What to Know Down Below™
Welcome to What to Know Down Below™ by Tina’s Wish! We’re here to empower you with the knowledge and tools you need to advocate for your own gynecologic health.
Knowledge is power, and we encourage everyone to join us in learning more about what you need to know, down below!
What to Know Down Below™
Be Heard: How to Advocate for Yourself as a Patient
Be Heard: How Advocate for Yourself as a Patient
Featuring: Elle Simone Scott, Celebrity Chef and Ovarian Cancer Survivor panelists Dr. Leslie Boyd, Gynecologic Oncologist, NYU Langone Perlmutter Cancer Center and Dr. Lindsay Kuroki, Gynecologic Oncologist, Washington University in St. Louis School of Medicine
To learn more about gynecologic health, visit tinaswish.org/whattoknow.
Welcome to What To Know Down Below by Tina's Wish. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.
Speaker 2:Hi everyone. My name is El Simone Scott. I'm executive editor and food stylist at America's Test Kitchen and also an ovarian cancer thriver. For those of you who are new here, Tina's Wish is dedicated to funding groundbreaking research for the early detection and prevention of ovarian cancer, as well as educating women about their gynecologic health. This is an inclusive journey, and we're honored to have all of you here with us. Before I welcome our amazing panelists, I wanted to share more about my own journey and why this program is so important to me. I was diagnosed in 2016 with ovarian cancer for at least two years. Prior to that, I was experiencing a lot of pain and a lot of discomfort, and experienced also two misdiagnoses . The only reason I have survived this long is because I was a fierce advocate for myself and would not relent unless I got the answers that made sense to me. And that's when I got in 2016 at Dana-Farber Cancer Center. Now I'm pleased to welcome and introduce our panelist. We have Dr. Leslie Boyd, a gynecologic oncologist and director of gynecologic oncology at NYU Langone's Pearl Mutter Center. We also have Dr. Lindsay Roki , a gynecologic oncologist and associate fellowship director of gynecologic oncology at Washington University. I'm excited to have both of you here. Dr. Boyd, let's start with you. I know you heard Tina's wish was covering this topic. You were eager to speak. Why are you passionate about self-advocacy and how would you define self-advocacy?
Speaker 3:Hi , thanks for the great question. Um, I do feel passionate about these issues, so I was very excited to be here today and I wanna thank the Tina's wish team again for inviting me. Um, I think self-advocacy has a lot of different meanings to different people, but the way I think about it is patients need to be in control of their own healthcare . And so self-advocacy means being confident enough to advocate for , um, what they need to maximize their own health and for themselves really, and often for their families.
Speaker 2:Very true, very true. Dr. Roki , do you have anything to add and , and why are you passionate about this topic?
Speaker 4:Yeah, thank you. I really think women need to understand they have , uh, a voice and that voice is valuable. And one of the meaningful things about this opportunity to talk today is to help shed light on how we can allow individuals , um, to engage in our healthcare teams so that together we could help make best decisions on behalf of our patients.
Speaker 2:Mm-hmm <affirmative> . I think I've grew up feeling like having conversations about our bodies as women was slightly taboo. You know, it was almost something that you only spoke about in, in like company, right? With other women. And I don't think that that left us feeling very empowered to go into , um, a doctor's office or a hospital and say how exactly we're feeling. So , um, I'm , I'm very excited to have this conversation, but I think the alternative to that though is that women feel often empowered in many other spaces, but not so much so when it comes to healthcare. So I'm excited to hear what you all have to say about this today. Dr. Boyd. How can women, not just those facing cancer, educate themselves in relation to their gynecologic health and in turn become better advocates for their health ?
Speaker 3:That's a really good question. I , I think, oh , it goes a little bit back to what you were talking about, is that we have to be more comfortable with our own bodies. And and that starts from, from things, you know, really early on in our, in our upbringing, right? Not everyone is comfortable even thinking about gynecologic organs, right? So at the beginning of all of my , uh, you know, my discussions with my patients, I, I bring kind of a, a basic visual guide, and I'm always amazed at, at how many, you know , educated, smart women are really not just not aware of our , their own anatomy, right? And so, you know, we are in a, in a such, in an information world now, and so there are any number of ways to just Google what's going on, right? And I think part of it is just getting over that sense of hesitancy , um, and kind of prudishness that some of us are brought up with, right? That we don't talk about this, but if we can't talk about this to ourselves, kind of behind closed doors and with our friends, you know, our girlfriends, then we're certainly not gonna be comfortable talking about it with our physicians potentially. So I think it starts there. I think we need to get more comfortable talking about GYN cancer and, and GYN issues, right? And I think it goes beyond, you know, we're used to talking about our periods, but it goes well beyond that, right? So I think we just have to be com more comfortable with our bodies.
