Cure Our Ovarian Cancer with Jane Ludemann
- helsbels7
- Feb 22, 2022
- 1 min read
What would motivate someone to start their own charity in the midst of a shock cancer diagnosis? Jane Ludemann was in her early 30s when she was diagnosed with low-grade serous ovarian cancer in 2017. A rarer form of ovarian cancer, patients are usually given a life expectancy between 5-15yrs and is more common in younger women.
Jane started the charity Cure Our Ovarian Cancer when she realised how little research or funding there was for her type of ovarian cancer. She works tirelessly to advocate and raise awareness.
Jane had experienced niggling health problems for a number of years before she was diagnosed. Her story is all too familiar for younger people - she was dismissed a number of times before finally getting her diagnosis.
We discuss Jane's story and answer these questions:
What are the symptoms of ovarian cancer?
What is the life expectancy of someone with ovarian cancer?
How to advocate for yourself in the doctor's office
How much funding does ovarian cancer receive?
Why is ovarian cancer called 'the silent disease?'
...and more!
Jane's links:
Helen's links:
The C Word Radio is a podcast that asks WTF does young cancer survivorship mean. If you got cancer and all you got was a darker sense of humor and PTSD join host, Helen King, and regular guests, for raw and at times inappropriate conversations about life after a cancer diagnosis.
Episode Transcript
Cure Our Ovarian Cancer with Jane Ludemann
===
[00:00:00] Jane: I guess how you say after the cancer diagnosis and it is really the diagnosis because I'm still, I think I still have cancer and I take treatment every day and all of those things, and it's probably going to be part of my life until I'm not breathing. but I think, yeah, it is really interesting how that goes.
[00:00:19] And for me, Part of how I've found control has been through charity work. But I think it's a really double edged sword. If someone asked, had been doing this work, if someone else was going to do it, I would be doing something different and I would be happy in the areas that I guess entrust me.
[00:00:38] I just wrote an article for a GP magazine about viewing cancer, for example. And I quite like those things. I haven't. Academic health professional way of writing, trying to come up with social media posts and get people to throw NACE and fundraise and running a websites. I did a maths degree before I did optometry and deliberately didn't do any computer science [00:01:00] papers, even though that's the way to make yourself unemployable.
[00:01:04] and so yeah, all of those things, I don't think I'd be, or I'd be doing it, but. I wouldn't be the person leading if I had a choice because it is really hard. And I've spoken to AMA people who've seen at cancer charities when they've had people pass away from cancer or head,cancer experience have said that actually, you probably shouldn't be doing this because it's a huge burden when you're also living with this disease and you should just be getting on and living your life.
[00:01:30] Jane: But I think for me, I just can't do that knowing. I could be making a difference and that what I'm doing is no one else doing this anywhere. And so that's, it is, it's quite a heavy thing to carry around in the shoulders. But I think what you're saying, yeah, my life is so different to what it used to be.
[00:01:50] And I think a lot of psychology, I was someone who never had any mental health issues before, and I've probably to be honest, [00:02:00] Being, okay. I think the struggles that I had head at pretty proportional to, and it sets you quite, the bit that I find the most hard and start crying when I realized that.
[00:02:12] I'm one of these people that I'm talking about in a very academic sense, but, it's definitely a lot of psychology, was really helpful because it is a really challenging thing. And you realize, I think we will hit the thought patterns and some people just have really healthy thought patterns, but I think a lot of us had these thought patterns that maybe aren't that healthy, but because everything's going okay, doesn't really, it doesn't really matter.
[00:02:37] Jane: And then when things. going, wow. Those things can really influence it. And so I don't know what your experiences with this, but I suddenly, I saw a lot of different psychologists before I found one that I really clicked with. And it was actually a student who was training and she was amazing as she's listening to this, I'm very grateful for you.
[00:02:57] and just learning how to be really. [00:03:00] For giving to yourself. you do lose friends, but on the most part, like most of your friends understand that you're still you, but it's that outer talk. And it's those standards that you hold yourself to that can really.
[00:03:14] Jane: Get you down and just moaning to let go of staff in this, there is a really challenging thing to do. Isn't it? for example, I was really transparent, really fast and active like you, and it's really hard then to go into something that you used to do and for it to be so much harder and not just be really resentful.
[00:03:34] And it's taken me a long time to get in that mindset where I'm just really grateful that I'm out. Doing stuff, but it's so hard, isn't it? Because it's also like those societal expectations. And for me, I guess I'm still living with this cancer, but I feel like some people were like, how can you still have cancer?
