In 2025, There’s Still No Way to Detect the Most Deadly Female Cancer

This is 'off topic' for this Substack, but if you are a female or you know one – here's why you should care.

May 08, 2025

This isn’t a ‘business’ post; so bear with me. Today is World Ovarian Cancer Day, and if you are a female or you know one – it’s relevant to you. It’s URGENT for you. I tossed up whether to post it here but for that reason alone, I did. Back to usual programming next week.

(And if you like the odd personal post here – let me know. I have a second publication in mind to post more of it).

The few times my life has been flipped upside down, it’s happened with a simple phone call – usually in the afternoon, and usually on a perfect Autumn day.

(I’ve always hated phone calls, but I hate perfect Autumn days now too).

This phone call came in early March 2022.

Heavily pregnant with my second little girl, I was mostly au fait with motherhood by this point – though that hadn’t always been the case. I’d had my first little baby, Jimmy, two and a half years earlier and struggled with being a mum in those early days. Juggling a growing business and a little baby that hated sleep, I spent months and then years fraying at the edges.

Thankfully, my mum had been there – just as she always was.

Every afternoon since Jimmy’s birth – always armed with a smile and usually freshly pureed veggies too – my mum would show up at lunch time to walk our little Jimmy up and down the beach, feed him in the highchair and give me a chance to work.

She relished her role as ‘Nansy’, and the bond between the two of them was so tight.

Besties, they were.

This particular afternoon was just like every other. I worked in one room, she was singing to Jimmy and getting him ready for his walk in the other. Until, it wasn’t.

That afternoon, the phone rang and our entire lives crumbled. I heard the muffled conversation, and I knew. Somehow, I just knew. The strained tones. Her face. It wasn’t good.

A week later, we were sitting with the oncologist.

Primary Peritoneal Cancer, he said – a gynaecological cancer very similar in nature (and treatment options) to Ovarian Cancer.

We’d never heard of it, and anyway, after a hysterectomy at 42 SHE DIDN’T EVEN HAVE OVARIES ANYMORE.

It didn’t matter, apparently. The cancer had likely started in her fallopian tubes, spread to a little piece of ovarian tissue still hanging around and then moved into her peritoneum – a cellophane-like wrapping that lines the abdominal cavity.

There’d been no symptoms, until one day a couple of weeks before her belly had felt bloated and sore.

‘Ascites’, said the oncologist.

‘It’s fluid build up in your tummy – common with more, er, advanced cancer’.

‘Is this it?’ I wanted to shout. ‘Will I lose my beautiful mum; my everything? WHEN?’

I didn’t say that, though. It would have been too painful for her and for me.

Instead, I asked what stage the cancer was. His answer mostly told us everything we were both wondering anyway.

‘Stage 4’, he answered.

He looked at his notes.

‘Actually, 4B. Come in next week, we have an information session to help you through’.

The info session was a pamphlet and a tired powerpoint presentation in a small room with fluorescent lights. There was a small group of us. A couple in their sixties. A lady in her forties or so, alone. And us.

The session was typical of the care that followed. Formal. Barren.

‘You’ll lose your hair’, they said. We went shopping for a wig that afternoon.

‘Everyone’s prognosis is different’, they said. Only we’d Googled, and they didn’t look so different. In fact, the survival statistics for peritoneal and ovarian cancers look devastatingly slim across the board.

And finally – ‘we’ll schedule your first round of chemotherapy for next week’.

And so the merry go round began.

Anyone that has supported a family member or loved one closely through ‘the process’, or who (YOU ARE AMAZING) is going through ‘it’ now will know what I mean by that.

The weekly chemo appointments. The aftermath – a day or two of ‘zing’ thanks to heavy medication followed by four or five of heavy bed rest, bloated extremities, nausea, sickness. The loss of feeling in fingers and toes. The hair falling out in clumps – and the loss of identity that follows. The sudden illnesses and hospital visits where you wonder – is this it? The excruciatingly painful open chest surgeries. The quiet nights wondering what’s to come. The not knowing. The knowing. All of it.

I feel blessed to have been able to support my Mum through her most difficult days, just as she had supported me my entire life. I had a front row seat to every appointment, every surgery, every false hope.

I saw it all. And, I saw her.

My mum was the toughest always; but through those times? I’ve never seen someone so resilient, brave and heartstoppingly courageous.

‘You don’t really have a choice, do you?’, she told me, smiling. Always smiling.

But of course, I saw the fear too. It was quiet, spoken aloud just once or twice and otherwise present only in little flashes whenever we received the next piece of bad news.

I felt it too.