Speaker 4:Um, organs are not something that, as an individual you would know where they are. You might not know when you're getting an exam done, if , um, people can feel them or not. And so I think one of the interesting ways that people can learn more about their bodies , um, and to start speaking freely about , um, their vaginas, the cervix, the uterus, the ovaries, the fallopian tubes, it's like when you are getting an exam done, just like as if you were getting your breast exam done to learn about these tissues, to learn what it feels like when someone is touching the cervix, or , um, to, honestly, a lot of times for our adolescent and pediatric gynecology patients , um, I was trained by a really amazing mentor who would bring out a mirror and show them exactly what the areas that we were going to examine together. So it's not threatening. Um, and I think doing that in together with your physician can be very enlightening because that's an opportunity where you can ask questions about, you know, organs and tissues that you just normally wouldn't. It's not common sense to know.
Speaker 2:Ah , so true. Hopefully we're, we're bringing through another generation of more confident, comfortable young women , um, who will lead that charge. Um, Dr. Roki , I know you see patients who are facing a cancer diagnosis, but what important questions do you think all women should be asking their gynecologist or internist at their routine visits?
Speaker 4:Yeah, that's a good question. Um, you know, oftentimes patients, they might just be seeing them as a scheduled, you know, annual exam. So one opportunity in a year to have face-to-face time with their physician . So I think it's an opportunity to ask, actually at the very start of the conversation , um, any problems or any symptoms, any concerns that they , uh, may be experiencing that are new from their baseline. Because I think oftentimes, you know, patients are coming in and expecting maybe the physician to like, lead the discussion or, or they're expecting that the physician has an agenda already lined up. And to make sure we prioritize what patients , um, need to , um, tell us their concerns. A lot of times we ask them to write it on a piece of paper, but it might just be a quick glance and then, you know, a missed opportunity. So I would say first and foremost , um, you know, ask about like, what are we gonna be doing today? But then, you know, speak up and say, one of the things that I'd like to talk about is this new problem I'm having, and I'm really worried about it, so that the physician could then make sure there's enough time allotted for that , um, conversation to evolve. I think the other thing , um, that's really important is just a simple question of like, what can I do to improve my health? Sometimes we don't even know , um, what's expected of us. And I think asking those questions, which sound very basic, could be an opportunity to initiate the conversation and gain advice from the physician , um, about what they perceive are their risk factors available screening , um, that they're eligible for , um, to reduce their risks and to improve , um, their lives.
Speaker 2:Wow. You know, throughout my cancel journey, I got some good advice, right? One, one was, if you experience anything for more than two weeks, you should mention it to your doctor, right? That's something that if, if I was never told, I probably would not have thought of, but I also know that sometimes when we come in, we we're dealing with so many different side effects from so many different things. We don't know, like what's problematic versus what's natural. And sometimes we do feel, we feel silly like, am I being redundant? Am I complaining about something that's small or is that, is it small? You know? And then I know I tend to think of like the grand scheme. I'm like, well, I mean, I'm certainly not in as bad a position or as I was a year ago, or, you know, things could be worse. Maybe I shouldn't be complaining about this little thing. So it's very comforting to hear you both say, you know, that as our care providers, you want us to speak up more and you want us to even say the little things, even if it feels little to us. That is very, very comforting. I do it anyway. I'm pretty sure I bombarded my team with all the little , like, my toe has been hurting for seven days, <laugh> . So, you know, I , I don't miss a beat with them. I let you know, but I have, I've always been a very fierce advocate. I was raised to always advocate for myself in every way. So I , you know, I recognize everyone doesn't have that privilege. And so I wanna say from both sides, thank you for giving us that green light to do so. Um, and , and this question is kind of a second part to that first question, but what can women do if they go to their doctor and do not feel they're being heard and or that they're concerns are not being taken seriously? I was misdiagnosed twice. What would you recommend to someone possibly having this experience or any other that is related?
