Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. Today, we're taking a step-by-step approach to a cancer that's relatively rare but impacts many women, often remaining in the shadows: ovarian cancer.

You might have heard it being called a silent killer, but why is that? We'll explore what ovarian cancer actually is, who it affects, and why it's so difficult to detect in its early stages.

We'll also debunk some common myths and misconceptions and go on to discuss risk factors, warning signs, and symptoms that should be brought to your healthcare professional's attention. Because we think that focusing on facts can be life-saving, and we want to equip you with the knowledge you need to take control of your health. Whether you're at risk or supporting someone who might be, this episode will be packed full of information to recognize the signs your body might be trying to tell you. We're really going to focus on practical steps you can take, like how to talk to your healthcare professional, how to be prepared for your visit, and what other tools and resources are out there to help ensure that communication with your health professional and the loved ones around you is optimal to protect your health? 

But first, let me introduce my guest, Susanne Menon. She's a nurse practitioner at Dana Farber Cancer Institute. Susanne has been a women's health nurse practitioner for 18 years, and before that, a bedside nurse, spending most of her 20-year career with the GYN oncology population. She also spent two years with the palliative care consult team at Massachusetts General Hospital, where she received specialized training in serious illness conversations and symptom management of cancer patients and other groups with complex needs. She has advanced certifications as an oncology-certified nurse and an advanced hospice and palliative care nurse. She received her master's degree from the University of Pennsylvania and recently completed her doctorate of nursing practice at Simmons University, focusing on racial disparities in the uterine cancer population. 

Welcome to the WebMD Health Discovered podcast, Susanne. We're so lucky to have you. 

Susanne Menon, NP: Thank you so much for inviting me. I am really happy to be here.

Pathak: Before we jump into our conversation about ovarian cancer, I'd love to talk about your own personal health discovery. What was your own aha moment around the work that you do with ovarian cancer and ovarian cancer awareness? 

Menon: My earliest aha moment was in my nursing school career. I actually went to nursing school to become a midwife. That was my goal, and soon into my program, I actually was taking care of a patient with ovarian cancer, and that changed my trajectory completely. I halted my midwifery program and enrolled in an internship on the GYN oncology floor. I ended up working there as a nursing student and then as a nurse at the bedside, completing my master's degree as a women's health nurse practitioner. I never completed the midwifery portion of my degree.

I think those of us who work in GYN oncology and make a career in that field can easily say that when you take care of individuals with this particular cancer, it changes your life. I remember my patients from 22 years ago. I remember their names, their faces, their voices, their stories. You get to know your patients. You laugh and cry together. You see every part of them, literally and figuratively. You see their undeniable strength and their fortitude. These are mothers and sisters, aunts, grandmothers, and it changes you. It just propels you to want to do more, and it really invigorates you to want to stay in this field and do whatever you can to help these women and these individuals.

Pathak: That is so powerful. I'd like to take a step back as we get into our conversation: what specifically should people know about ovarian cancer?

Menon: That's a good question. So when we talk about ovarian cancer, there are many different kinds, but typically, we're talking about 90 percent of ovarian cancers, and these are the cancers that form from the surface cells of the ovary and the fallopian tube. So when we talk about ovarian cancer, we could be talking about ovarian cancers or cancers of the fallopian tube and sometimes even cancers that form from the surface cells of the peritoneum. These are known widely as epithelial ovarian cancers. These are about 90 percent of all of the ovarian cancers. The most common of these are the serous type, so there are many different histologies or cell types of ovarian cancers as well, but the most common of these is the serous type. The other approximately 10 percent of ovarian cancers form from the cells inside the ovary. And these are less common. sex cord-stromal tumors or germ cell tumors. These are also ovarian cancers, but they act differently than epithelial ovarian cancers, which, when we talk about ovarian cancers, are what we're more commonly referring to.

Pathak: Can you talk a little bit about who is at higher risk for ovarian cancer? 

