Audra Moran 02:23
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. Endometriosis is a risk factor for one of the types of ovarian cancer. I think it's endometrioid ovarian cancer. That would make sense. It makes total sense that during your surgery, your doctors were saying, well, let's see. It's good that they were doing that.
Sarah Defeo 32:23
I think this (fertility meds) is another complicated and confusing one, sort of like hormone replacement therapy, where it's like, well, we hear this, but then we hear that. It's something that's being studied actively, because I think there has been conflicting data. Scientists are continuing to try to tease it apart and understand it. I believe that more recent studies have shown that there is no significant increased risk. Now, I would need to go back and check my sources. Some studies may have shown an increase in risk. There is a question of, "Well, what does that mean?" Maybe it's technically an increase. If it's a very small increase for a fairly rare disease, that the vast majority of women don't really need to worry about more the time, it doesn't necessarily mean that that's a reason for a woman to not to go through fertility treatments to freeze her eggs. Even if there is an increase in risk, I think we would need to look at it in the context of how big an increase in risk we are talking about here. If it's going to quadruple your chances of getting ovarian cancer or put you in a high-risk category, which it wouldn't, that would obviously be very alarming. But if we're talking about an incremental increase for a woman who is otherwise low risk, that's not as alarming. I think the context really matters there.
Georgie Kovacs 34:03
Thank you for explaining that. The way clinical trials are designed, and also what they mean and how they're applicable in the day to day is so important and unfortunately sometimes in the media, it's the headline, so I appreciate you sharing that context.
Georgie Kovacs 34:27
The summary here is high risk factors, potentially the CA 125 could be an indicator. Family history, increasing age, not necessarily not having children. And then by the way, having children and breastfeeding reduces. Birth control seems to impact ovarian cancer.
Georgie Kovacs 34:49
So, if women have the risk factors, what's the next step for diagnosis and then treatment?
Sarah Defeo 34:57
It depends on, If you're a healthy woman, but you have risk factors, say you have a family history of breast or ovarian cancer, or if you know you have a genetic mutation carrier, I think you need to partner with your doctor and get some really good advice about how you want to manage your risk. There's no one way to do it. You know, this is very much a personal decision that has to do with your own factors, you know, most importantly, your own risk tolerance and where you are in your life. There's two different women in the same situation could make different decisions, and those would be the right decisions for them. I would just encourage a woman who is concerned about her risk to get that checked out, or if she knows she's high risk to talk to your doctor and make a plan so that you can partner
Audra Moran 35:56
The type of doctor matters, too. If it were ovarian cancer, we'd be talking about a gynecologic oncologist.
Georgie Kovacs 36:03
That was my next question because one of the things I'm learning. There are these sub-specialists, many of which I have I never even had heard about. It's not just going to an OB GYN. There's more to it. Obviously, the first step is the OB GYN, but when do I go to someone who sub specializes it. Is it when I'm high risk and just want to triple check?
Sarah Defeo 36:38
I'm very glad you're brought up this point about the importance of gynecologic oncologists. If a woman is gotten to the point where there is a suspected ovarian cancer diagnosis, and if at that point she is still seeing her general OB GYN, the doctor who delivered her babies 15 years ago or the person she's just been seeing every year - at that point that that she needs to go see a gynecologic oncologist. A gynecologic oncologist is a doctor who was specially trained a women's cancer doctor. There's been ample research that has shown that women with ovarian cancer who are treated by gynecologic oncologists have better outcomes. It's one of the most important things that a woman can do is make sure she's being seen by a specialist. And if your regular OB GYN says, "Oh, no, I can do the surgery," you gotta push it. It's worth making a special trip. It's worth that second opinion, contact OCRA if you need help getting one. It's extremely important that a woman see a specialist and have that surgery done by someone who's really an expert in that.
Georgie Kovacs 37:54
Do you have a list on your website of who those experts are by geography, or would they just need to call you and get words of wisdom? If you have a website, I can put a link in the show notes.
Sarah Defeo 38:04
We have a lot of great resources on our website, which is www.OCRA Hope.org. We have information about all about ovarian cancer, support resources. We don't have a specific list of ovarian cancer specialists. There are thousands, but we can help connect women to make sure that they find someone.
