April 20, 2025 • 23 mins
More than 1800 women have shared experiences of feeling gaslit, being dismissed by doctors or being told their pain was in their mind as part of The Sydney Morning Herald and The Age’s investigative series into medical misogyny in Australia’s healthcare system.
Among the most alarming stories are those of almost 60 women who detailed their delayed cancer diagnoses. Some spent years in pain or with symptoms that they said were fobbed off, treated with suspicion or misdiagnosed.
Jenny Piper’s story is a powerful and harrowing example of this.
In this special episode, the Sydney woman explains how her cancer was missed by medical professionals. And how she is now facing the end of her life.
For more, read the medical misogyny investigation here.
Subscribe to The Age & SMH: https://subscribe.smh.com.au/
See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:01):
From the newsrooms of the Sydney Morning Herald and The Age.
This is the morning edition. I'm Samantha Selinger Morris. It's Monday,
April 21st. Jenny Piper, a Sydney mother of three, started
asking her general practitioner about her bizarre symptoms in 2015.
(00:22):
What was up with the intense bruising up and down
her limbs and the excessive facial hair? And what about
the weight gain that she just couldn't budge no matter
what she tried? Menopause, said her GP. Stress again and again.
This is what she was told over eight years. When
Jenny would ask, what is wrong with me today? Health
(00:44):
editor Kate Aubusson on why doctors missed the signs that
women have cancer. And Jenny Piper on nearing the end
of her life after a misdiagnosis. Welcome to the podcast,
Kate and particularly Jenny. Now you're both here to discuss
(01:06):
some really shocking examples of misogyny in our healthcare system. But, Jenny,
you've got your own story to tell. And I was
wondering if you could just start by sharing with us
what symptoms you first began experiencing eight years ago. What
were they and what were you telling your doctor about
them at the time?
S2 (01:22):
Well, at the time when I started experiencing the symptoms,
it was probably about 2015 and I just didn't feel well.
I felt generally unwell. But also what was happening is
I was I was getting these marks on my arms
every time I bumped into something, it would be like
I'd be bleeding under the skin. So it wasn't a
classic bruise, like a browny bruise. It was this marks
under my arms. And, uh, um, also, I was starting
(01:46):
to sort of develop a little bit of facial hair
and moustache. Anyway, I was actually seeing, um, a different
GP at the time, and, um, she sort of put
me on hormone replacement. Thought it was menopause. It hurts.
You retired and so I changed to a GP. That
was closer to where I was living. Um, around that time.
And she was very good to start with. She, um,
(02:08):
you know, kept me on hormone replacement and things like that.
But as the years went by, the bleeding under my skin, um,
was getting probably worse. My hair started falling out. Um,
and I'd put on a lot of weight, and I
had tried diets. I went to dieticians. Um, I, I
tried everything. There are just a whole lot of vague
symptoms that they obviously didn't send any alarm bells to
(02:30):
my GP, and she just put everything down to lifestyle and,
you know, lose weight, um, get healthy, yada, yada.
S1 (02:38):
And so just to clarify, if we're talking like a
7 or 8 year period, even so, you might have
gone to the GP, what, like 12, 15 times in
that in that period. And in each in each one,
you kept repeating that you're having these symptoms and they're
not going away. Is that right?
S2 (02:51):
Uh, yeah, I would always she'd always say, how are you?
And I say, oh, I'm so tired all the time. And, um,
I mean, I probably just gave up complaining about my
weight because she kind of would say, oh, well, see
a dietitian do this, but I used to exercise all
the time. I watched what I, what I ate, and
I still couldn't lose weight. And I actually think she
didn't believe me. She didn't believe that I was trying
(03:12):
to lose weight. I think she just thought, um, I
don't know, middle aged woman, um, you know, having a
few too many wines, I don't know. Well, I think
by the end, I just, I just went because I
had to get my prescriptions. To be honest, I was
sick of being dismissed by her. And actually, we ended
up having quite a big argument because I just said
(03:32):
to her, look, there's something wrong with me. You know,
you need to send me to a specialist or something.
She said, well, it's up to you to ask for
a specialist. And I said, I beg your pardon? She said, well,
you know, we'll investigate it further when you come back
from overseas. She also said to me, I think, in
the same conversation over the phone that, uh, don't eat
too much pasta while you're in Italy. And I said,
I beg your pardon? And she said, well, you know
(03:54):
how you worry about your weight.
S1 (03:56):
And then in June 2022, you had a completely unrelated
surgery to treat varicose veins, but doctors actually noticed something
in a CT scan. So what did they find?
S2 (04:07):
So, uh, during the surgery, I had breathing issues, and so, um,
I had a whole lot of tests while I was
in the hospital. And one of the tests they ran
was a CT scan. And, um, as it turns out,
I didn't know at the time. But as it turns out,
on the report, um, it said that there was a
three centimeter adenoma on my adrenal gland, which are required
(04:29):
sort of further investigation.
S1 (04:31):
And that's a type of benign tumor. Is that right?
S2 (04:33):
Yes. Well, it could it could be benign, but, um, uh, yeah.
