In celebration of Ovarian Cancer Awareness Month, Fempower Health interviews top leadership at the Ovarian Cancer Research Alliance, the largest global charity for ovarian cancer research and advocacy.
Audra Moran 02:23
Well, thank you so much for having us. We're really excited to be here. My name is Audra Moran. And I am the president and CEO of OCRA.
Sarah Defeo 02:33
Yes, I'm Sarah Defeo. And I am Vice President of Scientific Affairs and Programs for OCRA and work closely with Audra.
Audra Moran 02:41
OCRA was founded in 1994. So it's the oldest and largest ovarian cancer organization. In the world, actually, we fund research. We provide education, which we're happy to talk more about for medical students but also for the public. And we actually provide support services as well and do advocacy. So we're kind of a 360 approach. And Sarah does a lot of that. Sarah handles most of our programs, so she can speak to it much more than I can.
Sarah Defeo 03:11
The organization has really evolved since the time that Audra and I have been part of the organization I joined in November of 2008. Time really flies. And Audra, you joined in 2010? Yep. It's been more than 10 years for both of us. And I think when both of us started certainly when I started in 2008, and also when Audra came on board, you know, it was a very different organization, much smaller. And the organization was always a national organization, but was only funding research really, at that point. And since then, we've just evolved into sort of grown up, I think a lot and evolved into the organization that Audra described and that we are today and we do so many more things now fund research, provide support, educate all those things and really, really try to serve our ovarian cancer community in every way that we can and to try to meet patients and families, no matter where they are, whether they're just diagnosed, or whether they're long term survivors, we try to provide resources and be there, be there for them.
Georgie Kovacs 04:27
It's great to have you all on this podcast. I had reached out because I know it's ovarian cancer awareness month and I did some research around who would we want to interview and being in the biopharmaceutical industry and also working through my own fertility journey. I've seen firsthand the power of advocacy groups, and those who do research and so I thought who better to talk about what's happening in the space of ovarian cancer - how women get diagnosed, where the research is at, any gaps - to at the very least create awareness not only for those who are struggling, but also for people who don't even have awareness of ovarian cancer because we all think with any kind of cancer illness, it's not going to be me. But in my initial research and I even remember in college, there was a seminar where someone came in and spoke about HPV and ovarian cancer. That was the only discussion I've ever heard. It just so happened, the people I was surrounded with happen to bring an expert in and I don't remember a whole heck of a lot except that it's really scary and often goes misdiagnosed or not diagnosed. And so I thought, if it's Ovarian Cancer Awareness Month, let's leverage that to create that awareness. And I appreciate that you guys are open to this because I think it's really, really important, especially for those who aren't even aware. Start by talking about ovarian cancer, like, obviously it's a cancer but what else can you share about what it is and how women get diagnosed? Like, let's really help women understand where things are at with this.
Audra Moran 06:14
I think, Sarah, you're probably better to do a lot of this. But I will say that one of the biggest myths is that a pap smear test for bearing cancer and it does not. So that's pretty significant. And through the years, Sarah and I, how many times have we heard Sarah, people say, "Oh, no, I got my pap smear, I'm fine." And it's like, No, no, no, that that doesn't test for that at all. That's cervical cancer and it's completely different. So that's one of the myths that we fight really hard. But certainly, there are symptoms. Sarah can talk a little bit about that. And, and no diagnostic tests that by no early detection, but that's obviously a goal.
Sarah Defeo 06:48
All the things that Audra said of course are true. There is no method of early detection for ovarian cancer and this is one of the biggest challenges. Actually, before that. I'll back up and just say that we're here to talk about ovarian cancer and that makes it sound like it's really just one thing. But in fact, it's ovarian cancers. Ovarian cancer is not just one disease. There are different types of ovarian cancer, the most common type of ovarian cancer and the one that is usually being referred to when people talk about ovarian cancer is really just one type - epithelial ovarian cancer, and it's the one that affects the majority of women. So just as a just to sort of set the stage mostly when we're talking when I'm talking or Audra's talking, that's probably what we're talking about. But I think it's important to just say that out loud that it is a heterogeneous disease. And depending on the type of ovarian cancer you may have in may be treated differently. So, just wanted to put that out there. But in general, yeah, one of the most challenging things about ovarian cancer is that women tend to be diagnosed late stage, and Audra and I could talk for a long time about why that is. It is complicated. Certainly, as Audra said that there's no method of early detection is a huge piece, a huge piece of it, and there is research going on in that area. But ovarian cancer in its earliest stages doesn't produce a lot of symptoms.