Georgie Kovacs 38:39
Tell us about treatment options.
Sarah Defeo 38:46
It depends on diagnosis and the particulars. Standard treatment is surgery to try to remove as much of the cancer possible surgically and then follow up with chemo. The specifics of in what order this takes place exactly what you get with it would vary from woman to woman. That's the basic course of treatment.
Sarah Defeo 39:14
After initial chemo has been completed, then there are different options depending on a woman's specific situation. There may be maintenance therapies that you take sort of on an ongoing basis to keep the cancer at bay. You may go off treatment for a while. With ovarian cancer, unfortunately, it's quite common for women to do very well upfront but then to have the cancer come back. Dealing with the recurrence is a very unfortunate but common thing for very cancer patients to deal with. It's surgery and chemo and then you go from there.
Audra Moran 39:51
It's also very important to know your genetic status. A lot of people are diagnosed with ovarian cancer and they think, "Well, I've already got a grand cancer. I don't need to know." But they do need to know because there are some treatments that would actually be more effective if you're BRCA positive, for example. It is important. Unfortunately, that's not currently covered by insurance, which is one of the things that we're working on in Washington. I think that's with Senator Gellibrand’s office. It would be wonderful to have genetic counseling for everybody. But at the very least, it should be for someone that needs it for treatment.
Sarah Defeo 40:28
Because there are some treatments that are best for you, that can be better for you. If you do know the profile of your tumor, for example. Yeah, it's essential that as many women have access to that testing as possible.
Georgie Kovacs 40:40
It's incredible what's happened in the oncology space. I mean, I'm very fortunate to have worked in the earlier part of my career with some great folks who are now in top leadership levels at some of these biopharmaceutical companies. They're doing all those targeted therapies and it is unbelievable. I get chills. The coolest science.
Sarah Defeo 41:02
It's like science fiction coming to light stuff. It is amazing.
Georgie Kovacs 41:08
One point I just wanted to bring up is around the prostate cancer versus ovarian cancer research. When I was speaking with Deb, who's one of your colleagues, she mentioned this to me and maybe you could just share with the audience about that perspective. Just so people understand like why there's so little we understand yet we hear so much about prostate cancer in a different regard. So maybe tell us about those research disparities?
Audra Moran 41:41
One of the things that I think, you know, we talked about in the ovarian cancer community that is sometimes a point of frustration is that we feel like not enough people know about ovarian cancer. There's not enough progress research about ovarian cancer, even though progress is being made. When you look at ovarian cancer compared to other diseases, other cancers, ovarian cancer is very underfunded. I think because it's a rare disease or rarer disease, it's easier to say, "Well, of course, it doesn't get as much funding because it doesn't affect as many people. It's not like breast cancer." And it's true. It's not. However, what really, unfortunately and sadly defines ovarian cancer is the mortality is very high. We may have 22,000 women diagnosed every year with ovarian cancer. We also have 14,000 women who die every year from ovarian cancer. Those deaths as a proportion of that total are far greater than with other diseases. When you look at it that way, ovarian cancer is very underfunded.
Audra Moran 42:48
Typically, when we say underfunded, we mean federally, which comes from the NIH (the umbrella with NCI, the National Cancer Institute) and also the DoD, the Department of Defense funds ovarian cancer research. That's usually what we're talking about. I mean, we would love to give more money privately, but I'm we're small part of that. We are more focused on young investigators and collaboration, but those are the big grants.
Sarah Defeo 43:22
When compared with other diseases that even have a similar mortality in terms of people that it affects like that, ovarian cancer gets much less federal funding per person than other diseases. And that's wrong. I mean, yes, prostate cancer affects far more people, but not a significantly greater number of people die from it. Most prostate cancer patients are alive. People survive it mostly. Same with breast cancer. I mean, obviously, that's not the case for everyone, but proportionately. Ovarian cancer is a far more deadly disease, and we think that it should get more attention and funding because of that. Its burden is really quite significant.
Georgie Kovacs 44:14
Kudos to advocacy groups. For women out there who haven't worked closely with them, advocacy groups are, where it's at and going to DC and really fighting for women's health rights.
