after cancer’

•All gender inclusive sexuality & cancer Facebook support group: ‘The intimacy OT; On sex & intimacy after cancer’

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about managing fatigue related to breast cancer treatments. Fatigue is a common side effect of treatments related to breast cancer, particular chemotherapy and radiotherapy. Fatigue doesn’t always go away with rest and sleep and may last for months after treatment is finished, and for people with metastatic breast cancer, lifelong treatment means fatigue associated with treatments can be ongoing.

Joining us for this episode of Upfront is Kathy Wells, Kathryn Wallace and Rina Portet. Kathy is a long-time BCNA staff member who was diagnosed with breast cancer at the end of January 2021. At the time of recording, Kathy has had five months of chemotherapy treatment followed by breast conserving surgery, with radiotherapy still to come. Rina was diagnosed with metastatic breast cancer in 2014 when she was pregnant with her 3rd child, who is now 6.5 years old. Rina had treatment while pregnant and has continued treatment since.

Kathryn Wallace is an experienced Specialist Breast Care Nurse having spent over 25 years in a variety of settings supporting people affected by breast cancer diagnosis. Her roles have been diverse and comprehensive, providing support and education in acute clinical settings, private practice, non-for-profit organisations and working closely with GPs to improve links between primary health care providers and clinical specialists.

We hear about Kathy’s and Rina’s personal experience with fatigue associated with breast cancer treatment, and helpful advice and strategies they’ve both used on their journey to help manage their fatigue from their differing experiences. We also learn about the key causes of fatigue, the differences in breast cancer treatments can contribute to fatigue and what you can speak about with your treatment team to identify the right treatment to help you manage your own experience.

RESOURCES:

•Sign up to My Journey and access a range of resources on fatigue

•Visit our Online Network to connect with people going through a similar experience.

•Find an accredited exercise physiologist- ESSA, www.essa.org.au/

•Australian Cancer Survivorship Centre (ACSC) resource on “Follow-up of survivors with cancer-related fatigue”

•“Breast Cancer and exercise” fact sheet – Exercise is Medicine Australia 2014

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about hair loss and breast cancer. Perhaps the most noticeable side effect of some chemotherapy treatments is hair loss. A bald head, especially for women is sometimes the first physical sign that screams ‘cancer patient’. It’s a lot to deal with on top of a diagnosis and whilst it might pale in comparison to a life-threatening illness it has a big impact emotionally. For many women, their hair can be very much a part of their femininity and identity. In recent years Cooling Caps have become an option for some that want to try preserve some of their hair but it takes commitment and let’s be honest – it’s painful.

Joining us for this episode of Upfront are two women who are going to give us some insight into their experience – Juliet Wilson, who did not have the cooling cap and Caroline Sladen, who did.

RESOURCES:

• Sign up to My Journey and access a range of resources on hair loss.
• Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about peripheral neuropathy. The term refers to a loss of sensation, tingling and pain in the hands and feet, which is a side effect of some chemotherapies. Peripheral neuropathy can significantly affect quality of life with pain, loss of balance and impaired sleep.

Joining us for this episode of Upfront is Sue Dowe and Dr Kate Webber. Sue underwent extensive treatment for breast cancer in 2017 and, during the second course of chemotherapy, developed peripheral neuropathy, particularly in her feet and to a lesser extent, in her hands. While the symptoms in her hands disappeared within a few months, the symptoms in her feet have not entirely resolved. Dr Kate Webber is a medical oncologist at Monash Health and adjunct senior lecturer at Monash University. She has a keen interest in breast oncology, cancer survivorship and patient reported outcomes research.

We hear about Sue’s personal experience of peripheral neuropathy, and strategies she’s used throughout her journey to manage her symptoms. We also learn more about the specifics of the condition itself, including how treatment can be adjusted to minimise long-term impacts, medication options and the role exercise can play in alleviating symptoms.

Due to current circumstances, this podcast was recorded remotely. Listeners may notice a slight difference in audio quality when compared with previous episodes.

RESOURCES:

• Sign up to My Journey and access a range of resources on peripheral neuropathy and pain management.
• Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about looking back on a breast cancer experience and talk about some of the things you might wish you had of known. Often described as an emotional rollercoaster, no two breast cancer experiences are the same. A common theme, however, is people reporting the immense adjustment required to adapt to a ‘new normal’ once hospital-based treatment has ended. For some there is anxiety, a sense abandonment and difficulty navigating changed relationships, a lack of self-confidence and feelings of grief.

In this episode, we’re joined by Kath Elliott and Janine Keyhoe. Kath was diagnosed with locally advanced triple positive breast cancer at the age of 46, while Janine, also in her 40s received the diagnosis of triple negative breast cancer at the height of the COVID-19 pandemic. Firm friends, Kath and Janine are both passionate about developing more opportunities for those who have finished their active treatment to connect and share their experiences.

