Jenna had just finished university and at the age of 22, the next chapter of life unfolding in front of her should have been the most exciting. Having completed her exams, she thought feeling sick from fatigue wasn’t necessarily an unusual experience. However, the fatigue lingered and when she sought medical care, there were no clear answers.
Jenna carried on with extreme fatigue until she started feeling strong stomach cramps. This prompted frequent visits to seek medical intervention. “I had no idea what was going on for a year and a half having seen numerous physicians and was misdiagnosed with IBS and Chronic Fatigue Syndrome.” It was crippling and unfortunately, an all too familiar story for many women in her situation.
Eventually Jenna was diagnosed when a physician tested her for CA-125 and noticed the markers were very high. “On its own an elevated CA-125 reading is not enough to warrant extra testing but I pushed it with the gynaecologist and eventually, in combination with the other symptoms I was experiencing, she agreed to do exploratory surgery. I think she was looking for endometriosis.” During surgery, it was immediately obvious to the surgeon and the oncologist that they had found a primary peritoneal cancer in Jenna’s abdomen. “They took me into another room and told me I had ovarian cancer.”
“I felt a little bit of relief because I’d been sick for so long but I certainly didn’t expect to have ovarian cancer. I didn’t know anything about it at the time but researched it and found it was a death diagnosis really. My sister was a bit of a mess, she was beside herself. Mum and dad didn’t let on at the time but looking back they were in shock.”"
Jenna had four weeks to spend with family to get prepared, then she was into surgery and chemotherapy. “I was really nervous about the surgery – it was major surgery. It was bloody awful. Four hours of debulking surgery was required to scrape all of the cancer. I never had any solid tumours to begin with, I only had scattered cells all over my abdomen.
After the surgery, they put in a port so they could pour chemo into my stomach - they flooded me with chemotherapy.” Jenna remembers being rolled to one side for 15 minutes so the chemo would worked on that side, then rolled to the other side for another 15 minutes.
“It made me so sick – the chemo was inserted directly into the abdomen, but the worst day of my life was three months after the treatment. ..I was just starting to feel a tiny bit better...the doctor took my port out and took a cell sample.”
UNCERTAINTY OF PROGNOSIS
“I got a call to bring mum and dad along and it was just the worst day of my life. We sat down in the doctor's room and he said you still have cancer.” At that stage, Jenna was told is was best to operate again. She was advised that she should undergo a full hysterectomy and another six months of chemotherapy. But a few days later the oncologist said that perhaps they would wait and see what happens.
Jenna was being put on an emotional roller coaster, so often the case given the initial uncertainty of ovarian cancer prognoses. So she sought a second opinion from Professor Martin Oehler, who agreed that they should wait because Jenna’s type of ovarian cancer was slow growing.
“The initial treatment bought me about two years’ worth of time to live fairly normally. I was able to work but I knew the cancer was hanging around. I was put on a trial drug called ‘the Milo study’ but unfortunately after about seven or eight months it stopped working.”
BACK INTO TREATMENT
After this time period, Jenna was put back onto a more frequent and aggressive chemotherapy treatment. This bought her small periods of respite in between feeling quite sick, where she was able to live ‘normally’. During this time, Jenna was thankful for the care and support of her oncologist.
“I had wanted to visit America and Professor Oehler encouraged me to travel, to do the things I wanted to and to live as normal a life as I possibly could.” Jenna went to Hawaii the year after and was just thankful for feeling ‘normal’ during those few weeks.
“By this time he knew the outcome for me... but he never let on!”
“Professor Oehler was wonderful. He tried everything in his arsenal: chemotherapy, a trial drug, radiotherapy.” He was scouring the world for any new options he might be able to use to get a positive response. Unfortunately nothing worked and the cancer kept recurring."
Eventually after several years continually on and off courses of treatment, Jenna decided to stop chemotherapy. Once the realisation that chemotherapy was no longer going to be effective took hold, Jenna experienced an odd feeling. “It felt like a weight was lifted from my shoulders.”
But there were no more trials available and no other treatment alternatives. One of the priorities of the OCRF’s funding is into projects that consider treatment innovation – tackling chemo resistance and finding better methods to manage recurrence. There is a belief amongst the research community that more options for women with ovarian cancer are on the horizon.
THE FROCKTOBER PROJECT
“Absolutely any focus on ovarian cancer has to be a positive thing.”
Jenna was excited to learn that her cousin Jaimie had an idea to honour Jenna by designing and auctioning a special gown during the OCRF’s Frocktober campaign. “I’m so grateful to Jaimie for starting this project to raise awareness and raise funds for ovarian cancer research. He’s a wonderfully talented man and thanks to Julie Bishop for being a part of it as well – they’ve created a stunning gown for Julie to wear during Frocktober. Ovarian cancer desperately needs more funding and I hope this helps draw some extra attention to the cause.”
Jaimie is renowned Adelaide designer, Jaimie Sortino. He has been a couture designer for over 10 years and although he has had his collections exclusively shown in cities including New York, he expressed how this particular project is his most meaningful one. “It is without a doubt the most important gown I have designed in my whole career. This dress is made out of a determination to make a difference and to help raise crucial funds for the OCRF that will continue to support people and families in similar situations to my own.”
The gown, in Jenna’s favourite colour pink, has been designed for Julie Bishop and is being auctioned via Bid For Good here with all money raised donated to the OCRF’s Frocktober campaign.
View the auction for Jenna's gown
“Ultimately I hope that the trail is a bit easier for women behind me that walk my path. I don’t want them to have to do what I did. It has been absolutely horrible.”
At this point, Jenna’s Dad adds that Jenna’s experience showed how ovarian cancer is such a hard cancer to diagnose. Anything which can help produce an earlier diagnosis will lead to a greater chance of survival. “The money that is raised for research can be used to find that early detection test or develop more effective treatments that increase a woman’s lifespan and quality of life.” Having watched Jenna go through what she has these past 11 years, the hope has to be that other families don’t live the ‘ovarian cancer experience’ as a matter of course, and that change comes quickly.
Sadly Jenna passed away peacefully, surrounded by family, on Thursday October 8th 2020, aged just 33. She was in the care of the incredible nurses at the Laurel Hospice.
The OCRF would like to thank Jenna’s family for sharing their heartbreaking story and to Jaimie Sortino for continuing Jenna’s legacy through his beautiful creation.