Audra Moran 08:17
It doesn't really start in the ovaries in most cases. It starts in the fallopian tubes and migrates to the ovaries. It's not fallopian cancer. It's not what we're calling it yet, but that is fairly significant and part of what we believe is part of the reason symptoms don't manifest until much later.
Sarah Defeo 08:36
That's right. Because it doesn't tend to produce symptoms in its early stages. There are some exceptions to that - but for the most part, it doesn't - usually when women tend to start getting symptoms that they cannot explain.
Sarah Defeo 08:51
Most of time women aren't thinking, "Oh, these are the symptoms of ovarian cancer." They're just thinking, "Geez, I'm really bloated. Why aren't my pants fitting? Why does it seem like I'm gaining weight around my middle? I've got no appetite, I can't eat. I take a couple of bites and I just, I can't eat anymore. I'm going to the bathroom all the time. I'm having strange pain in my lower abdomen." These are all symptoms of ovarian cancer, but they're really mostly symptoms of more advanced ovarian cancer because what's causing those symptoms is the growth of the tumors itself, unfortunately. Oftentimes, women with early stage disease don't have symptoms. By the time they get to their doctor, no matter what kind of doctor it is, and they are trying to figure out you know, what is going on? I don't feel right is often an advanced cancer at that point.
Georgie Kovacs 09:42
Do you mind if I ask about the symptoms? I'm an endometriosis patient, and I was asymptomatic. It took three years of infertility treatments to finally be diagnosed and so they called my endometriosis "silent," but there were signs. And I did want to ask about these symptoms, because one of the things, through all these podcasts interviews that I'm doing, is how clear it is that there's almost two buckets. One, the woman's body is often treated as being ill, when it may not be. So for example, menopause. It's not a diagnosis. It's not a condition. It's a stage of life. But on the flip side, there's a lack of awareness that we as women have around how our bodies should operate. And as a result, we grin and bear it, and maybe there are things going on, but we aren't taught on what is normal. We only know what's normal for us. And as a result, even if there are subtle changes in our body, how do we even know what to bring up? Is there research out there around just challenging that, like, Are there really changes to the body or...and I know we're going to discuss this because it's the case with every single woman's health condition which is - maybe we don't know because there's not enough research dollars, just from you have seen? I mean, could there be those early changes? Or are we just not even sure?
Sarah Defeo 11:09
I mean, I think it's certainly possible. And there are women who exhibit symptoms and go to the doctor and do have early stage disease. So it's just not the most common. That is just not typical, but it's certainly possible. Every case is different. But, you know, I think trying to get a better grip on that is something that research is looking into. Certainly a very common experience is that a woman goes to the doctor with the symptoms that seem kind of vague, right? I mean, the symptoms I described are not so unusual. I may have one of those symptoms at any given time. But you know, any of us could, and they don't necessarily seem alarming or necessarily gynecologic in nature, right? So it's very common for women to bounce around to doctors for months trying to get a correct diagnosis, because maybe, well it's mostly issues with their stomach. You go to your internist who's like, "Well, have you been stressed out? You know, have you been eating weird food" sort of pursuing a path that has nothing to do with a gynecologic condition, because it doesn't appear that it would be that. We've got women who go to their internist to GI doctors, to psychiatrists, and psychologists being told, "Who knows?" So it often takes women a long time to get the correct diagnosis, which is a real shame. But I do think that there's an issue there with awareness on the part of women to understand what these symptoms can look like, but also in the medical community.
Audra Moran 13:00
Technically it is a rare cancer - 22,000 cases a year in the United States. And a lot of doctors have never seen a case.