At the time, the doctors, several doctors got that report. Um,
they didn't read the report properly. I didn't know about
the report. Uh, until fast forward to January, December 2023,
when I was seeing the surgeon who was going to
remove my adrenal gland because of the tumor. He mentioned that, oh,
(04:55):
you would have had a CT scan. And so I
went back and, um, had a look. That's when I
found out that it was there. So it was three
centimetres in June 2022. Um, and when I had the
scans in November 23rd, it had grown to seven centimetres. So.
S1 (05:11):
So just to be clear, you had the CT scan
in June of 2022, and doctors actually did find a
three centimeter suspected tumor. But and it was in the report.
But you're treating clinicians just didn't read that. They only
read the conclusion. And so you actually didn't find out
that you had this tumor until 18 months later, by
which time you had another CT scan. And it had
(05:33):
shown that that tumor that was originally three centimeters, now
it's seven centimetres. It's cancerous. Is that right?
S2 (05:38):
Yes. So it was cancerous. They took out my adrenal
gland and um, uh, my so that was in January 24th.
They took out my adrenal gland. I had radiation treatment
for five weeks, um, to, uh, kill any cells that
would have been around localized. And I had another scan
in October, uh, 24. And, uh, there were metastases in
(06:01):
my liver and too many to, uh, operate.
S1 (06:04):
And I have to ask you, so what was your
response when you find out, actually, doctors had known about
this tumor and they just didn't tell me. And now
it's grown and now it's cancerous. What was your feeling?
S2 (06:15):
Well, they didn't know because they didn't actually read the report.
They've only found out, um, since we I did make
a complaint to the health care, uh, commissioner about them. Um. Oh,
I guess I was angry that. How could this have
been missed? Um, yeah. Yeah, I was probably. I have
(06:36):
to say, I was devastated, really, uh, to find out. But,
you know, at that stage, um, you know, I was
when I found out it was pre my, my surgery,
so I was hopeful. Oh, well, they'll take the adrenal
gland out. That'll be it. And, you know, um, the
cancer I've got is is very, very rare. It's 1
in 1,000,000 people. And so, uh, don't Google it because
(06:57):
the odds are terrible. But I thought I'd be the
one who would beat the odds. I'd have the surgery,
have the radiation, and go on to live, you know,
a cancer free life.
S1 (07:07):
Kate, I just want to turn to you for a moment.
I really want to ask you, you know, because you
have reported so much in this space that you know
what shocked you most about Jenny's story?
S3 (07:16):
Jenny's case should be shocking. It should, unfortunately, just doesn't
shock me anymore. So many of the aspects of Jenny's
case are mimicked in the stories that other women have
told us over the last few weeks and months. And
I guess what's particularly concerning is the degree to which
these women go to, to, to be heard, to feel
(07:37):
like they're being heard and feel like they're being believed.
And and some in Jenny's, like Jenny did at some
stages just thought, yeah, well maybe I am complaining too much.
Maybe this is just what it's like. Other women just
had their pain dismissed for months, as Jenny did for
years as Jenny did. And you know, I do understand
(07:57):
that part of a GP's role and I should say,
not all of these cases relate to GPS, but part
of a GP's role is to keep the healthcare system healthy.
And part of that is saying to patients, well, you know,
let's wait and see. Let's I'm not sure you need
to go for a scan yet. I'm not sure you
need to see a specialist yet. Let's let's wait and
see because that keeps our system ticking over. You know,
(08:19):
wait lists don't don't get longer and longer. Medicare doesn't
get overloaded. But you got to ask yourself, when these
women are going back so many times with these unremitting,
unexplained symptoms, is it time to investigate further? Or as
Jenny said, time to time to be a little bit
more curious to to live in the uncertainty with these
(08:40):
women instead of dismissing them, instead of being like, oh, well,
you know, pain is women's lot in life. You're menopausal.
You're emotional. You're. Some women would call it hysterical. Some
women were melodramatic.
S1 (08:57):
We'll be right back. And, Jenny, I just wanted to
come back to you and ask you how you feel
about specifically. I imagine, you know, when I read your story,
I thought as a layperson, okay, it seems like this
was potentially an avoidable outcome, you know? Had your initial
(09:17):
GP been more curious, had the clinicians read the reports?
Is that something that you're left with, or is it
something else you feel?
S2 (09:24):
Oh, of course, of course I, I think this could
have been avoidable. Um, but I guess, uh, for me,
how I feel about it, it comes down to I
have a very strong Christian faith. And, um, you know,
I have to just trust that it was God's plan
for me that I. I didn't find out. I don't
(09:47):
know what God's plan for me, for the future is.
You know, um, I they when I initially saw the
oncologist last year, he said, you know, you might have.
I said, what happens if I have no treatment? And
he said, I said, how long am I going to live?
And he said, well, um, well, apparently he originally said
4 to 6 months, but I didn't hear him say that.
My husband heard him say that. He said, 12 months.
S1 (10:09):
Kate, I just want to turn to you because you've
received so many more responses from women who've experienced, you know,
misdiagnoses and delayed diagnoses and had their suffering dismissed since
we last spoke to you about this in December last year.
So just how many more responses have you received since then?
And are there particular tales, I guess, of medical misogyny
(10:31):
that have really stood out for you?