[00:03:50] like sure. You'd be, if you still had cancer or aren't you. Okay. And that's a really hard concept, particularly because of my type of cancer. It's a bit different [00:04:00] to other cancers. You know, we don't get this five-year post-diagnosis if you know your cancer's not growing, you're all fine because most women's cancer does come back, but it takes a bit longer than five years, but then yeah, you've lived with cancer and hopefully your cancer will never come back, but you still have all these after effects that you have to live with.
[00:04:19] Jane: And yeah, the societal narrative re. Brushes over those, doesn't it. So it really has to be an internal thing that we find and that we know. And B yeah, I feel like before the skills that I've learnt from psychology. It would have been amazing if I had known them in my twenties. I think I would've been so much more self confident and assured, and just with that, but yeah, it has to come within from within doesn't it, but it is, it's hugely challenging.
[00:04:48] Helen: I feel like for me,what's happened is that it's forcing me to deal with all the other crap. That was the, oh my. Oh, the other stuff, like I, I've done a lot of grief [00:05:00] work in the past year. which has real, it's so uncomfortable because I don't want to feel feelings. Thanks. I want to, I don't want my kid to feel like a cotton bowl, that sort of stuff.
[00:05:11] yeah, I think my experience has been a little bit similar where it open-ended a lot of things like debt health, a lot of help and also. Putting a lot of energy into yeah. Changing my mindset, changing that record in my head, changing my expectations. Cause it's so hard when your body no longer works in the way that it used to and that you look different and that, you know, things are different.
[00:05:38] Helen: Yeah, it's really, really challenging. And you know, one of my guests earlier in the month, Mandy, who you know, was diagnosed with ovarian cancer. And their thirties as well. actually, no new, late twenties. And she talks about that too, that, you know, I'm not getting over it. I'm not over it.
[00:05:56] I carry it around with me. It gets easier to [00:06:00] carry, but you don't just get over it.
[00:06:05] which I think is something that most people don't understand. It's not like this thing that has easily sort of just moved past it forces you to really, yeah. Confront a lot of things that you don't think you're going to be confronting.
[00:06:24] Jane: Yeah, it's honestly so true. And I think as humans, we really are, we don't deal well with uncomfortable stuff. And I guess that's partly why, with the pandemic that is really hard for people because they're all of a sudden, you can't run away from it. You can't stop thinking about it.
[00:06:38] And it's like a bit of the skills you've had to learn with cancer. Isn't it? how to. Life with this really uncomfortable kind of monster in the room and still function. and yeah, it really, I think probably is a quite highly driven person and for you as well. But his, I have gained this [00:07:00] whole appreciation for people who have just always lived their life happy with how it is.
[00:07:05] I think it's a huge skill to be. To be happy with what you have because our society really pushes people to have, the better job, the better qualification, the more money, the more stuff, the but actually being happy with what you have and knowing that sometimes less more, and this isn't a discussion on that whole cancer is better and has made my life better because I hate those taglines, which are those inspiration kind of narratives, which are rubbish.
[00:07:36] But it's about, I have learned that sometimes, just sitting still and listening and watching the clouds, you know, that is actually a productive. Whereas in my prior life, I would have been like, ah, it's a bit of a waste of time or something you have to just be go. Yeah. Yeah.
[00:07:55] I agree.
[00:07:55] Helen: And I think we S we've said this to each other before they actually, and I've said it many [00:08:00] times that. I don't. Yeah. I don't see my cancer as a gift and I don't think I'm really glad it happened because it's, you know, all these things have happened. You know, I love that I have a podcast and all these other things, but I think if this hadn't happened, like I, you know, life would have been whatever life.
[00:08:20] Was going to be without a cancer diagnosis. And so I think for me as someone who is not naturally a really positive person, it's a lot of digging deep to be like you can get through today. It's okay. Yeah. It's okay. Actually, if the only thing you have achieved today is you've got up, you've walked your dogs and your kind of,doing the best that you can.
[00:08:41] That's actually okay. At
[00:08:47] Jane: because the, a
[00:08:47] Helen: pandemic, we can't just go off to India and have an eat, pray, love moment.
[00:08:55] We're here . Jane and I had a conversation a week or so ago, and you know, I've [00:09:00] followed you on social media. A bit more about what you do efficacy has been a really big part of your process and of your experience. as someone who's been diagnosed with cancer, and I'd really love to understand when was that moment where you thought so, I need to start something.