Speaker 4:You know, as a GY oncologist, it's , um, very likely that I might be the third or fourth physician that this patient is seen. And I think in part of that, there's a lot of relief in finally finding a specialist who will then take them on as a patient and gain more trust , um, to develop their management , um, for cancer. But I also think it's such an overwhelming feeling, and there's , um, oftentimes I think this , the scenario you paint is very common. That there's maybe , um, an opportunity where the patient could bring a support person because not everything , um, is gonna be displayed in a way that would just make sense in that moment. Maybe to have a support person there, a friend, a family member , um, someone that would be reliable and supportive to maybe ask a question , um, when, you know, patients are feeling overwhelmed. And I think the other thing is that it's expected that we can't cover everything. And we, in , I would suggest like writing things down even after, and then even if you didn't have a support person with you, then asking for another appointment, asking for more time. Because I think oftentimes it's a matter of making sure our communication is, is as clear as it can be. But if at the end of the day you give it a try, it all boils down to trust. And I think, you know, one's size doesn't fit all. And I think if you really don't feel that gut feeling of trust with your physician team , um, then it's also reasonable to get another opinion as well.
Speaker 2:Well, thank you. I'm, I'm glad you said that because that , that kind of rolls right into my very next question for you, Dr. Boyd. Um, at the time of a gynecologic cancer diagnosis, what questions should a patient be asking and, and how can patients learn more about their diagnosis from reliable sources, especially with all the misinformation on the internet, and sometimes even from well-meaning friends, you know, like, what questions should we be asking and what sources should we be seeking for
Speaker 3:Answers ? Yes. So , um, again, great, great question. This also goes back to what Dr. Roki said, by all means, when you are going in to speak to your physician about a new cancer diagnosis, please bring a friend or a family member for support, because there's so much information that needs to be imparted, and it's really likely that you'll be overwhelmed. You know, we, we know it's physicians. As soon as we say the word cancer, pretty much everything out else gets tuned out. And, and it's really hard to focus because, you know, your, your brain just starts spinning away , uh, completely, understandably so, please bring a friend. Um, there is so much to, to find out what is the stage of the cancer , um, what are the grades of the cells? Um, what specific cancer type is it , uh, what's the pri primary treatment that you suggest? Are there alternatives to this? Um, eventually you're gonna wanna hear about prognosis, like, how, how am I going to do, how is this going to affect my life? But, but you may not be ready for that much information at , at the initial , uh, discussion. Um, there are good , um, excellent websites actually available. Um, the American Cancer Society keeps an updated website that I often refer patients to , um, the National Institutes of Health, PDQ also is an excellent resource , um, re up to date and reliable. I, I caution everyone about randomly googling on the internet, and I remind them that the internet is for people who are really happy and really sad. <laugh>, It's a bit of an oversimplification, but most people are kind of , it's kind of in the middle, are just kind of going on with their own life, and they don't have time to post as much. Right? So, so you're often getting extremes of , of the, of the situations. And that may not be helpful. And in, in regards to, well-meaning friends, you know, everyone knows someone who had stage four B cancer and it was miracle cured by sunlight, you know, I mean, I'm , I'm being facetious, but, but, but we've all heard this and I think people, people want to be helpful, but they are rarely, it's say , not everyone in your circle is capable of true empathy. And so, one thing I tell my patients all the time is figure out who you need to keep in your circle and then designate one of those people for all the others, right? And you tell them, you know, so, so you can't, 'cause you , you don't want to be the clearing house of misinformation. It's not, it's not your job. And you've got better things to do in this really challenging time. So, so, absolutely . So I, I try to manage that from the beginning because it , it , it becomes a significant , uh, source of distress for a lot of my patients.
Speaker 2:It does. I've, I mean, I've learned not to go down the Google MD rabbit hole , um, but I did , uh, join some support groups. Um , the National Ovarian Cancer Coalition is a group that I'm a , a huge , um, supporter of, and also volunteer, right? Volunteerism always feels very nice because you get to be with people who share your experiences , um, and so many others. But , uh, I definitely have found , um, getting in touch with support groups has been helpful for not only my emotional health, but my physical health. There are lots of resources behind those groups. They offer meals that can be delivered to your home. Um, care bags that can go with you to treatment, someone who can just support you and talk you through. It's amazing. I think getting support is always really good. And it also helps when your wellbeing friends, well-meaning friends, say things that are kind of a little off, you take it a little lighter 'cause you, you have a better source, it doesn't really throw you off. So , um, that's, that's really great. Thank you so much for that. Um, Dr. Roki , I wanna ask you , um, someone facing a gynecologic cancer or other life-threatening disease can be experiencing a very scary time. What advice do you give your patients as they begin their treatment journey and decision making ?