We hear the lessons that Kath and Janine have learnt from their respective experiences, and their reflections on topics ranging from the conversations they had with their families, contrasts in the private and public health systems and the make-up of their support networks to the impact of their breast cancer on relationships and the integration of gratitude and self-care into their daily lives.

RESOURCES:

• Sign up to My Journey and access a range of resources on treatment and side effects as well as navigating the emotional impact of a breast cancer diagnosis.
• Visit our Online Network to connect with people going through a similar experience.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about hereditary breast cancer. It’s widely known that inherited genetic mutations, or faults in genes associated with breast cancer such as BRCA 1 and BRCA 2 genes, can occur in some families and increase the risk of breast cancer.

But what does the term ‘family history’ of breast cancer mean? What does a positive genetic test mean for someone’s breast cancer risk? What preventative measures are available to someone with a genetic mutation? What about the emotional impact the presence of genetic variants has on individuals and families?

To unpack all these questions and much more, we’re joined by BCNA member Sam DiCicco. Sam has an extensive family history of breast cancer, and tested positive for a BRCA1 gene mutation in 2000 before a triple negative breast cancer diagnosis in 2007. Sam’s mother and sister are also carriers of the gene along with her eldest daughter, with her youngest daughter about to be tested for the mutation.

We’re also joined on the podcast by Associate Professor Dr Yoland Antill, a medical oncologist whose work and research interests lie in the areas of hereditary cancer risk and breast and gynaecological cancers. She has more than 20 years' experience in both medical oncology and in the diagnosis and management of hereditary cancer syndromes.

RESOURCES:

• Sign up for the My Journey online tool view articles on breast cancer risk in families.
• Visit our Online Network where you can connect with other people who are going through, or have been through, breast cancer.
• Family cancer clinics provide services for people with a family history of cancer. The service is offered to family members whether or not they have been diagnosed with cancer. Find your local service here.
• Check out iPrevent, a breast cancer risk assessment and risk management decision support tool developed by researchers at Peter Maccallum Cancer Centre.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

We know that cancer is now the biggest killer for Aboriginal and Torres Strait Islanders and that indigenous women are less likely to survive a breast cancer diagnosis than non-indigenous women.

In this episode, we’re joined by Professor Jacinta Elston, an Aboriginal woman from Townsville who has been through breast cancer herself. Jacinta draws on her own lived experience, as well as her insights from her distinguished career in Aboriginal and Torres Strait Islander health, as we unpack the additional challenges that First People face in navigating the healthcare system with a breast cancer diagnosis.

We discuss a range of topics, from the many and varied systemic barriers that First Peoples face, to the importance of identifying as an Aboriginal and Torres Strait Islander in ensuring access to culturally sensitive care as well as questions that First People might ask throughout a breast cancer journey, and more.

RESOURCES:

• Sign up for the My Journey online tool to access a range of resources specifically for First Peoples.
• Visit our Online Network where you will find a dedicated discussion group for First Peoples who have been through, or are going through, breast cancer.
• Check out Cancer Australia’s ‘Cancer – what to expect: Information for Aboriginal and Torres Strait Islander people who have cancer’ factsheet.
• Visit Cancer Australia’s website with information and a range of resources for First Peoples diagnosed with breast cancer.
• Learn more about the joint initiative between the Peter MacCullum Cancer Centre and BCNA to support the making of a possum skin cloak available for Aboriginal and Torres Strait Islander people going through cancer treatment at the Peter MacCullum Cancer Centre.
• Hear from some Aboriginal and Torres Strait Islander women who share their experience of breast cancer.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258

Let’s be Upfront about where we’re at with COVID-19 at the end of what’s been a difficult year for all Australians and our health system. In this special episode of Upfront, BCNA CEO Kirsten Pilatti is joined by Cancer Australia CEO Dorothy Keefe, who looks back at the impact of the pandemic on the cancer space, potential silver linings to COVID-19 and how we ensure we are equipped to deal with the ongoing effects of the pandemic in a COVID-normal world.

We recommend this episode of Upfront is suitable for health professional audiences.

This episode covers:

• telehealth and areas for improvement in the system that harness the power of digital but remain consumer-focused
• the impact of the pandemic on the people that work in the health system
• hyperfractionation of radiotherapy
• the role of the shared care model and optimal care pathway in 2021 and beyond
• the potential impact in 2021 of the drop in breast cancer diagnoses this year due to the pandemic
• a way forward for ensuring breast reconstruction is a priority in COVID-normal

RESOURCES:

• Register as a Health Professional with BCNA to start signing your patients up to use the My Journey online tool, which has a dedicated COVID-19 information hub, tailored to diagnosis type.

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly empowered by Red Energy.

Want to get in touch? Visit our website at bcna.org.au, email us at [email protected], or call our Helpline on 1800 500 258