My name is Jacinda, and I’m reaching out to seek your support, guidance, and partnership as I navigate a rare cancer diagnosis and the next phase of my treatment journey.
I was initially diagnosed with mucinous ovarian cancer in 2023, at which time my left ovary was removed, followed by chemotherapy (CAPOX). Unfortunately, I experienced a recurrence in 2025 in my right ovary, which resulted in the removal of my right ovary and further chemotherapy (carboplatin and paclitaxel). I am now facing a further recurrence and am currently classified as Stage 4.
My care team is based at Chris O’Brien Lifehouse, where I am under the care of Dr Michelle Harrison and Dr Selvan Pather. I have also consulted with Dr Yoland Antill in Melbourne, who is now coordinating my referral for the pre-ORCA program, which involves a fresh tumour biopsy and drug sensitivity testing to guide future treatment options.
Given the HER2-positive nature of my disease, I have recently commenced targeted therapy with trastuzumab deruxtecan (Enhertu). While this is currently one of the most effective global treatment options available for my cancer profile, I understand that it is not a curative solution. This cancer can develop resistance to Enhertu over time, meaning it can suppress disease progression but does not eliminate the cancer entirely. This reinforces the importance of proactively exploring next-line and personalised treatment strategies.
Whilst Enhertu is listed on the PBS and subsidised for some cancers. It is not listed for mine. This means that I am required to pay out of pocket for 6 of 12 sessions at a cost of $10,000 per session.
Mucinous ovarian cancer is an extremely rare subtype, with an estimated five females currently diagnosed in Australia. As you would know, this rarity significantly limits standardised treatment pathways and available research, requiring a more proactive and individualised approach to care.
From a personal perspective, I want to emphasise that I approach this with a positive and proactive mindset. I am naturally outgoing and resilient, and I have never viewed my diagnosis as a burden. I am very fortunate to have a strong support system around me, which has meant I have not felt the need to share my story widely.
However, I am beginning to understand how important it is to advocate for yourself as a patient, particularly in the rare cancer space, and to contribute to greater awareness.
As my current treatment and the evolving nature of my care involve significant out-of-pocket costs, I would appreciate any support. Thank you