[00:09:19] Jane: Yeah,that's a really good question, Helen. And I think so my background, I, which is probably helpful to understand for how I came to this, but there's not many people I guess, go through this cancer experience and then decide to set up an entire charity and flogged themselves to death, trying to get these massive changes, but it seemed actually.
[00:09:42] I did a science degree and the University of Otago and optometry in Auckland. And I worked in both hospitals and private practice in New Zealand and also over in Canada. And so I had this kind of science health professional background. So [00:10:00] when I was diagnosed with ovarian cancer, it came as a shock.
[00:10:03] And I suppose. The natural thing for me to do. I had a friend working at the university, and so I said, can I borrow you all at university login? And I logged into the library and got all the academic articles and read everything that I could, and to start with the thing that really hit me was just how long I'd had symptoms and how hard it was to be diagnosed.
[00:10:30] And I was reading all these articles. And so I guess, you know, you fool my assumptions based on what you know, what you don't know about viewing cancer, that it must be something that's really rare and doesn't happen very often. And it's just like super bad luck. and then I was reading all these academic literature articles.
[00:10:51] How I actually had eight out of 10 of the characteristic symptoms. It was the fifth, most common cause of female cancer death in New [00:11:00] Zealand. And you're just like, what, how did no one get this? And the more you lose. The more outrageous it gets. And I think when I was, and so I started down that weakness track because of that.
[00:11:14] But then I also had this other sideline that a few months later, I guess I was putting my energies into that. And just trying to process this crazy life altering thing. and I guess, the whole world is moving and you're just trying to learn how to stand up straight. But I just, yeah, I just couldn't really believe it.
[00:11:32] And the. I. I guess when I was diagnosed, because that, cause that's what your doctors do. They've just delivered this absolutely horrendous news. And it's all about trying to find the bright side and wow. You're going to live for, a long time. We don't want to give you a prognosis though. I have a lovely medical oncologist.
[00:11:54] Who's a bit more. Forthright who, who did, was willing to give me some figures and [00:12:00] numbers on that. and there's lots of research happening,something could change and in the time we don't know what's going to happen. And so I was just like, oh yeah. Okay. And while I was looking at all this, the stuff around symptoms and diagnosis, I signed up to, some scientific alerts.
[00:12:16] So you can with the main. Juvenile databases where I guess there. like libraries for research articles, all the different journals that get collated in one spot and they can let you know when new stuff's being published. And so I signed up and that was all right in a few months. And then I was like, let's just set this up wrong because I was getting these no new papers published on my cancer and one new paper published.
[00:12:44] And I also still had all my optometry one. So I was getting. Duty papers on shortsightedness and a hundred papers on glaucoma and these kinds of things. And so I went in and I searched just for one year and [00:13:00] was just like,
[00:13:04] that's bad. That's really bad because there were 20 papers in an entire year. And that's that kind of rate is. The kind of slow progress where, if that's the right things are going then in 20, 30 years time, patients are still going to be receiving this news and not have research advances because, there isn't much, and most of it wasn't novel research either.
[00:13:29] It was reviews where people basically write about the research that's happened in the past and put it all together. So I suppose I had just this kind of reckoning that actually these two things. Really bad. And I think once I'd seen that, I just couldn't unsee it. And to know that nothing really had happened for decades and, 30 years ago, varying hits was in this exact same situation.
[00:13:58] And so to be like, [00:14:00] I find a setback knowing this and don't do anything, is anything going to change? and so I think that's really, what has driven that whole process? it's definitely, it's just crazy. Honestly, you feel like you're in that, that storybook, the emperor has no clothing because the more you learn, it's just so outrageous that you were like, how can this be true?
[00:14:22] Surely it's not true stuff. Like somewhere. Did a research study. And part of the issue is we don't actually have a lot of data on ovarian cancer because it hasn't been studied much. But what we do have is it's just crazy that someone did a research study looking at, research fund allocation. And for example, the national cancer Institute in the U S I think it's the largest government funder of research in the world.
[00:14:50] They found that, and they compared apples for apples with this. So they looked at. Total years of life lost from [00:15:00] Kansas and the us. And then compared that matter of research funding for it and ovarian cancer got 18 times less funding than prostate cancer. that number just seems so huge.
[00:15:13] It's so hard to conceptualize because we're used to thinking in percentage terms they're 20 or 30% worse, like that's quite bad, but actually this is like 1800% lease funds. Which, you know, that's, it's so huge that you tell people that, and they're like, surely it can't be that bad. that, that can't be true because it's.
