September is Gynaecological Cancer Awareness Month. Earlier in the month, we joined our Ambassadors, MP Meryl Swanson, Senator Anne Ruston, and Senator Sarah Hanson-Young, who hosted the Ovarian Cancer Press Gallery Networking Event at Parliament House. The event brought together media and parliamentary leaders, all united by a shared mission: to amplify the call for increased support and research.
Among the distinguished guests, Renata Potoczky courageously shared her journey living with ovarian cancer. Renata is a 44-year-old Adelaide local, daughter, granddaughter, sister, mum, girlfriend, teacher, and friend. Passionate about interiors, visual communication, design thinking, road trips, and dogs.
Diagnosed in February 2022, mid-career, with Stage 3 advanced ovarian cancer, she is currently in total remission, but without better detection and treatment options, her chances of survival beyond the next 4 years still sit at 29%. She has endured major surgery and 6 rounds of chemotherapy alongside regular weekly doses of exercise medicine. Renata wants to raise awareness and give back to an organisation that has been by her side since diagnosis.
Keep reading for the moving speech she delivered at the event:
“It's an honour to be here as a community ambassador to share my ovarian cancer survivorship story as part of Gynaecological Cancer Awareness Month. Standing here 20 months post-diagnosis, in complete remission from advanced or late-stage, high-grade ovarian cancer, but composed, confident, hopeful, happy, and connected, is a testament to the support services available for women like me with gynaecological cancer. Regular access to Renee, my very own ovarian cancer nurse since diagnosis, and Lauren, my psychologist more recently, both provided by Ovarian Cancer Australia, has allowed me to thrive and continue thriving in my survivorship, or maybe it should be called my 'thrivorship." I am so very lucky that these services exist for me.
At the start of 2020, two years prior to my diagnosis, my life was happy but tough. I was 41, juggling a new relationship, parenting a tween, and teaching while suffering from multiple pelvic issues and constant, nasty, and prolonged head colds. I remember turning to my colleague Kate on a number of occasions, saying, "Seriously, I can count on one hand the days that I feel well." All these symptoms were not ignored by health professionals but were attributed to age, lifestyle, normal female complaints, or circumstance. In a somewhat desperate effort to feel better, a few months before my diagnosis, I visited a naturopath, and I did get better for a while; my immune system seemed to improve, which was lucky because by that point, I had no sick leave left.
Now, in December 2021, I was unusually exhausted, had random rashes on my legs, forehead, and chest, and experienced some loss of proximal muscle strength. Blood tests indicated that I was "clearly unwell." Inflammation markers were as if I had "run a triathlon," and there was evidence of liver disease, results consistent with an uncomplicated but severe viral infection. To be safe, I had an MRI to rule out Multiple Sclerosis. The results were negative; I had a "very healthy brain." I was advised to continue resting and then re-test my blood. In January, my rash continued to grow, became itchy and hot, and I felt even heavier, more lethargic, and my liver function worsened. The doctor agreed that my illness was prolonged and that my next step should be seeing a liver specialist, not the infectious diseases unit.
By late January, my condition had deteriorated. I started having trouble swallowing, and my legs and arms, which were covered in a rash, began to swell, and basic living was out of reach. A chance meeting between my brother-in-law and a rheumatologist resulted in a desperate plea for help, and the suggestion that this was an urgent case of inflammatory myopathy. I was sent home with steroids, a new referral for blood tests to measure some new markers, but there was still a belief that it was an issue with my liver. The next morning, my doctor called and agreed that it could be what I now know is a very rare presentation of paraneoplastic Dermatomyositis, and arranged an urgent appointment with a rheumatologist for two days' time. That night, my mom moved in and became my carer. It was February 8, 2022.
I didn't know for a few weeks, after numerous tests, that my body's immune system, which was working hard to attack my cancerous tumors, was luckily attacking my muscles as well; they have the same chemical messengers. My rheumatologist confidently declared that, just like Willy Wonka, I had won a "golden ticket": we found the cancer, I would be cured and then also find myself in remission from this debilitating chronic autoimmune condition. I worked my way up to 50mg of prednisolone, they fast-tracked me to a successful radical debulking, a hysterectomy, and omentectomy, and then my very tired 'young' body luckily tolerated six cycles, 18 weekly doses of chemotherapy. I am not cured of cancer, but he was right; I am now in remission from Dermatomyositis.
At the time of my diagnosis, I registered for my very own ovarian cancer nurse as part of the Teal Support Program. Wonderful Renee would check in approximately every 2 weeks, and with her oncology experience, she could always predict what I would be experiencing, which was comforting. She was happy to speak to me in whatever state I was in and had the time to explain the options or the decisions made by my specialists, my physical symptoms, or why I was experiencing certain distressing feelings. Talking to her, I understood what was happening in and to my body; how everything I was experiencing was 'normal and common,' and this helped me be kinder to myself, make better decisions, feel encouraged, and worry less. It was also comforting to know that other women felt this way too.
Renee noticed I was struggling at the end of my treatment with fatigue and fears of recurrence, so she referred me to Lauren, a senior psychologist at the OCA. Lauren continues to help me understand my fatigue, how to articulate it, and how to manage it. She has written letters supporting my return to work, helps me understand and manage various frustrations and emotional reactions resulting from cancer and treatment, including ongoing physical symptoms, parenting, relationships, sexual and identity challenges and changes, and my future. She has identified and reminded me that the recovery from treatment is often slow, long, messy, and uncertain, and if I am feeling annoyed, that's totally reasonable.
As part of managing feelings associated with recurrence, which is alarmingly at 80%, she has reminded me not to think about the "destination but to enjoy the journey." So I am trying to take it one day at a time, carrying those worries with me, conscious of my cognitive and physical limitations, but not without hope and not being too hard on myself and others. Overall, my thinking is more balanced, and I am more composed as a result. I can be a better mum, partner, and professional. I understand that trauma shakes our ability to cope in a normal way, and worries and distress can be magnified. Lauren and Renee have helped me not get too down, too distressed, or fall into a big hole, particularly in this last year post-chemotherapy. They have encouraged me to address all sorts of issues, and I will continue to lean on them and take their advice, even if it's frustratingly slow, as I engage with life again.
In the future, I would like to see better survival rates for those of us who are diagnosed. I am told by my oncologist that I am on the right side of the statistics. As I stand here tonight at the age of 45, I have a 29% chance of making it to my 50th birthday. 71% of us diagnosed in these late stages do not survive five years, and a whopping 70% of ovarian cancers are already found in advanced stages. Although a rare, our survival statistics are poor compared to the average five-year survival rates of all other cancers nationally.
Looking back, I, like so many women, had no significant symptoms that would easily identify ovarian cancer, even though I was in the late stages when diagnosed. It had already reached my omentum and was on my spleen. I am okay for now. I hope I have won that golden ticket. I do desperately want to re-engage with life at full capacity, and so does my daughter, my students, my partner, family, and friends. Together, I hope we can continue to raise awareness and improve early detection, but for now, most importantly for us diagnosed, and those in the future, the support services at Ovarian Cancer Australia are crucial.”