Nina and Koula’s story ~ "Cancer puts everything into perspective"

23 Nov 2020

It's always been a deep feeling within me that our family history of cancer on my maternal grandmother's side was quite intense, and for about ten years I felt instinctively that something was awry.

For that reason, during my own two pregnancies (including a twin pregnancy!), my breast and ovarian health was top of mind even to the angst of my obstetrician (who always supported my concerns) and to my mum and my aunt who kept telling me I was a little crazy. But I was worried about our breast and ovarian history for a long time, even spoke to a breast surgeon while breastfeeding because I just couldn’t cope with all the lumps and bumps that come with that process.

Mum's diagnosis
Then a couple of years ago, we went out for lunch and my mum couldn't finish her food (she felt full after a couple of bites). She complained of some vague gastrointestinal symptoms that had been going on and off for about three weeks and some significant bloating. She seemed to have been putting a lot of weight on her middle without any apparent reason, as she was exercising and eating normally. She just put it down to menopause, which is something that many women do. We put it down to something that feels like an easy explanation.

So, I booked her in for a pelvic ultrasound on that Monday morning, without any referral or any doctor involved and just my brain thinking! And it was actually a really good thing to do because we caught cancer at a very advanced stage, but not stage four, which was a silver lining.

After that pelvic ultrasound, we were moved quickly to gyno-oncology and initially, we were supported by the Royal Women's Hospital and Professor Orla McNally, who was tremendous. They told us that they would go in and do the surgery first and then the chemotherapy. That was the plan, and once mum had the MRI, they were pretty definite that this was the way to go. So, she went into a three-hour surgery (which by some accounts, is actually a very quick ‘debulk’ as they call it) and then we had to wait for the results of the tumour analysis and chemotherapy.

Facing genetic testing as a family
As all this was happening, we were offered genetic testing 24 hours after surgery, which was a huge relief to me because I felt validated in over a decade of searching, and the crippling anxiety around my own breast health.

Two months later, there was a confirmed BRCA2 diagnosis, and within the week, my sister had flown in from London and we underwent genetic counselling as a family. My sister then found out she was BRCA2 negative, which was a huge relief as she was newly pregnant.

My preventative health journey 
I still harboured very big feelings that I would be positive. And I was right. I was positive.

A week after receiving that news, I was in an MRI machine. Luckily, that was a clean breast MRI with no suspicious areas. Then after a family holiday to Singapore, I came back to Melbourne refreshed and had the prophylactic mastectomy and reconstruction on September 5, 2019. This was a huge and lengthy surgery, but easily the best thing I've ever, ever done. I moved very quickly to do that surgery because I wanted it done while I was young and in good health (plus, I’m not a very patient person!).

I was very fortunate that I had my three boys in my mid-twenties, so I had no problems going back in March this year and having my fallopian tubes removed and my pelvic cavity is given the all-clear. That surgery was nowhere near as onerous as the breasts and was a very simple recovery.

Where we both are now
With mum’s journey right now, her CA125 levels, which is what they use to track the active disease have sat at seven. More recently, they are sitting at six on Lynparza. She’s spent thirteen months on Lynparza, and she has a few minor issues with the tablets, but she’s going really well.

We got very emotional a few months ago when her medical team even suggested she start looking after her own breast health and take some prophylactic surgical steps because they see her as surviving.

That is amazing for someone with advanced ovarian cancer.

We feel lucky. Mum’s oncology team is really amazing and we’ve moved closer to home now under the care of the Mercy Hospital for Women. I go to appointments and they basically give me advice as well, because there's no screening for ovarian cancer. And they know I'm really, really worried about it. They were the ones to tell me to go and do the preventative fallopian tube removal surgery. I've got a plan of attack for when I reach my mid-forties to take out everything else. In the interim, they've said to me to do ultrasounds, which I do, even though I know regular ultrasounds won't pick it up early, there's no harm in doing them. I have a few specialists and trusted doctors in the room that go through my pelvis every three months and similarly I do a CA125 test regularly also. It’s just part of my routine now – it’s become my “new” normal.

It would also be remiss of me not to mention that I have the most supportive and proactive GP on the planet, who both manages my anxiety but also keeps all the appointments on track and checks me regularly also.

This is my own way of managing BRCA2. It's overkill for some people who don't want to know, but I prefer to know. I'm just not afraid of cancer anymore. I know that if caught early, it can be managed. I’m starting to find some peace with it all.

That’s what cancer does; it puts everything into perspective.

At the end of the day, I think that if you love your life, you should invest in your health. If you feel a lump, don’t wait. If something doesn’t feel right, don’t wait.

As of 2023, Koula is doing very well off Lynparza since diagnosis Jan 2018.