[00:15:41] That crazy. And that's why according to cancer research UK, you know, in the 1970s, oVarian and prostate cancer, survival was almost the same, but you have all these funding decisions because governments and mostly mean, and there's this stigma around talking about ovaries [00:16:00] in public and most research. And at that stage when mail and most doctors, and that kind of guided the way that this funding and the research decisions and the people on the committees deciding it, where they put their funding.
[00:16:13] And so you have a situation where you have two cancers with similar salon, five or rights, and. Now like prostate cancers, more than dabble. And when you look at stage, so you'll know. Wow, but I guess for any listeners who don't, so stage one is the earliest stage of ovarian cancer. when it's the smallest and stage four is when it has spread the food.
[00:16:35] So there are four stages. Most of you are in cancers, diagnosed at stage three, stage three, ovarian cancer, survival. 27% stage three prostate cancer survival rate today for five years is 96%, And that's what happens when you allocate resources to one cancer and not to the other one.
[00:16:57] which, yeah, it's just crazy, [00:17:00] honestly. and the. You know, most women with ovarian cancer have symptoms. They have a really hard time getting doctors to recognize it and diagnose it. I had eight out of 10 characteristics symptoms, but 25 years ago, if I'd gone to my guiding oncologist and said that, I had all these symptoms and they were my cancer, they would have said.
[00:17:21] Jane: Completely unrelated. You've just got these other random health conditions as well because a Varian cancer doesn't have symptoms, particularly not, years before you get it. And that's not a thing. And there wasn't actually any research or evidence to support that view, but it got copied into textbooks after textbooks and taught throughout medical school.
[00:17:40] And there are still, I live in and there are still medical school textbooks in the attacker university medical lab. That published that crap and it took until 2000 for this young specialist and the states who was at a conference where there were women with ovarian cancer, who got up and had asked a [00:18:00] speaker, and what advice would you give to people about what they can watch out for?
[00:18:04] And they were like, there's nothing, it's just a silent disease. And they got really upset and she was. And the audience thinking, oh goodness, I'm glad that wasn't me. I would've said the same thing because right through, and she, I don't know, she studied it maybe habit or let some very good schools and had very good training.
[00:18:24] and she got talking to them afterwards and they were just like, why won't anyone listen to us and believe us? And she. She said, well, you know, the currency you need to speak in is research. So we need to study and she did the study and the ridiculous thing that one of the cheapest studies to run. There was an, it was before the engineer. It was a really late nineties. And so there was a newsletter that went out to woman with ovarian cancer, that header, it had a suit violation of about 1500 people. And so they printed off the survey and put it in the air. couple of hundred dollars in [00:19:00] printing costs and got the results back.
[00:19:02] And lo and behold, most women experienced. For a really long time before they were diagnosed. And most women were initially misdiagnosed before they were told they had a varying cancer and, it's just crazy that wasn't listened to until 2000 and that even today, We don't have figures for New Zealand, but the UK, for example, it's still something like off the top of my head. I think 70% of doctors who, who think that it doesn't have symptoms in the early stages when, certainly not everyone hits symptoms and the early stages, but people can, and people do. And you really create a self fulfilling prophecy where you saying, no, that's not a Varian cancer and we're not going to test until it's really.
[00:19:51] Light. And then of course the cancer's really late because you have you seed, you've put this person off for months or years before testing them. [00:20:00] And and then they're like, oh, and now it's advanced. So of course it doesn't have symptoms. which you know, is it's just crazy.
[00:20:06] but it's taking so long for that research to filter through. And there is, there's a lot more research and a lot more people who had done studies that have completely supported them. Yeah. Yeah, but it, yeah, honestly, it's just, it's honestly
[00:20:25] Helen: so crazy. Cause even if you think I'm a layman and so I don't, I'm not a doctor or a researcher, but I think if you have a tumor on your ovary, which, does stuff every month for most people, of course, it's going to cause some.
[00:20:41] there's something going to happen and there, and it talk us through what those symptoms are, because I think a lot of the sort of characteristics or symptoms are things that women especially are, just mean to put up with. Yeah,
[00:20:57] Jane: you, yeah, you've got their a [00:21:00] hundred percent and that's where people go to their doctors and they told you, look, this is nothing serious.
[00:21:04] This isn't, this is just something. And I think I found that hard as an optometrist because unlike if there's, if someone presents with something and you know, most of the time it's something that's not harmless, but there's this chance that they're going to go blind. And I had this really easy, cheap safety.