S3 (10:34):
So since we launched this series, we've had over 1800
responses from women sharing their experiences of medical misogyny and
more than 1500 of those said that there was some
element of misdiagnosis or delayed diagnosis, and some of the
most alarming of those cases were 60 accounts of women who,
(10:55):
like Jenny, had delayed cancer diagnoses, who were fobbed off
for a very long time, whose symptoms were put down to, frankly,
women's issues. A lot of the time, who's whose doctors
didn't explore further. We spoke to a one woman who
had a hard lump under her right breast, and her
(11:15):
GP repeatedly just refused to even touch it. And she
quipped that, you know, if that was a lump on
a penis, it would have been seen to. This woman
ended up having two aggressive forms of breast cancer.
S1 (11:26):
Okay. I have to I have to interject there. I
don't understand. A doctor not touching that. What was happening there?
S4 (11:32):
It's a good question.
S3 (11:33):
Sam, I don't know. I spoke to a few experts
in this area, and it's unfortunate that young women when
they present with symptoms of breast cancer. Doctors do often
overlook it because they think, well, you're not old enough
for screening programs yet, so it's very unlikely that you'll
have breast cancer. And so they send them on their way.
(11:53):
This woman was sent on her way five times before
she was investigated. I mean, I find these stories quite
hard to believe as, like you were a layperson because
I'm like, you're literally talking about reaching out an arm
over to your patient and asking for permission to feel
something that they're so concerned about that they've returned to
you five times, having already been dismissed by you four times. And,
(12:16):
you know, I do have to say that misdiagnosis and
delayed diagnosis happens to everyone. It's not just women, but
we we have mounting evidence now. So many research papers
coming from Australia and internationally showing that there are these
very clear, deep rooted themes coming through that we know
(12:37):
that women are more likely to be prescribed a sedative
when men are more likely to be prescribed painkillers in
some aspects.
S1 (12:44):
Well, this really brings us to what is partly the
heart of your multiple pieces that are part of this investigation,
which is where is this coming from? You know, because
one thing that really hit me in your piece is
that a lot of people think, oh, medical misogyny, this
is something that male doctors are are doing against female patients. And,
you know, but that's not often the case is my understanding.
(13:05):
So what is happening? Why is all of this happening?
S3 (13:08):
In a way, it would kind of be easier to
fix if that was the case, if this was just,
you know, a few male doctors doing bad things to
female patients. But no, the vast majority of healthcare practitioners,
we know they want to help patients. They're healers. That's
why they got into this gig. I mean, they're smart.
They could have gone and done, you know, anything really. But,
you know, there are certainly many cases in the 1800
(13:29):
responses where healthcare practitioners have acted atrociously and there's just
no getting around that. But when we're talking about medical
misogyny or some people prefer gender pay gap, gender bias,
healthcare misogyny, we're talking about an ingrained systemic discrimination or
subordination of women in healthcare, in medicine, and in research.
(13:52):
It's in the medical training where women are presumed to
be smaller men. It's in the way practitioners are taught
to ask questions that are usually suited for a typically
male response. It's baked into the scientific research that medicine
is built on, in which men are the default and
women are the aberrations when male is the default. We're
lumping everyone in there together, and we we're not teasing out, well,
(14:16):
what aspects of this prevention initiative, this drug, the symptoms
we're looking for are male and what aspects might be
different for other sexes, for other genders. And when we
include women and men in trials and we don't disaggregate that.
What we're doing is we're saying what we get out
(14:37):
of this trial is true for everyone, which is just
not the case. We really need to be able to unpick. Well, okay,
what about male biology affects this thing that we're researching?
What about female biology affects this thing we're researching? I mean,
this is much more than a bad doctor doing bad
things to women.
S1 (14:56):
One of the experts you spoke to made a really
interesting point, which is that normal physiological female changes premenstrual stress, pregnancy, perimenopause, menopause.
A lot of those actually mimic many of cancer symptoms.
That blew my mind. So and they're being missed as
a result, just as in Jenny's case. Right?
S3 (15:12):
Yeah, absolutely. I mean, cancer, when you boil it down,
is about some dramatic changes in your body. And when
you're a woman, you know that feeling all too well
throughout your life. You know, you've got prepubescents to through
to puberty, to your body preparing for, you know, that
fertile part of your life. You've got pregnancy, you've got postpartum,
you've got perimenopause, you've got menopause. Like all of these
(15:34):
phases involve some pretty dramatic changes. And unfortunately, things that
women go through that aren't to do with their normal
cycle of life are just being dismissed as this is
part of being a woman.
S1 (15:47):
And, Kate, tell us what's happening in terms of regulation
in this space, because I believe that our medical watchdog,
the Australian Health Practitioner Regulation Agency, otherwise known as Ahpra,
it's actually launching something of a probe right in this area.
So tell us about that.
S3 (16:01):
Yeah. They're launching what they're calling an intelligence gathering operation.
And what triggered this is they are telling me increasing
reports of gender bias in the healthcare system. So it's
in their early stages, but essentially what they're looking at
is how are these things presenting? They specifically mentioned women
being dismissed, women, women not being believed, women being told
(16:24):
it's all in their head. They specifically mentioned things like endometriosis,
chronic pain, delayed diagnosis. We'll see how it's going. There's
not a whole lot of regulation in this area. Another
thing is that the National Health and Medical Research Council
published a statement last year on sex, gender variations of
sex characteristics and sexual orientation in health and medical research.
(16:47):
And this statement strongly encourages researchers to consider these factors
at all stage of their research projects. So that's not
just in recruiting trial participants using male and female cell lines.