Menon: Ovarian cancer, in general, is quite a rare cancer. In the US, there are almost 20,000 new diagnoses each year. about 50 percent of these are in women over the age of 63. Still, about 20 percent of patients who are diagnosed with ovarian cancer, and again, those are the epithelial cell, the most common type, will have a hereditary mutation at the time of diagnosis.

When we think about these patients, we think about the BRCA mutations as being the majority of those hereditary mutations. That's about one-fifth of patients who are at higher risk for developing cancer because they have a known hereditary mutation. Not all of them are BRCA mutations. About 80 percent of patients will develop a sporadic cancer, meaning they don't have any known predisposition that we understand now. But it's still considered quite a rare cancer in terms of, compared to breast cancer or lung cancer, other cancers that we know affect women. 

The majority of individuals diagnosed in our country are white or Caucasian. We do have some data that suggests that Black or African American individuals with ovarian cancer do have lower survival rates despite having lower incidence rates. Unfortunately, we do see this racial disparity in other GYN oncology diagnoses as well. This isn't entirely understood in terms of whether this is a biological factor, something that has to do with the underlying cancer itself, or if this is socioeconomic factors. 

Pathak: In terms of what you're describing, it is a rare cancer, generally in older women, but when you do see it in a younger person, is it because of a genetic mutation?

Menon: For many patients, it may be. But again, I would say we have many patients who are on the younger side who do not have any known risk factors. I have patients who are in their 30s and 40s who do not have a genetic mutation. They do not have any of the “risk factors” that we talk about. 

Pathak: We also know that a lot of times, ovarian cancer is thought of as a silent killer. Can you describe why that is?

Menon: That phrase, the silent killer, has been used for decades. The main reason is that over 70 percent of patients with epithelial ovarian cancers, the more common type, present with advanced-stage ovarian cancer. So, at least stage 3 or even stage 4 disease. That means the cancer has spread outside of the ovary into the lymph nodes or sometimes even more distant places like the lung at the time of diagnosis.

We talk about it as the silent killer because it often presents with a variety of symptoms that may be subtle. They're there, but they may be ignored or easily explained away by other things like irritable bowel syndrome, perimenopause, or menopause. The most common of these are abdominal pain, bloating, feeling full after eating, constipation, weight gain or fullness, weight loss, shortness of breath, and bladder function changes. Who of us hasn't at one time or another said, Oh, I'm a little bit constipated, or I have some abdominal pain. Up to 80 percent of our patients who are diagnosed with advanced disease will also develop recurrent cancer after first-line treatment.

This means that even though we have really excellent treatment we can offer them upfront, their cancer is likely not curable because once that cancer recurs, there's no way to offer a cure. We can offer treatment, but it's not something that we can eradicate. These patients will require some sort of treatment for the rest of their lives.

Pathak: Are there certain things that we should bring to the attention of our healthcare providers?

Menon: When we talk to patients, it's often that these symptoms persisted. They were not explained away by any other diagnosis. Some patients have other diagnoses like Irritable Bowel Syndrome, which was diagnosed by a gastroenterologist, for example. A lot of times, these patients will say that these symptoms came on rather suddenly and that I think is more rare. When I talk to patients, and they say they knew that something was wrong. That seems to be the key phrase. They knew that there was something wrong with their body, but that they couldn't get anyone to listen to them.

So I think that the key phrase is, if you know that something is wrong, that this isn't your body behaving in its normal way, then you need to continue to speak up to your provider. 

Pathak: I'd love to shift into some myths and facts and, if we can, try to dispel some of those. So there's a group of different types of gynecologic cancers, and we are often told as women to go in for our regular pap smears. Talk a little bit about pap smears, what they are actually meant for, and the type of cancer they're meant to screen for versus ovarian cancer.

Menon: This is a pet peeve of mine. Thank you for bringing it up. Pap smears have changed our country. They are a wonderful, wonderful test. and they have almost eradicated, along with the HPV vaccine, cervical cancer in our country. They have done a fantastic job at what they were meant to do.