[00:21:21] Yeah. I'm going to do it on the patient. but with the doing cancer, that doesn't really happen enough. And there are certainly some really good doctors out there, but for the most part, the standard of care that people receive it is pretty poor. And it's not, we don't have good. Good systems in place and good standardization of care.
[00:21:45] So your ovaries and for people who aren't aware. So I guess thinking about the gynecological tract and so the base of it, you've got your vulva and then the vagina is the canal. Then you've got your cervix, which [00:22:00] is at the bottom of the uterus and the new uterus and goes up and people who've had period pain will be quite aware and then the ovaries at the top on the size.
[00:22:12] And so the attached by some ligaments and, and also here. I don't believe they're directly connected to the floating true, but they hit these fingers that sort of attach it and. The ovaries, quite close to your bladder and your bounce. So those are common symptoms that people experience.
[00:22:34] so anyone over 50 who gets new onset irritable bowel syndrome, that's meant to be a red flag with a, with a. For ovarian cancer, doesn't always happen, should always be considered in younger woman too, because one and eight women are under the age of 45. When they're diagnosed. I was 32 women, you know, in their teens and twenties can be diagnosed.
[00:22:56] Jane: There are instances quite rare, but [00:23:00] we're even young girls, three, four years old and can get ovarian cancer. That puts pressure. I feel like a lot of the symptoms are symptoms. not being able to get pregnant because I have ovarian cancer, but I feel like a lot of the sentences are ones that my friends complained about when they were pregnant.
[00:23:18] And it's that sucky thing where you have this thing where your ovaries decide to grow and kill you and they get new life. And so needing to pay more and frequently and urgently and, fatigue, feeling bloated and not being able to eat as much in one go. So particularly, how you feel after Christmas dinner, if every dentist starts to feel like that, and you're reducing the portion size that you were eating for me, I think I compensated by eating lots throughout the day.
[00:23:48] And then I was like, oh, I'm just sneaking lots because know. and that's why I'm not hungry at dinner, but it was a snacking lots because I was really busy and I was really active and I was doing a lot of stuff and I still needed to get those [00:24:00] calories in. So that was how, and I think you do a, just, I hit a slower growing tumor and so some types of ovarian cancer, you know, can grow very advanced within months.
[00:24:12] And Can take much longer. And my symptoms came on quite slowly. Whereas other people might notice all these changes within a month or a couple of months. And there's also.
[00:24:24] and so there's also a domino or power vehicle back pain that people can get. Tiredness is really common. So I guess if you're tired and nothing else is going on, then that's probably not something, but if you're experiencing these symptoms and you're also fatigued for me, I think when they talk about tiredness and cancer, I don't know if you experience fatigue, with your diagnosis.
[00:24:49] Jane: I thought that it would just be that her windows fatigue, but it was more, my friends used to joke that as falling asleep and movies, I was getting off at six 30 to go to [00:25:00] spin class and working full-time and doing my masters part-time and accounting and finance, and, lots of continuing education for optometry.
[00:25:08] I was in a new relationship. I'd just come back from north America. And so I seem to get every single. Going in the Southern hemisphere, and so you, it's really easy to rationalize these things. And then, I had to drop the spin class, but then I was like, oh, these walks are just hard because an unfair, because I'm not doing enough exercise.
[00:25:26] And the south talks, particularly because you're going to doctors and these doctors are feeding this back and telling you that nothing's wrong, even though you feel like something's happening. And Those are some of the common symptoms, but people can also get into gestures. They can get nausea, they can get, they can get a painful six or an abnormal vaginal bleeding or discharge.
[00:25:50] And unexplained weight changes as well. So people talk about putting on weight often. That's just that their tummy is getting better, bigger, even if the white [00:26:00] might be staying quite similar, because of the tumor or putting on a little bit. but people can also, can also lose weight because of the effects on eating and nausea and things too.
[00:26:09] and the cancer. Yeah. so lots of, lots of potential symptoms and student led. It's really the key thing is that if you're someone who has ovaries and so any woman, who was. That terminologies or always Turkey. But if you're a woman who's born with ovaries or you're someone who identifies otherwise, but was born with ovaries, then if you experienced any of those symptoms and they last for longer than two weeks.
[00:26:39] Jane: And so it doesn't have to be that they'd be all the time, but they can be coming and going. But if it's something that you're noticing over a two week period, and it's something that's new for you. Something that's unusual. You might have had these kind of symptoms before that this is different or it's something that you have, but it's [00:27:00] getting worse then definitely you should be going and seeing your GP and asking, look, this is what's happening.