It's about study design, about disaggregating data, about how they interpret,
report and translate this information. But strongly encouraged means that
(17:07):
it's not a requirement to get government funding for these projects.
So there's still a fair ways to go there.
S1 (17:13):
And we're recording this at such an interesting time. We're
only a few weeks away from the federal election. Both
the government and the opposition are promising to boost Medicare services.
This is what they're pitching to voters. So what are
they proposing, and will it adequately address the problems that
we've been talking about.
S3 (17:29):
Yeah, they both have women's health packages. Ahead of the election,
both Labour and the coalition have made women's health a
priority in some form or another. Labour has also unveiled
an $8.5 billion plan to boost rebates for GP consultations
to make more bulk billable. Now, the problem is that
(17:52):
longer consultations have attracted a lower increase and we just
don't think it's good enough. So the Sydney Morning Herald
and The Age are backing calls for whoever wins the
election to increase funding so that GPS can have longer consultations,
which will benefit women, but also really anybody who have
complex health needs, because, you know, something that that really
(18:15):
has stuck with me over doing this is that this
does have a generational effect. Children of mothers who have
been dismissed or received delayed diagnoses, they're worried that it's
going to happen to them too.
S1 (18:27):
And, Jenny, I wanted to come back to you because
you made the decision to stop treatment last month to
spend more time with your family. So how difficult was
that decision?
S2 (18:37):
Uh, actually, it wasn't. It wasn't that hard. Um, uh,
my family had said to me all along, uh, don't
have treatment if you don't want to. Mum, we don't
want you to be sick. Um, I, I know that, uh,
this cancer is terminal. It's not. It's not a curable cancer.
And I've known that right from the start. Um, so
(18:58):
I thought I'd give it a try to see if
it would help. Sort of slow down. Uh, because I've
got Cushing's syndrome and the. The chemo was just making
me feel unwell, and I just thought that. What's the point?
I want quality of life. I want to spend time
with my family and my friends and, well, I have
the most amazing husband in the world who is so
(19:18):
supportive and and loving. I have, um, I have three children. Um,
my oldest daughter, um, Um, has two children and she's
pregnant with a third. So that makes me very sad,
because I'm not sure if I'll be here. Um, for
the birth of of of number three. Um, my next daughter. Uh,
so that was that's Sarah. My next daughter is, uh, 30. Um,
(19:39):
her name is Anna, and, uh, she lives, lives nearby.
So we see her quite regularly. She jogs past our
house and pops in, and, uh, um, and our youngest son, uh,
is Ben, and he's, um, he's married, and. Yeah, they
they all live in Sydney, so we get to see
them a lot and see the grandkids regularly. So it's lovely.
And I've got beautiful friends. I just, I've had a
(20:01):
very blessed life. And so, um, you know, I don't
want to be spend my last days being in despair, um,
about what I'm going to miss out on. To be honest,
I feel so blessed. I've. I've been really. Well, um,
to be honest, apart from the Cushing's symptoms, I feel
really well, you know, and, and so every day, I'm
(20:21):
thankful for the time that I have with my family and, um. Yeah, just,
you know, it wasn't too hard at all because, uh,
every day is precious, and, um. Yeah, a gift from God. So. Yeah.
S1 (20:34):
Well, that's incredible to hear, but doctors have told you,
I believe you've only got a few months to live.
Is that right?
S2 (20:40):
Uh, they don't know. To be honest, um, they can't
predict the the the how quickly the cancer's growing. So
every time I have a scan, um, they're quite positive. Oh, yes.
It's growing a bit. They don't. They don't tell me
the details and I could ask, but, um, they really,
they don't know. So, of course, I'm very sad about
(21:00):
the things that I won't get to see, but, um,
as I say, I have a Christian faith, and I
know that, um, my hope is to be going home,
to be in heaven with God. And, um, I just
want to sort of live each day and, I don't know,
enjoy the many blessings that I have been given because
I've had a fantastic life, I Life. I really have.
S1 (21:22):
Jenny. It really is such a privilege. Thank you so
much for sharing your story. And I just wanted to
finish by asking you, I guess, what do you want
women to know and what do you hope will change
in this area?
S2 (21:33):
The biggest thing is, listen, you know your body, yourself. And, um,
I think sometimes when you go to the doctor, they
when they're dismissing you, you second guess and say, oh,
maybe it is, you know, nothing. Maybe it's just me, blah, blah, blah, blah.
So I would say to women, if you feel like
there's something wrong, you've got to advocate for yourself. I've
learned that, you know, and maybe you need to be
(21:55):
the you need to tell the doctor, send me to this, um,
certain specialist. I mean, I, I was relying on my
doctor to have the wisdom to to send me to, like,
a general physician or somebody who could look at the
bigger picture. And if your GP isn't doing a good job,
change GPS. So I would say, yeah, advocate for yourself
and listen to your body. And you know, you know
(22:18):
best not the doctors. They don't know what's going on.
S1 (22:21):
Well, thank you so much, Jenny and Kate, for your time.
S3 (22:25):
Thanks, Sam.
S2 (22:26):
Thank you. Thanks, Sam.
S1 (22:33):
Today's episode of The Morning Edition was produced by Julia
Carcasole and Josh towers. Our executive producer is Tammy Mills.