Speaker 4:Yeah, you know, I think , um, you sort of nailed the key word of that this is a journey. It, it certainly is a life-changing , um, not a sprint. It's more of a marathon. And I first and foremost tell my patients that I'm in it, I'm in it with them. Um, but I certainly acknowledge that it is a stressful time. And sometimes we'll be faced with decisions that might not have an obvious right answer, but the right answer would be what is best for the patient? And so , um, I think especially those , um, patients that I feel like are really struggling , um, to grasp kind of even next steps and are having a lot of anxiety and fear about going through this journey with me. Um, I really start by just taking a step back and just acknowledging everything that they've been through up until this point. 'cause it hasn't been easy and it's been all consolidated and probably , um, on the order of, you know, several months that all this workup has been done. Um, but acknowledging three important time points that I believe bring on the most stress. And the first is when they have already , um, first heard about there may be the possibility of cancer, and they're going through the whole workup of testing and imaging biopsies even. Um, and just that wait time to get an answer is really stressful. The second time that I think really hits hard for patients is that once they have the diagnosis and then they're right about to start treatments, just the anticipation of like, am I gonna feel okay, am I gonna come out of this? Okay , um, what does the day to day look like for me? What impact does it have on my job, my family? Um, and just the, the amount of, you know, mental capacity to be able to put one foot in front of the other I think is very hard when , when people start treatments. And then ironically, that third point that I , um, really emphasize for patients , uh, is actually when they're done with treatment. And then for many that we're able to celebrate and say that their scan is clean and they have no evidence of cancer, and they , um, transition into survivorship. That I think is also a really , um, ironic time when people feel like they should be so excited and really happy. And in fact, they might be very scared. And , um, you know, appointments tend to get spaced out at that time. You don't have that consistency in seeing your oncologist. Um, so right at the beginning, I really try to establish trust, let the, my patients know I'm in it with them through this journey. But that I'll always be honest with them. I will be honest with them when we're gaining results that we hope to gain , um, through treatments. But I always tell them at the beginning, I will be honest with them also, when I think , um, outcomes are not as what we had hoped for, and that we need to take a step back and think about the goals of our care together.
Speaker 2:That's a very honest , um, answer. Uh , Dr. Roki , thank you for that. And we, we appreciate , um, the thoughtfulness and , and how you approach our care and every step that we go through along the way, that was very intricate and much appreciated. Thank you so much, Dr. Boyd, one more question for you. When do you think women should look for when selecting a gynecologist? And if a woman is diagnosed with cancer, what qualities do you think she should look for in a gynecologic oncologist?
Speaker 3:Alright . Okay. Um, so I think you should be it when you're looking for a gynecologist, you know, these are qualities you want in , in your general practitioner as well. So first and foremost, I would suggest that people look at , um, finding a board certified gynecologist, right? So there are minimum standards set up by , um, the College of Obstetrics and gynecology. And if you know that your gynecologist is board certified , then they meet those minimum standards, right ? And that's in terms of clinical knowledge , um, and ethics actually. So that's a good first step. It's just the first step after that, I would look for recommendations from friends and from your general practitioner, and then you're going to look for the right fit. So again, things that we were talking about earlier, you wanna make sure someone has kind of the clinical chops to take care of you , um, but also is inclined to listen, right? So finding someone who's going to listen to you to take your, all of your issues seriously , um, and to really spend the time you need. So, not always easy to find, but certainly worth, worth looking for. I will say they , they , they've done studies those , um, Google and Yelp reviews are actually mm-hmm <affirmative> . Often not far off. So you can use those for , you know, as a first pass, right ? If you see somebody with one star, that's probably not good, right? <laugh> probably not . So , um, and then if you have cancer, a gynecologic cancer, it is really important to look for a gynecologic oncologist. So gynecologic oncologists have specific training for women with GYN cancers that involves surgical training as well as training in the chemotherapy re required for treating these diseases. So finding a gynecologic oncologist should be relatively easy in major urban center centers. It's a bit harder in rural areas. Um, again, you want similar qualities in a gynecologic oncologist, we, you know, we are also board certified . Again, we're providing minimum standards and kind of what we do. And then, and then after that, really want someone with who's the right fit. Um, and, and you are , you are usually referred to a g oncologist by either your general gynecologist or by your primary doctor . So you can ask them, you know , if they say, all right , you can look, go to these three people, say to them , Hey, you know, me, all these three people, who do you think is the right fit for me? And kind of try to tailor it from that. We all also have websites and , and , and other ways that you can try to get to know us in a, in a kind of quick way. And I , you know, thankfully my institution has a video that I shot actually, and I'm, I'm surprised at how often a new patient will say to me, oh, I saw your video and I knew we would get on, which, and I , you know, you knew you were , I hated shooting the video. It was the most awkward thing ever, but, but it worked, right? So it just, anything that can give you a sense of what someone's really like, just so that you, you know , you have a sense of is this someone I'm gonna be able to bond with in this major event in my life?