Sarah Defeo 13:13
There are so many questions in here. One is, how does one get diagnosed? Because you said it's not through a pap smear, but I got the sense that there's not a diagnostic so then, is it similar to endometriosis, where you have to go in and do a laparoscopic surgery and see... is that where we are with ovarian cancer? What will usually happen is there'll be a series of tests. A woman might go in with complaints doctor may get concerned, may order a cat scan, or do a transvaginal ultrasound. On the ultrasound or the scan, they may be able to see something in there and say, "Okay, there's some sort of mass. Let's check this out." They may give a woman a blood test that's called a CA 125. An elevated CA 125 level could be an indicator that something is wrong. It's not a great indicator, which is why it's not a reliable screening test or a diagnostic test on its own; but it's one of the things that doctors use, and I'm not a doctor, but it's one of the things that doctors use.
Audra Moran 14:26
A number of things can elevate it like being pregnant or other types of things.
Sarah Defeo 14:31
Yeah, exactly. Tt's not a great marker, but it's something that doctors use when they're doing when they're exploring the issue. But yes, ultimately, women have to go in and undergo surgery to find out what's really going on. Biopsies aren't traditionally done because there's concern about spreading disease through the process of doing a biopsy. I think by the time most women by the time they're going in for surgery, doctors are pretty confident about the diagnosis. It's not a simple process to get a diagnosis. You can't visualize the ovaries very easily. It's not like cervical cancer. You can't see it; you can't feel it. The diagnosis is more lengthy, complicated, and unfortunately, invasive process.
Georgie Kovacs 15:22
Isn't ovarian cancer life threatening? Because we don't always catch the disease early and I don't know how much of a clinical trial there has been done. But is it if you have ovarian cancer, it's a big problem? Is it if ovarian cancer is diagnosed late, which we already know, in most cases it is, that's when it's a problem? Tell us about what women should be expecting about this path?
Audra Moran 15:46
It varies very much based on the type of ovarian cancer you have and the stage at which you're diagnosed. If you happen to be diagnosed early, your chances of survival are pretty good - about 90% - but the majority of women are diagnosed with advanced disease - stage three or four. The five-year survival for all ovarian cancers is just under 50%. It's a very serious diagnosis. Very serious. And there's good news, too. Women are living longer and longer with ovarian cancer. And there's more treatments now than there were 10 years ago. Women are living longer and living better, but any diagnosis of ovarian cancer is very serious.
Audra Moran 16:35
That said, we do say every case is individual. And it really is. We have a major conference that we do every year. We'll have people there with a full range of brand new diagnosed all the way through 30-year survivors. When we do this, it's a very impactful part of the conference where we'll say, "If you're comfortable, will you stand?" We'll ask who's newly diagnosed, who's five years out, 10 years out, and so on. When we get to 30 years out, many women are standing. It's incredibly hopeful because each case is unique. I think that's what people need to take away. Many people go on the internet and read everything read exactly what I just said, which is true, but it's terrifying. And I think it's important to remember everybody's different.
Georgie Kovacs 17:20
If I'm a woman listening to this podcast, as the facilitator of this podcast, I certainly don't want to say, "Okay, ladies, everyone, go get a scan. Let's start over testing. Let's freak out. We all have ovarian cancer." By the way, I'm not at all implying that that was your intention. I'm more thinking about the women who are proactive and are going to go on WebMD and start researching ovarian cancer. I don't want anyone to panic. Granted, of course, this is a horrible condition. Let's call that what it is, but what would you advise to women about being proactive and the risk factors? If I'm not mistaken, didn't Angelina Jolie get her ovaries removed because it's a risk factor, as well as her breast tissue?
Audra Moran 18:13
I would mention in terms of someone running out to get a transvaginal ultrasound or a CA 125. To that point, there was a large large-scale study in the UK 200,000 people, which is large. Clearly, they have socialized medicine, it was easier for them to do this. And they did do this. They administered CA 125. And they did transvaginal ultrasounds over time, and I forget the period, but it was a long period of time. The results were disappointing, at least in the category of people that weren't genetically at risk. They did identify, in some cases, ovarian cancer earlier, but it didn't change the endpoint.
Audra Moran 19:04
Basically, you find out sooner that you have ovarian cancer, but if you're going to die from the disease, it's literally the same amount of time. It was heartbreaking because these researchers devoted 30 years of their lives to this. But it did prove that it's not going to be the Holy Grail. That's not going to be the early detection test.