Tom McKendrick is our head of audio. To listen to
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Our newsrooms are powered by subscriptions, so to support independent journalism,
(22:55):
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your inbox every morning. Links are in the show. Notes.
I'm Samantha Selinger. Morris. Thanks for listening.
From the newsrooms of the Sydney Morning Herald and The Age.
This is the morning edition. I'm Samantha Selinger Morris. It's Monday,
April 21st. Jenny Piper, a Sydney mother of three, started
asking her general practitioner about her bizarre symptoms in 2015.
(00:22):
What was up with the intense bruising up and down
her limbs and the excessive facial hair? And what about
the weight gain that she just couldn't budge no matter
what she tried? Menopause, said her GP. Stress again and again.
This is what she was told over eight years. When
Jenny would ask, what is wrong with me today? Health
(00:44):
editor Kate Aubusson on why doctors missed the signs that
women have cancer. And Jenny Piper on nearing the end
of her life after a misdiagnosis. Welcome to the podcast,
Kate and particularly Jenny. Now you're both here to discuss
(01:06):
some really shocking examples of misogyny in our healthcare system. But, Jenny,
you've got your own story to tell. And I was
wondering if you could just start by sharing with us
what symptoms you first began experiencing eight years ago. What
were they and what were you telling your doctor about
them at the time?
S2 (01:22):
Well, at the time when I started experiencing the symptoms,
it was probably about 2015 and I just didn't feel well.
I felt generally unwell. But also what was happening is
I was I was getting these marks on my arms
every time I bumped into something, it would be like
I'd be bleeding under the skin. So it wasn't a
classic bruise, like a browny bruise. It was this marks
under my arms. And, uh, um, also, I was starting
(01:46):
to sort of develop a little bit of facial hair
and moustache. Anyway, I was actually seeing, um, a different
GP at the time, and, um, she sort of put
me on hormone replacement. Thought it was menopause. It hurts.
You retired and so I changed to a GP. That
was closer to where I was living. Um, around that time.
And she was very good to start with. She, um,
(02:08):
you know, kept me on hormone replacement and things like that.
But as the years went by, the bleeding under my skin, um,
was getting probably worse. My hair started falling out. Um,
and I'd put on a lot of weight, and I
had tried diets. I went to dieticians. Um, I, I
tried everything. There are just a whole lot of vague
symptoms that they obviously didn't send any alarm bells to
(02:30):
my GP, and she just put everything down to lifestyle and,
you know, lose weight, um, get healthy, yada, yada.
S1 (02:38):
And so just to clarify, if we're talking like a
7 or 8 year period, even so, you might have
gone to the GP, what, like 12, 15 times in
that in that period. And in each in each one,
you kept repeating that you're having these symptoms and they're
not going away. Is that right?
S2 (02:51):
Uh, yeah, I would always she'd always say, how are you?
And I say, oh, I'm so tired all the time. And, um,
I mean, I probably just gave up complaining about my
weight because she kind of would say, oh, well, see
a dietitian do this, but I used to exercise all
the time. I watched what I, what I ate, and
I still couldn't lose weight. And I actually think she
didn't believe me. She didn't believe that I was trying
(03:12):
to lose weight. I think she just thought, um, I
don't know, middle aged woman, um, you know, having a
few too many wines, I don't know. Well, I think
by the end, I just, I just went because I
had to get my prescriptions. To be honest, I was
sick of being dismissed by her. And actually, we ended
up having quite a big argument because I just said
(03:32):
to her, look, there's something wrong with me. You know,
you need to send me to a specialist or something.
She said, well, it's up to you to ask for
a specialist. And I said, I beg your pardon? She said, well,
you know, we'll investigate it further when you come back
from overseas. She also said to me, I think, in
the same conversation over the phone that, uh, don't eat
too much pasta while you're in Italy. And I said,
I beg your pardon? And she said, well, you know
(03:54):
how you worry about your weight.
S1 (03:56):
And then in June 2022, you had a completely unrelated
surgery to treat varicose veins, but doctors actually noticed something
in a CT scan. So what did they find?
S2 (04:07):
So, uh, during the surgery, I had breathing issues, and so, um,
I had a whole lot of tests while I was
in the hospital. And one of the tests they ran
was a CT scan. And, um, as it turns out,
I didn't know at the time. But as it turns out,
on the report, um, it said that there was a
three centimeter adenoma on my adrenal gland, which are required
(04:29):
sort of further investigation.
S1 (04:31):
And that's a type of benign tumor. Is that right?
S2 (04:33):
Yes. Well, it could it could be benign, but, um, uh, yeah.
At the time, the doctors, several doctors got that report. Um,
they didn't read the report properly. I didn't know about
the report. Uh, until fast forward to January, December 2023,
when I was seeing the surgeon who was going to
remove my adrenal gland because of the tumor. He mentioned that, oh,
(04:55):
you would have had a CT scan. And so I
went back and, um, had a look. That's when I
found out that it was there. So it was three
centimetres in June 2022. Um, and when I had the
scans in November 23rd, it had grown to seven centimetres. So.
S1 (05:11):
So just to be clear, you had the CT scan
in June of 2022, and doctors actually did find a
three centimeter suspected tumor. But and it was in the report.