[00:27:08] What's going on. And it is always a really fine line because you don't want, most of the time these symptoms are. Uh, Varian cancer, but it is really important for people to know that unfortunately, a lot of women with ovarian cancer, most women do get misdiagnosed and do have to visit the doctor again and again.
[00:27:29] on average in New Zealand, I did a survey at the support group three to five times before they were tested for it. The test is a blood test, put a CA 1 25, that checks for a protein and the black. Also an ultrasound at, and so that's something we give every pregnant woman, but it's hideously rationed in the public system, particularly at the blood test is normal, but one in four women with ovarian cancer do have a normal blood test.
[00:27:57] Jane: Particularly if the cancers early [00:28:00] worth your, if you're younger, if you're premium or, and so sometimes the only option is to go private, but it's definitely, if you can afford it. Get checked. And if you can't afford to go private, keep persisting with your doctor. And two it's been ruled out because there really is the thing where for so long of your brain cancer was the last diagnosis that people got to and really, the best chance of survival.
[00:28:25] the. Sometimes it can be cured if it's caught early enough. And even if it can't be cured, you get a lot more time if it's found earlier. So it is really important to process and get those answers. If someone, if you do have concerns and you feel like something isn't right.
[00:28:42] Helen: So many layers here.
[00:28:43] I think in my little brainstorming, ticking over, it's a big talking, cause I feel like so many of those things, whether it's. Like the wellness movement where, oh, you're bloated, you must have a gluten. And so, you know, those, those sorts of things of, Yeah of, we [00:29:00] are often tired and I think that pain and our reproductive years, for people of women is a given, like you just need to put up with it.
[00:29:08] In fact, I think watching this really interesting topic going through tech talk at the moment, which I find fascinating where. 'cause I know for instance, and I know this sounds like a tangent, but I promise it's all related. I know in the UK, for instance, you're not often put under to have a hysteroscopy because it's not seen as something that is that painful or women or people who get IUD for contraception or to manage periods and that sort of thing.
[00:29:41] The, my Raina. They don't, they just put them up and
[00:29:46] Jane: big time and goodness, I actually, I, I went to, to get an IUD after my diagnosis because I can't it's my cancer's hormone hormonal ones. And they were like, oh yeah, yeah, you'll be fine. You'll be fine. [00:30:00] Horrendous couldn't do it.
[00:30:02] And afterwards I was speaking to my cancer specialist and they're like,you haven't had children. That's really painful Durham. Why didn't they offer you? And then it's finished and yeah, but there is this societal expectation. Isn't the errands. I think, yeah, it's a huge thing where as women we're taught to put up with it taught to not be a hypochondriac.
[00:30:24] We visit the doctor far too much, which we don't, we just visit the doctor and appropriate level of times. and so we south justify things and I think the medical profession also doing it's really important that they test and they rule stuff out, rather than just. You know, making these diagnosises based on probabilities because the rehab diddly probability always misses out when you do that.
[00:30:48] And sometimes you're going to be wrong. And I think there is an issue. I was speaking to a doctor. oh, a few months ago now. And they were saying, and I guess that they didn't know much about ovarian [00:31:00] cancer and they made student assumptions because obviously I'm quite young and are like, wow. It is really a thing that young woman just present to their doctor with these lab bags symptoms where they're not okay.
[00:31:11] And and it's nothing and her flight. Well, actually the only people that I know of who went to the doctor with these problems and, there are people who have. dismissed and dismissed. And then they head, they can't all the head endometriosis, or they had lupus or some other kind of condition that got found out 15 years later, or five years or two years.
[00:31:32] But all the doctors that they saw and between that time, we're like, oh, this is just another. And, you know, they don't find that information out there. Actually, we were wrong because it happened so far in advance. People go and see other doctors because you're not listening to me. And so they don't get that feedback.
[00:31:49] And so actually it reinforces that really, That really wrong view. what, which is hard, but also, yeah, it's so difficult for women to, [00:32:00] to get heard. and yeah, I was just in the airport, quite recently speak and got speaking to someone and it was someone who'd had, you know, Uh, very intrusive.
[00:32:09] And so they weren't cancerous, but they had them for over 15 years of seeing doctor after doctor. And no one would take them seriously. They're just like, no, that's normal for you to be in extreme pain around the times of your period and the bowl on the floor for awaken and everything. And it was only because they miraculously got pregnant.
[00:32:31] And then got an ultrasound because they were pregnant. it really makes you feel sometimes like females are valued for our reproductive, this over being alive and contributing to society, these things. and then they realized, oh goodness, we can't see your ovaries. And it was because they were huge and they, the tumors were over a kilo in size and.