Sarah Defeo 19:31
Georgie, you're absolutely right, that that's not what we want women to do. But there are things that women can and should do. And it's also important to note that this is a rare disease. I mean, it's not so rare that once you have an awareness of it, and you start talking about it, you're going to start to realize, "Oh, it was my, my friend's mom, she died of ovarian cancer. Oh, and it was, you know, so and so's sister. I actually think she had ovarian cancer." It is a rare disease but not rare enough.
Sarah Defeo 20:03
There are things that people can be proactive about. The number one thing that I always encourage women to do is to know their risk. You asked about risk factors. And yes, there are risk factors, and there are things elevate your risk, and also things that reduce your risk. One of the biggest things that we know about in terms of risk factor is certain genetic mutations. You mentioned Angelina Jolie, right? She was positive, I believe it was for the BRCA1 mutation, which is most well-known for being a high-risk factor for breast cancer. But as you said, also for ovarian cancer. Women with BRCA1 and BRCA2 genetic mutations and a whole bunch of other genetic mutations, less well known, because they're less prevalent, women with those mutations are at higher risk. And researchers are working hard on better defining what those mutations are and to what extent those confirm increased risk. That's something that researchers are working on. I think it's important for women to look at their family histories, ask questions about what cancer exactly was it that Great Aunt so and so had and what did grandma have? Because if there is a pattern in your family of women with breast and ovarian cancer, then you should absolutely go talk to a genetic counselor, who will take your family history, ask you a bunch of questions and help you decide if genetic counseling or genetic testing rather, is something that you should consider. One of the most important and impactful things that we can do to stop women from dying of ovarian cancer is to find the women who are at highest risk and, if possible, intervene so that they never get the disease in the first place. Angelina Jolie had a prophylactic mastectomy to prevent herself from getting breast cancer. She had her ovaries removed, hopefully to prevent her from ever getting ovarian cancer. Those are big choices to make in your life, but we at OCRA believe very much that knowledge about this issue really is power and understanding your family history and to the extent that that can impact your risk is thing number one that you can do.
Audra Moran 22:25
Maternal and paternal side, I just want to note. Some people think it is only one side.
Sarah Defeo 22:31
I carry a genetic mutation, and it came from my father, which does make a tricky because my father had brothers, there's not a strong history of breast or ovarian cancer in my family, but my dad had only had brothers.
Sarah Defeo 22:48
It can be tricky. It's not always super straightforward. But yes, that's a very good point. Audra. Very good point.
Georgie Kovacs 22:52
I never even thought about it that way.
Sarah Defeo 22:55
Outside the genetic component, there are other risk factors as well. Increasing age, which is a very big risk factor. If you haven't had children, the flip side of that is that a protective factor is having had children or using birth control. Oral contraceptive use for five years or more, is probably one of the easiest things - well, taking medication - it's not it's not a small decision, but it significantly reduces your risk of getting ovarian cancer.
Georgie Kovacs 23:36
Okay, so many questions. Let's start with what you just said about birth control. As I mentioned, I've been dealing with women's health personally and professionally, just really staying close to it for 10 years. Initially, it was fertility and now I've really broadened out because at the end of the day, if you don't solve for the root cause it will impact your pregnancy. Also, not every woman wants to have a child. It really needs to be a women's health focused.
Georgie Kovacs 24:06
There's a lot of controversy out there about birth control pills, and how it impacts your health, and how it can temporarily impact symptoms like acne and whatnot, but it may mask what's really going on with you. Yet I'm hearing now that it reduces the risks of ovarian cancer. I honestly don't even know what to do with that, because it's such a contradiction. So why this birth control assist?
Sarah Defeo 24:36
I think this is something that researchers are still trying to figure out. Exactly what mechanism is that work? And exactly, why is that? I believe the theory is that it has to do with the interruption of ovulation, and which is why pregnancy and breastfeeding and oral birth control pills - it's probably all related. But it's the interruption of ovulation that seems to have a protective force.
Sarah Defeo 25:07
Yeah, it's quite fascinating. If there's a woman who's truly worried about her risk, but is say, only 30 years old and maybe she knows she's at high risk but doesn't want to have her ovaries out because she's 30. And maybe she wants to have kids someday. Taking birth control pills is something that I suspect most doctors would or you know, it's something she should talk to her doctor about.