But you're treating clinicians just didn't read that. They only
read the conclusion. And so you actually didn't find out
that you had this tumor until 18 months later, by
which time you had another CT scan. And it had
(05:33):
shown that that tumor that was originally three centimeters, now
it's seven centimetres. It's cancerous. Is that right?
S2 (05:38):
Yes. So it was cancerous. They took out my adrenal
gland and um, uh, my so that was in January 24th.
They took out my adrenal gland. I had radiation treatment
for five weeks, um, to, uh, kill any cells that
would have been around localized. And I had another scan
in October, uh, 24. And, uh, there were metastases in
(06:01):
my liver and too many to, uh, operate.
S1 (06:04):
And I have to ask you, so what was your
response when you find out, actually, doctors had known about
this tumor and they just didn't tell me. And now
it's grown and now it's cancerous. What was your feeling?
S2 (06:15):
Well, they didn't know because they didn't actually read the report.
They've only found out, um, since we I did make
a complaint to the health care, uh, commissioner about them. Um. Oh,
I guess I was angry that. How could this have
been missed? Um, yeah. Yeah, I was probably. I have
(06:36):
to say, I was devastated, really, uh, to find out. But,
you know, at that stage, um, you know, I was
when I found out it was pre my, my surgery,
so I was hopeful. Oh, well, they'll take the adrenal
gland out. That'll be it. And, you know, um, the
cancer I've got is is very, very rare. It's 1
in 1,000,000 people. And so, uh, don't Google it because
(06:57):
the odds are terrible. But I thought I'd be the
one who would beat the odds. I'd have the surgery,
have the radiation, and go on to live, you know,
a cancer free life.
S1 (07:07):
Kate, I just want to turn to you for a moment.
I really want to ask you, you know, because you
have reported so much in this space that you know
what shocked you most about Jenny's story?
S3 (07:16):
Jenny's case should be shocking. It should, unfortunately, just doesn't
shock me anymore. So many of the aspects of Jenny's
case are mimicked in the stories that other women have
told us over the last few weeks and months. And
I guess what's particularly concerning is the degree to which
these women go to, to, to be heard, to feel
(07:37):
like they're being heard and feel like they're being believed.
And and some in Jenny's, like Jenny did at some
stages just thought, yeah, well maybe I am complaining too much.
Maybe this is just what it's like. Other women just
had their pain dismissed for months, as Jenny did for
years as Jenny did. And you know, I do understand
(07:57):
that part of a GP's role and I should say,
not all of these cases relate to GPS, but part
of a GP's role is to keep the healthcare system healthy.
And part of that is saying to patients, well, you know,
let's wait and see. Let's I'm not sure you need
to go for a scan yet. I'm not sure you
need to see a specialist yet. Let's let's wait and
see because that keeps our system ticking over. You know,
(08:19):
wait lists don't don't get longer and longer. Medicare doesn't
get overloaded. But you got to ask yourself, when these
women are going back so many times with these unremitting,
unexplained symptoms, is it time to investigate further? Or as
Jenny said, time to time to be a little bit
more curious to to live in the uncertainty with these
(08:40):
women instead of dismissing them, instead of being like, oh, well,
you know, pain is women's lot in life. You're menopausal.
You're emotional. You're. Some women would call it hysterical. Some
women were melodramatic.
S1 (08:57):
We'll be right back. And, Jenny, I just wanted to
come back to you and ask you how you feel
about specifically. I imagine, you know, when I read your story,
I thought as a layperson, okay, it seems like this
was potentially an avoidable outcome, you know? Had your initial
(09:17):
GP been more curious, had the clinicians read the reports?
Is that something that you're left with, or is it
something else you feel?
S2 (09:24):
Oh, of course, of course I, I think this could
have been avoidable. Um, but I guess, uh, for me,
how I feel about it, it comes down to I
have a very strong Christian faith. And, um, you know,
I have to just trust that it was God's plan
for me that I. I didn't find out. I don't
(09:47):
know what God's plan for me, for the future is.
You know, um, I they when I initially saw the
oncologist last year, he said, you know, you might have.
I said, what happens if I have no treatment? And
he said, I said, how long am I going to live?
And he said, well, um, well, apparently he originally said
4 to 6 months, but I didn't hear him say that.
My husband heard him say that. He said, 12 months.
S1 (10:09):
Kate, I just want to turn to you because you've
received so many more responses from women who've experienced, you know,
misdiagnoses and delayed diagnoses and had their suffering dismissed since
we last spoke to you about this in December last year.
So just how many more responses have you received since then?
And are there particular tales, I guess, of medical misogyny
(10:31):
that have really stood out for you?
S3 (10:34):
So since we launched this series, we've had over 1800
responses from women sharing their experiences of medical misogyny and
more than 1500 of those said that there was some
element of misdiagnosis or delayed diagnosis, and some of the
most alarming of those cases were 60 accounts of women who,
(10:55):
like Jenny, had delayed cancer diagnoses, who were fobbed off
for a very long time, whose symptoms were put down to, frankly,
women's issues. A lot of the time, who's whose doctors
didn't explore further. We spoke to a one woman who
had a hard lump under her right breast, and her
(11:15):
GP repeatedly just refused to even touch it. And she
quipped that, you know, if that was a lump on
a penis, it would have been seen to. This woman
ended up having two aggressive forms of breast cancer.