But pap smears are when your provider will go in and take a small sample of cells from your cervix. That is for early detection of abnormal cells of the cervix. A pap smear does not detect ovarian cancer. So it's very important to know that while the pap smear is a very important test that you should be getting with your gynecologist, they do not help in the detection of ovarian cancer. That is an important myth.

I think when you're in those stirrups, which is a really difficult appointment every year, it's hard to know what's happening and what tests are for what. You generally have two things that happen at that appointment. The pap smear is the taking of those cells, and they get sent off to a lab, and then your provider will often do what's called a bimanual exam, which is that manual exam. And that is to kind of feel around and make sure that everything feels normal. The uterus is the appropriate size. The ovaries feel normal. And that is a test that can be helpful. Again, it's not a perfect screening test for ovarian cancer, but your own personal history may be the most important part of that visit. That exam is really talking to your provider about how you're feeling, bringing any questions that you might have, any changes to your medical history, And also knowing your family history. Have there been any changes? Are you aware of any changes to your family's genetic history? Is there any history of ovarian cancer? Is there any history of breast cancer in your family? Is there any new history of colon cancer or uterine cancer? All of these things are probably more important to bring to that provider visit, in terms of your ovarian cancer risk, than that pap smear.

So don't rely just on what your doctor can offer you. A lot of it is what you can offer to your provider at that visit.

Pathak: Thank you. That's really helpful. A thought that comes to me whenever I'm talking to other women or patients as well is that we just are not as familiar with our anatomy as women and the various organs that we need to be thinking about. I think that some of that comes from stigma. Some of that comes from what you're describing. These appointments can be really uncomfortable. They can feel very invasive, and you don't always know what is being evaluated. 

Just a basic level of understanding of what makes up GYN anatomy, from the ovary to the fallopian tube, the uterus, and the cervix. What's the difference between that and the vagina, the vulva?

Menon: I think that's a great point, too. I think now is the time, and I think it's easy to find pictures online. You can just Google the female reproductive system and get a picture. Sometimes, you may go into the office, and there'll be a little 3D plastic sculpture in it. If you have the time to look at that, I encourage everyone to look at it. Definitely know your anatomy. This can be really uncomfortable for some people, even saying the words out loud. Many of us were not allowed to say the words. They were dirty words when we were kids, or we had nicknames for when we were kids because we weren't even allowed to say the words out loud.

So it may be really uncomfortable to even go into the office and say, I have this issue with my vulva. Some people have never said the word out loud or don't know the difference between their vagina and their vulva. So even just knowing the difference between these body parts is really, really important. But in order to participate in your visit, it's so helpful if you know your anatomy. Be aware of your family history, and really be able to take part in these visits. 

Pathak: We've talked a little bit about risk factors and warning signs. Is there anything else that you'd like to dispel when it comes to myths around risk factors or warning signs? 

Menon: One thing we know is that screening is something that everyone would feel more comfortable taking part in. I have a lot of people ask me about the CA-125, which is a serum marker, a blood test, or about ultrasounds. Unfortunately, right now, we don't have good screening tools that are recommended for individuals of no increased risk. So those individuals who do not have a known family history or a known genetic risk, there is no recommended screening. So, while I know that it is very, very scary to hear about a cancer, like ovarian cancer, that can be very, very serious if it's diagnosed at an advanced stage, right now, everything we know about ovarian cancer does not point toward going to your provider every year and demanding to have an ultrasound or a CT scan or a CA-125 serum marker to help, “catch it early.” These screening tools have not been shown to be helpful for individuals of average risk, those of us who do not have genetic mutations or hereditary mutations that put us at increased risk.

Pathak: I think that's really such an important point that you're making. And I think important for women to know there's a difference between screening and then going in and getting some of these tests to potentially diagnose something. So if there are signs, symptoms, or some concerns that you have, that's a different story. When we're talking about screening, we're just talking about no symptoms and none of the sort of higher risk profile that you describe. 