[00:32:51] that's the kind of science where someone had bothered to, to feel his stomach. I would've been able to tell that was there. And so it's, it is [00:33:00] really crazy that, it's a thing. and the a case, they had a family member who also had this condition who was making. the type of tumor that they have can also happen in males.
[00:33:10] Jane: And the family member got diagnosed pretty much straight away because when a man presents with these funny symptoms, they're like, oh, that's unusual. We didn't investigate. But when a female presents, it's oh, it's probably this. and it gets brushed off. And I think that can be really difficult.
[00:33:28] And of course not all doctors, some doctors are amazing, but it definitely. It's a thing and there is a huge amount of gender bias in healthcare. And I think that's been poorly yeah. Really poorly recognized. Like we recognize that a woman in regards to safety, domestic violence, that's an issue we recognize in regards to pay.
[00:33:49] Helen: but yeah, it's society really. It's only just now that kind of this getting a bit more recognition that actually we're doing a really bad job on women's health as [00:34:00] well. Yeah. And it's, it's something that I feel very passionate about because there's areas of my life, there have been severely impacted by being misdiagnosed. I mean, my GP is actually quite amazing, so I feel quite lucky that I do have a good job. Well, you know, she's cautious. She would always be like, well, let's just check that out or let's just do this, which I actually.
[00:34:20] It more and more realizing that's not the norm. and even with my breast cancer, when I first saw someone, I presented at a white cross, which here in Oakland is after hours emergency or,emergency sort of GP, clinic. And, the first thing that the nurse said to me during being triaged was, don't worry, you're too young for it to be anything sinister, And. It was misdiagnosed really at the beginning because they didn't say, oh, you should go and get that checked out. They went, Yeah, maybe go get an ultrasound. so I was just very lucky that breast cancer. Like I had a lump, I had a hard lump that didn't move and then a very odd ropey feeling thing on my breast.
[00:34:59] [00:35:00] And so that was obvious, but I, I am someone who was diagnosed as an adult with ADHD. I had been misdiagnosed from a teenager into my early twenties with mental health conditions that I actually never had. And pat of that is a bias. With ADHD and autism, as well as very common for women who are older when they're diagnosed with autism, that the diagnostic criteria is based on studies on young Caucasian boys.
[00:35:32] and so the impact on people's lives when there isn't enough research or the research isn't, you know, varied or wide enough is huge. And it's yeah, it is something that I feel I can feel myself getting ranty
[00:35:47] Jane: now, but it just it's. It's so true. Isn't it? that gene. Data gap and that we there's someone quite prominent in the U S institutions who, [00:36:00] has been quoted saying that we literally know less about women's bodies than men.
[00:36:04] and it's so true, like completely and another tangent. But I think like the clutter, this was only like anatomically. Characterize like quite recently, definitely in our lifetime, but I think in our adult lifetime, and I just can't relate that because I'm like, how long have we known everything about the male body, about rabbits, about frogs?
[00:36:29] Jane: Do you know, like in all these anatomical textbooks for centuries Yeet. With NEBA anything they're interested in, you have the males doing all that research and study. So they just didn't look into that. And clinical trial participations, like heart attacks are the same seatbelts woman and especially pregnant women are more likely to die in car crashes because the dummies are an average male.
[00:36:55] And I think now they include females, but they're always a passenger because of course [00:37:00] a woman drives.
[00:37:00] It is, it is, it just feeds into all these aspects. Doesn't it. And I think these, that kind of barrier when you're younger, these hit barrier. When you're a female, there's a barrier when it's a topic that. Comfortable discussing publicly as a society that has had some stigma and a varying cancer kind of, I ha oh three of those,which is why it's so hard to get a diagnosis in that way as well.
[00:37:24] Yeah. It's
[00:37:26] Helen: such a good point because I really. I have issue with, when they say they're going to be no more cancer deaths or we're going to stamp out cancer. I guess, um, you know, one of my guests, I think 2020, I spoke to, CA Annie, who is a fantastic researcher in the UK.
[00:37:45] And she wrote a book called rebel Sal. And the thing is that. As long as we have dividing cells or cells that can divide, we ask susceptible to being able to get cancer. Like cancer has been around for millennia. I think that maybe [00:38:00] we're realistic thing is can we figure out exactly what makes.
[00:38:05] Cause it, but also knowing that cancer is an umbrella term for hundreds of different diseases. And that maybe it's not to say that let's not have anyone in New Zealand being diagnosed with breast cancer ever again, that's just not going to happen. And I feel like, yeah, that dialogue actually needs to shift around.