S1 (11:26):
Okay. I have to I have to interject there. I
don't understand. A doctor not touching that. What was happening there?
S4 (11:32):
It's a good question.
S3 (11:33):
Sam, I don't know. I spoke to a few experts
in this area, and it's unfortunate that young women when
they present with symptoms of breast cancer. Doctors do often
overlook it because they think, well, you're not old enough
for screening programs yet, so it's very unlikely that you'll
have breast cancer. And so they send them on their way.
(11:53):
This woman was sent on her way five times before
she was investigated. I mean, I find these stories quite
hard to believe as, like you were a layperson because
I'm like, you're literally talking about reaching out an arm
over to your patient and asking for permission to feel
something that they're so concerned about that they've returned to
you five times, having already been dismissed by you four times. And,
(12:16):
you know, I do have to say that misdiagnosis and
delayed diagnosis happens to everyone. It's not just women, but
we we have mounting evidence now. So many research papers
coming from Australia and internationally showing that there are these
very clear, deep rooted themes coming through that we know
(12:37):
that women are more likely to be prescribed a sedative
when men are more likely to be prescribed painkillers in
some aspects.
S1 (12:44):
Well, this really brings us to what is partly the
heart of your multiple pieces that are part of this investigation,
which is where is this coming from? You know, because
one thing that really hit me in your piece is
that a lot of people think, oh, medical misogyny, this
is something that male doctors are are doing against female patients. And,
you know, but that's not often the case is my understanding.
(13:05):
So what is happening? Why is all of this happening?
S3 (13:08):
In a way, it would kind of be easier to
fix if that was the case, if this was just,
you know, a few male doctors doing bad things to
female patients. But no, the vast majority of healthcare practitioners,
we know they want to help patients. They're healers. That's
why they got into this gig. I mean, they're smart.
They could have gone and done, you know, anything really. But,
you know, there are certainly many cases in the 1800
(13:29):
responses where healthcare practitioners have acted atrociously and there's just
no getting around that. But when we're talking about medical
misogyny or some people prefer gender pay gap, gender bias,
healthcare misogyny, we're talking about an ingrained systemic discrimination or
subordination of women in healthcare, in medicine, and in research.
(13:52):
It's in the medical training where women are presumed to
be smaller men. It's in the way practitioners are taught
to ask questions that are usually suited for a typically
male response. It's baked into the scientific research that medicine
is built on, in which men are the default and
women are the aberrations when male is the default. We're
lumping everyone in there together, and we we're not teasing out, well,
(14:16):
what aspects of this prevention initiative, this drug, the symptoms
we're looking for are male and what aspects might be
different for other sexes, for other genders. And when we
include women and men in trials and we don't disaggregate that.
What we're doing is we're saying what we get out
(14:37):
of this trial is true for everyone, which is just
not the case. We really need to be able to unpick. Well, okay,
what about male biology affects this thing that we're researching?
What about female biology affects this thing we're researching? I mean,
this is much more than a bad doctor doing bad
things to women.
S1 (14:56):
One of the experts you spoke to made a really
interesting point, which is that normal physiological female changes premenstrual stress, pregnancy, perimenopause, menopause.
A lot of those actually mimic many of cancer symptoms.
That blew my mind. So and they're being missed as
a result, just as in Jenny's case. Right?
S3 (15:12):
Yeah, absolutely. I mean, cancer, when you boil it down,
is about some dramatic changes in your body. And when
you're a woman, you know that feeling all too well
throughout your life. You know, you've got prepubescents to through
to puberty, to your body preparing for, you know, that
fertile part of your life. You've got pregnancy, you've got postpartum,
you've got perimenopause, you've got menopause. Like all of these
(15:34):
phases involve some pretty dramatic changes. And unfortunately, things that
women go through that aren't to do with their normal
cycle of life are just being dismissed as this is
part of being a woman.
S1 (15:47):
And, Kate, tell us what's happening in terms of regulation
in this space, because I believe that our medical watchdog,
the Australian Health Practitioner Regulation Agency, otherwise known as Ahpra,
it's actually launching something of a probe right in this area.
So tell us about that.
S3 (16:01):
Yeah. They're launching what they're calling an intelligence gathering operation.
And what triggered this is they are telling me increasing
reports of gender bias in the healthcare system. So it's
in their early stages, but essentially what they're looking at
is how are these things presenting? They specifically mentioned women
being dismissed, women, women not being believed, women being told
(16:24):
it's all in their head. They specifically mentioned things like endometriosis,
chronic pain, delayed diagnosis. We'll see how it's going. There's
not a whole lot of regulation in this area. Another
thing is that the National Health and Medical Research Council
published a statement last year on sex, gender variations of
sex characteristics and sexual orientation in health and medical research.
(16:47):
And this statement strongly encourages researchers to consider these factors
at all stage of their research projects. So that's not
just in recruiting trial participants using male and female cell lines.
It's about study design, about disaggregating data, about how they interpret,
report and translate this information. But strongly encouraged means that
(17:07):
it's not a requirement to get government funding for these projects.
So there's still a fair ways to go there.
S1 (17:13):
And we're recording this at such an interesting time. We're
only a few weeks away from the federal election. Both
the government and the opposition are promising to boost Medicare services.
This is what they're pitching to voters. So what are
they proposing, and will it adequately address the problems that
we've been talking about.