Speaker 2:Yeah. I was referred to my , um, gynecologic oncologist from my gynecologist. They went to , um, Harvard together, and I , either she was his mentor or he was her mentor, but they had very close, close working relationship, and she felt extremely confident. And , um, that was actually good for more than just having a good referral. But it also helped my process to happen more quickly. You know, I didn't wait a lot of time between , um, having a a , an ultrasound and knowing that I had a cancer that had ca I had a , a cyst that had cancerous characteristics and then seeing the oncologist that literally was less than 15 days. So , um, I was really pleased with that. And , uh, I use doc , doc , I use , you know, all the, the other apps where I can read reviews, you know, like, I think a lot of it's lost on a lot of people. You don't have to take the very first physician that's in the, in the catalog that comes from your insurance provider. You can do your own research, you can ask friends. And I actually ended up finding my gynecologist through my coworkers at my brand new job , uh, when I moved here to Boston. And , um, I was searching at that time before I knew , uh, that I was going to be , um, dealing with ovarian cancer. I wanted a doctor who specialized in women who were over 40 who wanted to have children. So I based it upon my goals, you know , like what I wanted for my life. And , and that was also , um, very helpful.
Speaker 3:What , can I one more point, el before we move on. Um, I would make sure that whoever you decide to go with, make sure that they have enough experience in whatever it is you are you need. So, for example, if you need ovarian cancer surgery, make sure that that's something that they're comfortable with and that they do often enough, because volume does matter.
Speaker 2:Yes, it does. That's excellent advice. Thank you so much , uh, both of you, for really answering these questions , um, so deeply and so thoroughly for us. I think right now we are gonna , we're gonna take some questions from the audience. Uh, they've been coming in swiftly, so I have a couple here already. Um, the first question is, what do you do if a doctor dissuades you from seeking a second opinion? What if we make them mad? How do we, what do we do?
Speaker 3:Yeah. You know, I, I personally think that's a pretty big red flag. So if somebody is really, again, if someone's looking for a fourth and fifth opinion, then to me that's, that's, that's a form of kind of denial and a wasting time. But, but a second opinion is completely reasonable. Um, and anyone who's really making you feel uncomfortable about getting one i that , that would , that would make me wanna get one a lot faster. <laugh> Yeah , me too. I will say that I, I do feel for patients who are geographically restricted, right? So I happen to practice in New York, there are many geo wonderful Joann oncologists here, so people can take their pick. But if you live in a rural area and you don't have a choice, well then, you know, second opinion isn't the answer. It's really advocating more forcefully for yourself in the practice that you're in and being honest with your provider and saying, Hey, you know, I'm not feeling heard in this space. And I will say that most physicians, just like most human beings, when you point out in an , you know, a , a need respond with empathy, right? And I would hope that a physician would be the same, right? So if you're not getting what you need from your doctor and you don't have a choice and must stay there, then go to them in an honest, open way. Explain what you need, and I suspect you will get back , um, more than you expected.
Speaker 2:I think that's great advice. And , um, in the , in the culinary world, we say too many cooks spoil the pot. And in this case, too many oncologists make life sweeter. So <laugh> , we'll go with that. Alright , one last question really quickly. How can caregivers be better advocates for their loved ones?
Speaker 3:I really like that question. Um, I , I , I think caregivers, you know , and I I , caregivers are so important to our patients' journeys and lives. And so I'm so thankful, you know, for, you know, I, I consider this a team. You know, we are a team together, and it's not just me and the patient, but it's certainly their family and their support. Um, but you know, the, the one , one thing that I often see is that sometimes the team members, instead of just listening, they're trying to, they , they wanna fix everything and not everything can be fixed. And, and that's, you know, one of the hardest parts of all of this. And I think being able to really listen is, is priceless, and it's not easy. But if they can be present with their loved one and really listen to what they need , um, that's, that's kind of the most important gift they can give.
Speaker 2:Wonderful. That was, that's really, really great advice to caregivers and, and , uh, lots of hugs. We appreciate those, those hugs. Um, and don't make it about you. That's my other really solid advice, right? Don't make it about you. Uh, well now it's time to wrap up. Uh, a huge thank you , um, to you, Dr. Boyd, and to you, Dr. Roki . We really truly appreciate your time and all that you do to improve the lives of women and our families. We thank you so much and a big thank you to all of you for tuning in and for your incredible support of Tina's Wish and our other initiatives. Be well, be well and take care and be your own best fierce advocate.
Speaker 1:For more information about gynecologic health, visit tina's wish.org/what to know . That's tina's wish.org/w H-A-T-T-O-K-N-O-W . And like, follow or subscribe wherever you listen to your favorite podcasts.