Can you talk a little bit about the survival rate? You hear about ovarian cancer and certain types of cancer as much more aggressive and much more dangerous. Tell us a little bit about what we know now or what our current treatment regimen does for the survival rate.

Menon: First of all, it's such a difficult thing to talk about. And for anyone who's listening to this, if there's someone who is newly diagnosed or has a family member who's newly diagnosed or someone who's just hearing this and is worried or hearing this, it sounds very scary. It sounds very dire. I've been working in this field for 20 years, and I have to say that there's so much that has changed in the last 20 years, so many drugs that have been developed, and it has been incredible to see the amount of science that has come out in the last 20 years. The drugs that we have available now and how we have made it possible for patients to live longer and have quality of life while they're living longer.

We have, not just chemotherapy. We have targeted treatment. We have a new class of drugs called PARP inhibitors. We have a new class of drugs called antibody-drug conjugates. We're using precision medicine now in a way that we did not use when I first became a nurse practitioner 18 years ago. We didn't have the ability to test people's tumors themselves for proteins and then use those proteins to direct treatment. I mean, really, people are getting individualized medicine now in a way that looks at them as a person and then says, we're going to treat you based on how your tumor is behaving and not just as any person that has ovarian cancer.

It really is exciting. I use that word very carefully because I'm very aware of all of my patients who have been battling this cancer for many, many, many years and how difficult it is for them to be kind of standing in the muck of it right now. It's a really, really difficult cancer to live with.

One other thing that we do know, and we do have data to support this, and multiple studies have shown this, is that individuals who get treated surgically with a GYN oncologist, as opposed to a gynecologist, do have better outcomes. So, if you do get a diagnosis of ovarian cancer, it's very important to choose your provider carefully.

Not only your surgeon, in terms of your outcomes, but also just in terms of this is someone that you are going to be partnering with to make life-altering decisions. So just make sure that you feel that you can communicate with that person. Make sure that you have, right at the beginning, either a family member or close friend with you who can partner with you, who can hear all of the things that you're going to have to hear. It is going to be white noise at all of these appointments. You want someone who can just be by your side and help you kind of rehash all of the information and help you make decisions. It's a lot, and you're going to need the support. Your medical team should be part of it, but you're going to need the social support, also.

Pathak: You've really guided us through understanding so much more about ovarian cancer. I'd love to give you the floor to close the episode with any bite-sized action items or pieces of information that women can take away from our conversation today. 

Menon: I think that there is a reason to be optimistic about the science that is coming out and everything that is coming down the pike in terms of research. This can be a really challenging cancer to face. I don't want to pretend that it is an easy diagnosis, but the most important thing, if I think there are takeaways, is to research your medical team. Make sure that you feel comfortable with who you are seeing as a team. You should feel held by your medical team. Asking questions and feeling like you are engaged in shared decision-making. If you ever needed someone to make decisions for you, I would pick that person early. If you're not someone who's ever been diagnosed with cancer, but you're just worried about screening for ovarian cancer, this is a very, very rare cancer, even if you know people who have it. The biggest risk is certainly to those who have a family history or who have a familial or genetic mutation that puts them at risk. But if you have symptoms that concern you: abdominal pain, bowel changes, bloating, make sure your voice is heard. 

Pathak: Thank you so much for being with us today, Susanne. We really appreciate your time and this conversation. 

We've talked with Susanne Menon about ovarian cancer. We unpacked why ovarian cancer is thought of as a silent killer. We've also explored some of the myths surrounding screening, prevention, and highlighted the key risk factors and warning signs that shouldn't be ignored. We emphasize the importance of understanding our reproductive anatomy, being aware of our own medical and family history, and preparing for our healthcare visits with proactive steps: bringing questions, using patient portals, and embracing shared decision-making with your healthcare team.

We have to remember that knowledge is power, and being informed is the first step toward advocating for our health. To find out more information about Susanne and her work, we'll have her information linked in our show notes.

Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered podcast.