S3 (17:29):
Yeah, they both have women's health packages. Ahead of the election,
both Labour and the coalition have made women's health a
priority in some form or another. Labour has also unveiled
an $8.5 billion plan to boost rebates for GP consultations
to make more bulk billable. Now, the problem is that
(17:52):
longer consultations have attracted a lower increase and we just
don't think it's good enough. So the Sydney Morning Herald
and The Age are backing calls for whoever wins the
election to increase funding so that GPS can have longer consultations,
which will benefit women, but also really anybody who have
complex health needs, because, you know, something that that really
(18:15):
has stuck with me over doing this is that this
does have a generational effect. Children of mothers who have
been dismissed or received delayed diagnoses, they're worried that it's
going to happen to them too.
S1 (18:27):
And, Jenny, I wanted to come back to you because
you made the decision to stop treatment last month to
spend more time with your family. So how difficult was
that decision?
S2 (18:37):
Uh, actually, it wasn't. It wasn't that hard. Um, uh,
my family had said to me all along, uh, don't
have treatment if you don't want to. Mum, we don't
want you to be sick. Um, I, I know that, uh,
this cancer is terminal. It's not. It's not a curable cancer.
And I've known that right from the start. Um, so
(18:58):
I thought I'd give it a try to see if
it would help. Sort of slow down. Uh, because I've
got Cushing's syndrome and the. The chemo was just making
me feel unwell, and I just thought that. What's the point?
I want quality of life. I want to spend time
with my family and my friends and, well, I have
the most amazing husband in the world who is so
(19:18):
supportive and and loving. I have, um, I have three children. Um,
my oldest daughter, um, Um, has two children and she's
pregnant with a third. So that makes me very sad,
because I'm not sure if I'll be here. Um, for
the birth of of of number three. Um, my next daughter. Uh,
so that was that's Sarah. My next daughter is, uh, 30. Um,
(19:39):
her name is Anna, and, uh, she lives, lives nearby.
So we see her quite regularly. She jogs past our
house and pops in, and, uh, um, and our youngest son, uh,
is Ben, and he's, um, he's married, and. Yeah, they
they all live in Sydney, so we get to see
them a lot and see the grandkids regularly. So it's lovely.
And I've got beautiful friends. I just, I've had a
(20:01):
very blessed life. And so, um, you know, I don't
want to be spend my last days being in despair, um,
about what I'm going to miss out on. To be honest,
I feel so blessed. I've. I've been really. Well, um,
to be honest, apart from the Cushing's symptoms, I feel
really well, you know, and, and so every day, I'm
(20:21):
thankful for the time that I have with my family and, um. Yeah, just,
you know, it wasn't too hard at all because, uh,
every day is precious, and, um. Yeah, a gift from God. So. Yeah.
S1 (20:34):
Well, that's incredible to hear, but doctors have told you,
I believe you've only got a few months to live.
Is that right?
S2 (20:40):
Uh, they don't know. To be honest, um, they can't
predict the the the how quickly the cancer's growing. So
every time I have a scan, um, they're quite positive. Oh, yes.
It's growing a bit. They don't. They don't tell me
the details and I could ask, but, um, they really,
they don't know. So, of course, I'm very sad about
(21:00):
the things that I won't get to see, but, um,
as I say, I have a Christian faith, and I
know that, um, my hope is to be going home,
to be in heaven with God. And, um, I just
want to sort of live each day and, I don't know,
enjoy the many blessings that I have been given because
I've had a fantastic life, I Life. I really have.
S1 (21:22):
Jenny. It really is such a privilege. Thank you so
much for sharing your story. And I just wanted to
finish by asking you, I guess, what do you want
women to know and what do you hope will change
in this area?
S2 (21:33):
The biggest thing is, listen, you know your body, yourself. And, um,
I think sometimes when you go to the doctor, they
when they're dismissing you, you second guess and say, oh,
maybe it is, you know, nothing. Maybe it's just me, blah, blah, blah, blah.
So I would say to women, if you feel like
there's something wrong, you've got to advocate for yourself. I've
learned that, you know, and maybe you need to be
(21:55):
the you need to tell the doctor, send me to this, um,
certain specialist. I mean, I, I was relying on my
doctor to have the wisdom to to send me to, like,
a general physician or somebody who could look at the
bigger picture. And if your GP isn't doing a good job,
change GPS. So I would say, yeah, advocate for yourself
and listen to your body. And you know, you know
(22:18):
best not the doctors. They don't know what's going on.
S1 (22:21):
Well, thank you so much, Jenny and Kate, for your time.
S3 (22:25):
Thanks, Sam.
S2 (22:26):
Thank you. Thanks, Sam.
S1 (22:33):
Today's episode of The Morning Edition was produced by Julia
Carcasole and Josh towers. Our executive producer is Tammy Mills.
Tom McKendrick is our head of audio. To listen to
our episodes as soon as they drop, follow the Morning
Edition on Apple, Spotify, or wherever you listen to podcasts.
Our newsrooms are powered by subscriptions, so to support independent journalism,
(22:55):
visit The Age or smh.com.au. Subscribe and to stay up
to date, sign up to our Morning Edition newsletter to
receive a summary of the day's most important news in
your inbox every morning. Links are in the show. Notes.
I'm Samantha Selinger. Morris. Thanks for listening.
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