The fear that she wouldn’t get to see Jimmy every day, or watch my new little girl grow up, or have the energy to walk the beach path anymore. The fear that despite the little hopes, it could or would all come crashing down at any time. The lingering wonder whether today was her last July day, or summer day, or Christmas day. The fear that this.. all of *this”.. the treatments, the sickness, the merry go round, was all that was left. Knowing that it was. Hoping against hope that it wasn’t.

—

I lost my Mum on May 2 of last year; two and a bit years after diagnosis.

It was a few days short of both Ovarian Cancer Day and Mothers Day.

I miss her. Those three words feel like an understatement, but there aren’t really words anyway for how I really feel anyway.

I’m not sure what’s worse – watching the person you love the most experience pain every single day, or trying to navigate the pain of not having them by your side, not ever again, for the rest of your life.

Of course, it’s both.

The truth is, losing a beloved parent changes you. I read somewhere a few weeks after that losing your mum feels like wanting to go home, and knowing you never can again. That’s it. It eats through the very fabric of your being and everything you hold true. It rips your security blanket from you.

I’m sad for me, but more than that – I’m sad for her.

My mum didn’t get to see my little boy start school this year. Or my little girl turn three. She doesn’t get to come shopping on Saturdays anymore, or walk to the park with us, or enjoy the rest of the ‘golden years’ she savoured so much.

She wasn’t ready to go; she told me so.

And for that, I’m not just sad but also? Angry.

Every woman should be, really.

Here’s why:

This isn’t just about my beautiful mum, or about me.

Every single day in Australia alone, we lose three women to ovarian cancer (her peritoneal cancer was always put in the ‘same bucket’; its cells are the same). Ovarian cancer is Australias most deadly female cancer (and actually, primary peritoneal cancer is not just female – men can get it too). And in cancer circles, ovarian cancer is universally known as the ‘wrong cancer’ to get.

The doctors, the nursing staff – they all know how it starts (usually, only diagnosed at advanced stages due to no early detection test), how it goes (woefully outdated treatment options that haven’t materially changed for THIRTY YEARS) and how it ends (one of the cancers with the very poorest prognoses due to chronic underfunding).

I could always see it on the faces of the medical staff in the chemo ward when they read my mums cancer type. The look they gave us. The knowing. It was never good.

The truth is, one in 130 women will get ovarian cancer in their lifetime. And worse, if they do it’s likely already going to be advanced (most ovarian cancer is detected at stage three or four), and their chances of survival one of the lowest of all cancers.

These are the precious lives of our beautiful mums, sisters, wives, daughters and friends. These are OUR precious lives.

It’s not okay.

And yet, due to chronic underfunding, we’re not giving ourselves and our loved ones the chance to fight this that that they all deserve. Without action, more than 2.2 million women will die from ovarian cancer over the next 10 years.

The only ‘good’ news that comes from knowing that? Is that actually, this doesn’t need to be ‘just the way it is’.

There is one key – research funding – that is capable of unlocking that for all of us and changing the story for millions of women in the future.

Research funding can give us the more that my mum deserved.

That every woman with ovarian and related cancers deserve.

We need three things:

1) An early detection test.

My mum found out that she had Ovarian Cancer when it was Stage 4b. She had no symptoms until the cancer had progressed to a point that there was very little hope.

That should appall you. It did me.

Here’s why that is the norm for most women who are diagnosed.

Right now, there is no early detection test for ovarian cancer. Even worse, there are no warning signs – other than those that whisper quietly and usually mirror menstrual pain or digestive issues.

No, a pap smear doesn’t detect it – that’s cervical cancer, and yet so many women walk around thinking they’re covered when they are very much not.

That’s a hard truth because ovarian cancer, when found early, can be cured.

According to UNSW Sydney Professor Caroline Ford, “If we can detect ovarian cancer at stage one, the survival rate should jump to around 90% which will be a game changer in tackling this disease.”

A day needs to come, and soon, where we can book into our GP just like we do with cervical cancer and book a regular screening appointment.

2) Better treatment options.

My mum had one treatment plan available to her:

Chemo, followed by open chest surgery (called ‘debulking surgery’), followed by more chemo.

Is it a cure?

No. There isn’t one.

These invasive treatments buy time, and usually not enough of it. More than half of ovarian cancer patients don’t live more than five years after diagnosis.

The truth is, ovarian (and peritoneal) cancer is difficult to treat because there are so many different sub-types. A week before my mum passed, she paid close to $10,000 for a report to help her determine whether there was any personalised treatment options available to her.

It was offered as an option far, far too late.

And, she didn’t live long enough to find out.