[00:38:28] What is, what as a society, how can we set things up? So we reduce that risk and then also, okay. When that person may get it, what can we do to make their life as good as it can? With, they act cured or they are living with cancer.
[00:38:46] Jane: That's so true, isn't it?
[00:38:47] I didn't have any risk factors. I was young. I was a half marathon runner who loved eating carrots and like I was Simi vegetarian and all of those things, but I think it's so easy for [00:39:00] that blame. if I had been overweight or if I'd had a bad diet or if I'd smoked, whatever to say, that's what calls and that's weird.
[00:39:07] Jane: It's a real societal way. People don't understand the difference between population health and individual house. And that it's, these things are really important when you look as the country and the world as a whole, but actually on an individual level for most people, they don't matter as much, for example.
[00:39:29] Like the oral contraceptive pill reduces your risk of ovarian cancer, but it only reduces it. And all the women that didn't really have enough, like 140 people would need to take it to reduce one case, and you're always going to have people who not having any of the risk factors and all have answered the positive ones yet, who will get cancer because of those cells dividing.
[00:39:49] And so there needs to be that balance between preventative care is really. Important for cancer, but we need to recognize that we don't actually understand why people develop cancer and probably [00:40:00] a lot of it for many cancers. A lot of it does come down to the fit. As you say, as sounds divide as part of us growing and staying alive and just, we had this slightly difficulty system that every now and then the lottery balls, unfortunately came out with our number and we get cancer.
[00:40:21] And actually that diagnosis is really important. That treatment is really important and we need to put a lot of resources into it. And I I think that one day. We could get to a point where we can cure all cancers, because I think we, as we learn more about it, to take an example, with breast cancer, we're most just really well-treated, but there's still a proportion of people whose.
[00:40:43] Come back, there will be a reason for that. And it's just that we don't know that reason. And so we have cancers where we know a lot more and we've got rid of a lot more. And the annoying thing about being female is cervical cancer, because everyone's oh, well, we're doing a great job with women's cancers.
[00:40:56] it's not gender bias because of cervical and breast cancer. [00:41:00] festival breast cancer, survival is lower than. And testicular cancer. And then all the other woman cancers come below there, every cancers at the bottom of the list, but also, cervical cancer in some ways is like the magic cancer and that they can directly visualize it without surgery.
[00:41:16] Jane: You know, your cervical screenings, like a moment for your, um,
[00:41:19] And it grows really slowly. and most of it's from a singular cause. And so it's something like 98, 90 8% preventable, but that's, and so I think people when think that every other female cancer is also like that. You know, prostate cancer, they get better treatments. Whereas people always ask about if you're in cancer, we must need a screening test to find it, And so it, it is really, yeah, that kind of discussion is interesting too, but you do raise a really good point about, palliative care and that's not very well-funded and I can't treat either and making sure that people do live a really good quality of life. When the [00:42:00] cancer isn't curative.
[00:42:01] And I think that's something we're having head having friends, you know, my cancer over 85% of women die from it. So it's pretty, it's pretty brutal. Um, but seeing, seeing women go through this and how they live, and certainly some women have a really horrible time at the end and some woman have a really good time and a lot of have good.
[00:42:23] The end is can scan to. The healthcare that's available to them and the way that, how service works and also society, because I think we can really box people and be like, are they really L and PESI instead of recognizing that people, you know, they might have cancer, they might be dying, but they're still that same person and they still are.
[00:42:46] Have a lot to contribute, even though they don't have all those externalities.
[00:42:52] Helen: oh, Jane edit. Yeah. It has been such a pleasure to talk to you about your amazing work and, just getting more insight [00:43:00] into ovarian cancer.
[00:43:01] And if people, if people want to follow you or if they want to donate, where can we find you?
[00:43:07] Jane: Oh, fantastic. So the website is cure our ovarian cancer.org and that's R as N O U R a. And on social media, the New Zealand social media isovarian cancer in Z and the international research for younger woman's.
[00:43:24] Uh, ovarian cancer is cure our ovarian cancer and I'll
[00:43:28] Helen: put all of that in the show notes as well. And if you follow me on, oh yeah, LinkedIn, Instagram, and on Instagram, in my links, I have a direct link that you can click on,to donate. have a look at that and thank you again, Jane. It's been such a pleasure.
[00:43:43] Jane: Oh, wonderful. Thank you so much. Challenge. This has been great.
Comments