Radio Rare

Our guest this week, making his debut appearance, is Mike George. One of a small number of Australias, who has undergone a laryngectomy. Mike talks us through the journey of his diagnosis, and advocacy work. As you'll hear not having a voice box hasn't slowed Mike down, hear him tell his own story.

Palliative Care. Two words that often cause so much discomfort and fear, but what do we really know about it? Join Dr. Emily and Sidekick James, as they dive into the world of Palliative Care.

CAR-T: Easy to spell but hard to explain. So, we took a shot at breaking it down. This week's Rare Bites reaches out to explore the world of CAR-T Therapy, how it works and what it does. We even find out how it feels. Tune in each week to Rare Bites for more bite-size info in the cancer space.

There are so many things that go into getting Medicines to the public, and so much of it is confusing. So we thought we'd break it down. #RareBites

There are so many things we wish we could un-say and take back, but sadly, it doesn't work that way. So here's the next best thing, 3 Golden Rules to help you say the right thing to someone going on a cancer journey. We've also included a few things we've heard or have been said to us at RCA, so you can see how much impact words really have.

Rare Bites is our new short-form podcast series where we take a look at complicated topics and questions in the cancer space and bring you some bite-sized answers. In episode one, we look at Sex, Intimacy, and where they fit into the cancer experience. Do people with cancer have sex? How can you be intimate while living with cancer? And what about masturbation? These are important questions that n...

For our final episode of Radio Rare, we chat to Rare Cancers Australia (RCA), CEO, Richard Vines as he pulls back the curtain and talks about how RCA came to be and why the need is so great. All clips in this episode can be found in Season One of Radio Rare.

Ben shares the heartfelt cancer journey of his family when his wife Donna was first diagnosed with a rare cancer. He recounts from the time of the first biopsy, through the ups and downs that no-one sees coming. Motor Events 2020 Motor Events has Australia's most diverse competitive grassroots racing events that YOU can be involved in! No huge expenses to get started, no confusing rules or restric...

Hosam is a father of 3 and a dentist by career. In 2009, he was diagnosed with a rare type of brain cancer and in this episode of Radio Rare, he shares the strange experience that he had when he was first diagnosed and describes the highs and lows of his rare cancer journey. Today's episode is sponsored by Care Connected

As precision medicine looks to provide new hope to cancer patients, we speak to Professor Sean Grimmond from the Melbourne University Centre of Cancer Research. Professor Grimmond discusses how far Genomic sequencing has come and how much further it will go. Today's episode is sponsored by Care Connected

To round out Sarcoma Awareness Month we speak to Ewing Sarcoma survivor and member of the ANZSA consumer advisory panel, Julijana Todorovic. Julijana was diagnosed at the age of 22 and dives into how a cancer experience can feel as though you are at a crossroads.

From working in the mines in Queensland to having a life-changing CT scan which revealed a lump on the brain. Luke Bourne shares his 5-year experience of living with an incredibly rare cancer known as Alveolar Soft Part Sarcoma. Lifeline: https://www.lifeline.org.au/ Beyond Blue: https://www.beyondblue.org.au/

Dr Denise Caruso, CEO of the Australia and New Zealand Sarcoma Association, ANZSA, chats with Dr Emily Isham about sarcomas, clinical trials for rare cancers, and how to educate without inducing paranoia.

20% of childhood cancers in Australia are Sarcoma. Tania Rice-Brading, co-founder of the Cooper Rice-Brading foundation shares why she is passionately striving for more sarcoma research and we also hear the emotional story of who the Cooper behind the Cooper Rice-Brading Foundation is. A note that the conversation contains stories of childhood cancer which may be upsetting for some listeners. Plea...

Dr Emily Isham talks with Judi as she shares her remarkable cancer experience from the beginning of her diagnosis, what it's like to live with a rare cancer, her close encounter with mercury poisoning, and how she has picked up the slack when it comes to finding support.

Patient advocate and founder of the Patient Voice Initiative, Jessica Bean, discusses some topics that are central to many rare diseases, not just rare cancers, clinical trials, compassionate access, and patient advocacy.

It is common to think that a cancer journey ends once a person goes into remission and it can feel as though the parade has passed by. Professor Bogda Koczwara from Flinders University talks about the true meaning of Cancer Survivorship and how Australia's healthcare system is dealing with this phase of the cancer journey.

Professor David Thomas from the Garvan Institute of Medical Research provides a glimpse of what the future of cancer research could look like. Professor Thomas gives us an insight into the man behind the white coat, how patient experiences shape his daily work and how molecular medicine is changing things for patients of today and tomorrow.

Dr Richard Tothill from the University of Melbourne gives us a glimpse into the future of cancer treatments, particularly in CUP and NETS. His research in genomics is bringing cutting edge concepts to reality and we are on the cusp of a seismic shift. For this Genomics Group leader, it's just another day in the lab.

Christine Cockburn, Head of Support and Operations here at Rare Cancers Australia shares the emotional story of caring for her mum during her cancer journey along with the roller coaster that was her own cancer journey. Christine provides insight from not only a carers perspective but a patient perspective as well.

Adam Lynch, father of two children and founder of BEAT Bladder Cancer Australia shares the journey of his late wife Anna as she tried to overcome Bladder Cancer. Adam dives into the inspiration of founding BEAT Bladder Cancer Australia.

Scientist, advocate, mum and caregiver Dr Rebecca Kelly sits down with us to talk about the highs and lows of caring for her to 8-year-old son Ryan who was diagnosed with leukemia. Dr Kelly dives into the hurdles of a new diagnosis and being able to advocate for a sick child and keep everything else moving along.

Clinical psychologist of more then 30 years Bruce Schubert shares his observations and thoughts around the current state of physical distancing and how some are more suited to it than others. Bruce and Emily chat about what cancer patients have known for some time, that life doesn't always go the way you expected it to.

Often the glue that holds it all together when someone is diagnosed, is the carer. They don't sign up for the role and like the loved ones they care for - they don't expect it. Simone Cloake tells her story of caring for her Dad after being cancer free for 21 years and diagnosed with a rare cancer called Cholangiocarcinoma.

Carers play a crucial role in a cancer patients journey often being the anchor to everyday life. In episode 3 of Radio Rare Mohab Kamel very kindly and honestly shares the experience of his and his wife's cancer journey. Mohab also shares how he coped through the financial and emotional struggles.