We can do better, by actively funding initiatives to increase five year survival rates for the next generation of women through development of testing and increased access to innovative personalised treatments.

3) For ovarian cancer (and related gynecological cancers) not to be the death sentence they currently are.

The 5-year survival rate for ovarian cancer is 46%. That’s the same rate that all cancer survival rates were at back in 1975 — meaning ovarian cancer is more than 30 years behind.

Whilst all cancer survival rates have increased to 70% in the thirty years since, ovarian cancer survival rates haven’t budged from 46% and in fact are declining.

The World Ovarian Cancer Coalition estimated in a recent report that if nothing changes, there will be an 81 per cent increase in ovarian cancer deaths in our region by 2050.

The culprit? Funding. It’s historically low, and always has been.

But! But! But! We can change it!

We did a tremendous job, and continue to do so, with breast cancer.

According to the Ovarian Cancer Research Foundation, improvements in survival rates for breast cancer came from dedicated research, early detection tests, public campaigns and advocacy.

Five year survival rates for breast cancer are now over 91%. Breast cancer is no longer the death sentence that ovarian cancer still is.

We can do the same for ovarian cancer.

The goal?

For every woman diagnosed with ovarian cancer to have that first scary meeting with their cancer doctors that my mum had, only with a very different outcome:

To be told that their condition is treatable.

To be able to come home and tell their children that their condition is treatable.

And for them to continue to live, because their cancer was detected early enough and because the treatment options are now personalised enough thanks to the work done in the ten years prior.

May 8 (today, if you’re reading in real time) is World Ovarian Cancer day.

Here’s why I wrote this — because I know for SURE that it’s possible to change the outcome for women. Because we did for breast cancer. And because this actually doesn’t need to be a death sentence — and yet it still is, simply because it’s not getting enough funding to drive the research ALREADY BEING DONE BY INCREDIBLE PEOPLE.

Here’s a few ways you can help.

1) Look after yourself:

There’s two things you need to know – that a pap smear doesn’t NOT detect ovarian cancer, and that there are a few symptoms to look out for.

I remember my mum not coming to lunch with us one day because she, in her own words, ‘had a bit of gastro’. I reckon that was the OC, and that’s the sort of non-descript thing we need to take seriously.

Also, advocate for yourself. Go to the doctor, and make them listen to you. I think every woman can attest to being dismissed at once stage or another by the healthcare system or authority (like that time I passed out in a toilet at 21 from I’d later find out was severe endometriosis, only for the policeman who found me to assume I was having a drug overdose and to ‘just get up’ – yes, really 🙄).

Don’t put up with it. If something feels off in your body, it probably is. Chase it up yourself, no-one else will.

2) Donate (individuals):

Pledge a donation to help the scientists working on a cure for this thing.

Help them to fund research for an early detection test and for personalised treatments to improve outcomes.

There are two people I recommend donating to:

Gynaecological Cancer Research Group: Dr Caroline Ford (UNSW) and her team are actively working on an Early Detection Test.

“We really need to focus on this disease. We need to develop an early detection test that will change the outlook for this disease, and therefore change the lives of millions worldwide. If we could pick up the cancer early, at what we call stage one, the survival rate is as good as a cure.”

Please watch this: https://www.camillaandmarc.com/blogs/all/meet-the-research-team

Donate funds to help their research (clothing company Camilla and Marc are spearheading donation efforts for Dr. Caroline Fords efforts, they also have a range of apparel with 100% of proceeds going to their research, you can purchase here).

If you don’t have the funds and you live in Sydney, you can also donate blood.
Ovarian Cancer Research Foundation [OCRF]: Donate here to support funding for different research initiatives.

3) Donate (businesses):

I have a vision for small, female-owned (or supportive!) businesses to band together to help fight this thing – committing 1% or a tiny portion of revenue each month to collectively make a big difference.

I’m working on the details of this behind the scenes (slowly, surely), but if you’re a female small business owner (and it likely is if you’re reading this on my Substack), let me know in the comments if this speaks to you — and make a tax-deductible business donation from your business in the meantime using the links above.

Parting note:

I get that lots of charities ask for donations. All of them are worthy.

Here’s why you should consider taking action.

I have spent many, many days for the last few years in chemo wards full of beautiful women with ovarian cancer diagnosed too late, and for whom there are no treatment options.

On the flip side, there people every day working so hard on an early detection test and to improve treatment options; and the only thing stopping them from making faster progress is funding.

We improved breast cancer outcomes to 91% with lots of people donating a little.

We can do it with ovarian cancer, too.

PS If you’ve read to the end, let me know in the comments. I’ll give you a big virtual hug.