a rare purpose by Jemma Caprioli

"I didn't expect the cancer to fix everything."

In this episode, I had an incredibly moving conversation with Sandra Russell, a former psychotherapist and author of "The Feeling of Cancer".

Imagine you are diagnosed with a cancer that's so uncommon that even your doctor is uncertain of the pathway you need to take. You are isolated in your illness and you turn to investigating yourself online. Is it right that because your cancer is rare, that you should receive less support? When you have a rare cancer the treatment options are often more complex, and alongside complexity comes expense. 

A compelling and emotional episode that touches on the many challenges young women affected by Cancer go through. Joined by the founder of the not for profit Cancer Chicks, Michele Molnar. We have a candid conversation about relationships, emotional wellbeing, parenting, and grieving our body parts. Although Cancer can take a lot from you, Cancer Chicks is about finding community, your tribe, and a place of belonging so you can find meaning and friendships beyond your diagnosis. 

Professor Parry Guilford is known for successfully in identifying the first known genetic mutations in the CDH1 gene, leading to the description of a new cancer syndrome Hereditary Diffuse Gastric Cancer (HDGC). This discovery has conservatively saved 27,000 people from developing a severe form of stomach cancer. Parry is determined to continue to change the course of HDGC stomach cancer patients outcomes, he is invested in the CDH1 mutation families and feels their trials as if they were his own. We discuss genetic counselling, the age at which we test our children for hereditary cancers, his work on lobular breast cancer, bowel cancer and funding research. 

Professor Alex Boussioutas is one of Australia's most prominent and accomplished Gastroenterologists. We dive right into a conversation about the latest innovations in cancer surveillance and precision medicine. As a GI Cancer specialist Alex talks about the prevalence of bowel cancer in Australia and we chat about screening challenges and the need for further education in the community. Alex is also the Director of Genetics and Genomics at The Alfred, so we touch on genetics in respect of rare cancers, and finally Alex shares his perspective on patient experience. 

'What do you mean you don't have a stomach?' This is a question our very first podcast guest Julian Grennell often encounters, and a reality he shared with many other members of his family after discovering they all carry the rare genetic mutation of CDH1 Hereditary Diffuse Gastric Cancer. We dive into life post total gastrectomy and how Julian was inspired by his diagnosis to challenge himself by pursuing endurance events. Through his journey he has questioned the support available for cancer patients and their families, and as such launched himself into advocating for the Not for Profit sector, recently becoming the president of NZ Cancer Society.