Georgie Kovacs 25:35
Silly question, but I must ask. Has it been studied with PCOS patients, who don't ovulate very frequently, whether or not the risk factors of ovarian cancer are the same as any woman or different? I have heard about the frequency of ovulation impacting ovarian cancer, but what about the PCOS patient?
Sarah Defeo 25:57
I don't know. That's a good question. That's, it seems Like, I don't know if you know, Audra, probably someone has studied it because it is a great question. And I think researchers are trying to better understand exactly what is going on there biologically. But I don't know.
Georgie Kovacs 26:11
So then back to testing. We heard about 23andMe and now Ancestry also has their own testing. I do believe, I haven't researched what they test in extremely great detail. I do think they do look at BRCA. Genetic testing is expensive, and we are in this age of testing. Are those effective if someone wants to start to get to know their risk factors? know that you're not an MD? So we'll all qualify that acceptance, but just from what you've heard, are there any precautions Do they even not test for it? Like what perspective should someone have in this age of testing at home?
Audra Moran 26:54
It’s my understanding that it does test for the big ones. BRCA1 and BRCA2, but there are apparently hundreds, if not thousands. I'm not even sure how many mutations of BRCA so I think that it can ensure that you don't have it. And unfortunately, it gives people I think, a false sense of security because they take it and it comes back negative, in addition to the fact that if it comes back positive, a genetic counselor is really key. And I know, Sarah, you addressed that, but it makes all the difference. That's a huge thing to find out in your mailbox, with nobody around to talk to.
Sarah Defeo 27:30
It's kind of the Wild West out there with this testing, and I'm not an expert on this. I don't know what 23andMe versus Ancestry, are testing for. I think there certainly is a lot of opportunity and room for innovation in this space. And I think it's great that researchers are trying to look at ways to break down barriers to access to testing. This is extremely important, especially given the potential upside, and the benefit to people in terms of access to testing, but I think that there's probably some ways of doing it are better than others. And you know, this is being studied. Something that OCRA is being been involved with is a large study that's looked at making genetic testing more accessible. There is a big clinical trial called the Magenta Trial. We are going to cover this at our conference at the end of September all about the trial, and looking at how we can use more innovative methods of genetic testing and counseling to help people access it but access it in a way that doesn't cause undue stress and confusion. And some of that involves just making sure that people either have access to genetic counseling remotely, prior to or after testing, or just access to information. What concerns me is just what Audra said. Getting genetic testing may feel like not a big deal until you get a positive result. And then all of a sudden, you have this information, and you have to try to figure out what to do with it. It's not an easy thing to navigate. It's not something that we should approach to a cavalier manner, but something that people really need to educate themselves about. If at all possible, seek out a genetic counselor first, and if you're not a good candidate for genetic testing, your genetic counselor will tell you. They're not in the business of selling tests. They are in the business of helping you understand the potential benefits and risks to genetic testing.
Georgie Kovacs 28:34
I'll tell you the three next things I wanted to talk about, I'll list it because they could all have something to do with one another. 1) I believe when I had my laparoscopic surgery for endometriosis, they did go in and look for possible ovarian cancer because I've anecdotally heard about the risk if you have endo. 2) I seem to recall from that college conversation about HPV and ovarian cancer, so either I misremembered it, or it was correct what I remembered. I'd love for you to validate or invalidate that. 3) The last is related to fertility medications. I've read both that there is a link and then I've seen that there isn't. I want to bring this up because there's a rise in the use of fertility meds with egg freezing. So it's not just those who are struggling with fertility, but those who are doing fertility preservation.
Georgie Kovacs 29:58
Can you help like either validate or say those are myths?
Sarah Defeo 30:12
Well, I think we can say with HPV, to my knowledge, there is no link between HPV and ovarian cancer. The link is with HPV and cervical cancer. That's what the pap smear is looking for. It's looking for abnormal cells.
Georgie Kovacs 31:23
I seem to recall that there's an association between endometriosis and ovarian cancer. I know when I had my laparoscopic surgery, it seems like they were checking to make sure I did not have ovarian cancer. I'd love to know more about that.
Sarah Defeo 31:45
Yes, you're right.