Georgie Kovacs 44:33
You alluded to it earlier. OCRA educates clinicians on how to properly diagnose women, because a lot of these symptoms even you mentioned early on, they could be other conditions. As a result, they may be dismissed, and no one would even look at ovarian cancer. Talk about some of these other things that you want women to know about the incredible efforts you're doing to help those who are struggling with this really tragic disease?
Sarah Defeo 45:13
There is, you know, I feel bad because I paint the sort of dire picture and I want people to understand that, you know, this is a serious, a really serious disease but you know, there's a ton of hope there is a ton of progress. Our organization, Ovarian Cancer Research Alliance, we're really trying to lead that charge, whether that's in Washington DC, on Capitol Hill, in lab by funding research or researchers, and by supporting and educating our patients and clinicians as well.
Sarah Defeo 45:46
You alluded to educating clinicians. We have this this big, very cool program called Survivors Teaching Students that brings ovarian cancer survivors into the classrooms with med students and nursing students to talk to them about the disease. The facts of the disease, but also just about the experience of dealing with an ovarian cancer diagnosis. Our hope here is that the majority of those, those folks are not going to necessarily go on to become gynecologic oncologists, but they may be your gastroenterologist. They may be your internist. Our hope is that we can reach those doctors and impact them so that 5 or 10 years later, when a woman walks into their office complaining about these weird symptoms she's having the doctor will think of ovarian cancer when otherwise maybe she would not have thought of ovarian cancer and that diagnosis.
Sarah Defeo 46:40
We reach over 12,000 students a year through that program, and we have an army of amazing volunteers who participate in that program and it's a wonderful effort. We have a whole host of educational and support initiatives as well. A great annual conference that's taking place virtually this year September 29 through October 2. It's all online. We've got an amazing program of speakers covering topics related to research as well as survivorship issues. We have a lot of information about that on our website as well.
Sarah Defeo 46:41
We have a growing host of support programs to. We know that whether it's from the point of diagnosis or whether a woman's going through a recurrence years later, a cancer diagnosis, especially one of ovarian cancer, which can be really tough disease, can be a very isolating and challenging experience. We're trying to meet that need. We have weekly support groups. We have a peer-to-peer support program network called Woman to Woman, which we've expanded over the years that pairs a newly diagnosed woman with a trained volunteer mentor who can encourage her and offer support.
Audra Moran 48:05
We have a whole host of activities that we're doing. We're always busy, always growing, always expanding, always just trying to evolve to meet the needs of our community.
Audra Moran 48:14
And we have staff in DC. They actually do advocacy professionally trained. One of the big successes last year was the DoD had flat funding program cancer for years. $20 million was their budget and it increased to 35 million. That was a huge win last year. We're fighting to keep it this year. But of course, everyone's attention is sort of elsewhere right now. We are waiting for them to come back and do appropriations, which will probably be after November.
Georgie Kovacs 48:55
Awareness is key. I hate to say the theme I see over and over again is we women don't know enough. We certainly don't want to make women panic. But there's just such basic things we just need to be aware of that can help direct us and not dismiss whatever is happening with us. The information you've shared here about ovarian cancer has been incredibly helpful. And I'm so grateful on behalf of all women who, you know, are at risk, who've been going through this tragedy and their families. I'm grateful for your efforts. What's your greatest hope for ovarian cancer and women's health?
Audra Moran 49:46
I would say prevention. Cure is sometimes a pejorative word in science. We would love a cure, but I don't think it's going to happen exactly that way. But what will happen is hopefully, we'll be better at Identifying. Certainly, better treatments as the next step. And then the next step after that is prevention and then maybe someday a cure.
Sarah Defeo 50:08
There's lots of opportunities to make progress on all fronts. We need better treatments for the women who do get ovarian cancer, to help them live as long and healthfully as they can. But absolutely, if we can find the women who are most likely to get ovarian cancer and stop them from getting it in the first place, it would be a huge win, and it's a very important goal.
Georgie Kovacs 50:32
Thank you again. Have a wonderful, wonderful day and greatly appreciate your time.
OCRA is hosting the Ovarian Cancer National Conference on September 29 to October 3, 2020. Check it out! Share this episode with the women in your life! Join a community of women who are committed to better health: