Putting a face and a story to a diagnosis – The reality of ovarian cancer

07 May 2024

“We are real people, desperately trying to live our lives with our families and loved ones.”

In marking World Ovarian Cancer Day, we take a moment to acknowledge the trials faced by everyone with a lived experience of this disease. To show the real people behind the diagnosis, we share Christine's experience with you. As a loving mother and wife, Christine is an ovarian cancer survivor, her openness in telling her story provides a window into the realities of ovarian cancer but also serves as a source of inspiration for those travelling similar paths. Join us as Christine generously shares her struggles and the profound changes she faces each day.

“Research is everything when it comes to finding viable treatments for women like me. Without research, there would be no new possible drugs becoming available. Without research, this drug trial that I am on would not exist and I would have died by now. We simply must invest time, energy, and money in research. And we must be curious and open-minded in the approaches that are funded. Who knows what will trigger a Eureka moment that will open the door to a cancer cure and relegate cancer to the annals of history.”

In 2014, a diagnosis changed the course of Christine’s life forever. What began as a proactive measure, a risk-reducing hysterectomy and bilateral salpingo-oophorectomy upon discovering a familial BRCA mutation turned into an unexpected revelation: early-stage ovarian cancer.

Following standard frontline chemotherapy in the spring of 2014, she transitioned into a monitoring phase. Then in early 2020, subtle shifts in her Ca125 levels triggered renewed surveillance, leading to the discovery of recurrent ovarian cancer. Despite further treatments, including an allergic reaction to Carboplatin, she persisted through cycles of hope and setback, until she signed up for a clinical trial in 2023 that has her leading an almost normal existence for the time being.  

 

Pillars of support

In the moment of crisis, her family and support network emerged as pillars of strength. They became her sanctuary, propelling her forward.

“My family and support network have been integral in my ability to deal with this wretched condition. It is my love of life and my family that keeps me motivated. I hope to be a role model in the art of continuing to live despite the challenges. In being tenacious, of standing proud and tall in the face of adversity, and stepping into whatever each day has to bring. I find spending time with my family, however, the most beautiful of all the things that I do.”

An accomplished International Level Athletics Official, she continues to find solace in the simple joys of life; the laughter shared with loved ones, the warmth of family bonds, and the tranquillity found in nature.

 

Working with ANZGOG’s STS

Christine is also a volunteer of Survivors Teaching Students (STS), a groundbreaking program driven by ANZGOG in Australia and New Zealand, which brings gynaecological cancer survivors and caregivers into the classrooms of future healthcare professionals. 

 “I think the STS program and ones like it are useful. Anything that can raise awareness of the disease in our future medical and allied health professionals must be valuable. I also truly think bringing a personal approach to learning is far more memorable for students than simply learning from books, slides, etc. Putting a face and a story to a diagnosis makes it personal rather than theoretical.”

 

Taking a chance on clinical trials

Prompted by the dwindling options in conventional treatments, Christine found herself compelled to explore clinical trials. Initially, these trials had been in the background of treatment discussions with her oncologist, overshadowed by successive chemotherapy attempts. However, as Christine puts it, 

“My oncologist told me that ‘things were looking shaky and that I should sort my affairs out’. I was 57 with a long list of things that I still wanted to do with my life.In otherwise good health dealing with an uninvited intruder in my body that was (and still is) determined to kill me. But I am not easily defeated and when a Phase 1 drug trial came up, I was absolutely up for it. I was up for the commitment, the uncertainty, the traveling, the testing, and so forth.“

Christine recognised that bravery was not a choice but a requirement, acknowledging that the decision to pursue a trial was borne out of the stark reality that the alternative was to face mortality head-on. Christine is still in the clinical trial and continues to gain advantage from it.

 

The reality of living with cancer 

Despite her struggles, Christine refuses to give up hope and says,

“Balancing hope and reality is an extremely difficult situation. Being grateful for the time that I am currently living helps as I am in no doubt that I am living in ‘extra time’, to use a sporting analogy.  My biggest goals though are simple. To spend as much quality time with my family making as many good memories for them as possible. And I never let go of the slim hope though that something might yet come along that buys me the time on earth that I so clearly crave.”

She finds comfort in planning for the near future, but she tries not to look too far ahead to avoid disappointment when plans are disrupted by the unpredictability of cancer. Adjusting expectations becomes necessary.

 

Patients and their contributions to advancing gynaecological cancer research

In considering how patients can contribute to advancing gynaecological cancer research and improving outcomes for future patients, Christine makes a strong statement:

“It is clear that patient advocacy and patient awareness campaigns gain plenty of attention. As such I am a keen supporter of patients standing up and making ‘noise’. It is difficult in the current fiscal climate to be the noise that gets attention when there are so many worthy causes clamouring for fundraising or government dollar. But as patients, we must continue to raise awareness and put ourselves out there, no matter how hard and at times it is not easy, in the hope that a breakthrough is just around the corner and that women of the future do not have to fear gynaecological cancers.” 

Drawing from personal experiences within a family affected by cancer, Christine is driven by the desire to spare future generations from bearing the burden of this disease. She asserts that researchers should not only focus on the clinical aspects of cancer but also acknowledge the human faces behind the statistics and says:

“I also think that researchers need to see the faces of those impacted by these diseases. Cancer is far more than a pathology slide, a blood test result, or an imaging picture. We are real people, desperately trying to live our lives with our families and loved ones.”

 

The importance of gynaecological cancer research and advocacy

Christine's journey through ovarian cancer shows the profound impact of the disease on real lives, families, and communities. Her story, not only sheds light on the challenges faced by everyone with lived experiences of ovarian or any other gynaecological cancer but also highlights the critical importance of research and patient advocacy in driving progress against this disease. She reminds us that behind every statistic lies a human story waiting to be heard.

If you need further information about ANZGOG’s Community Engagement Program please contact Volunteer Coordinator Aimhirgin Byrne at aimhirgin.byrne@anzgog.org.au.