Educated Patient® Webinar: Coping with Metastatic Breast Cancer and Advocating for Others


Hear from our 2021 Metastatic Breast Cancer Heroes™ award winners as they discuss their dedication to the field and how to drive attention and awareness to metastatic disease, how patients can self-advocate and find the right support and resources and advancing diversity and inclusion in metastatic breast cancer.

Hear from our 2021 Metastatic Breast Cancer Heroes™ award winners as they discuss their dedication to the field and how to drive attention and awareness to metastatic disease, how patients can self-advocate and find the right support and resources and advancing diversity and inclusion in metastatic breast cancer.


Ryan McDonald: Hello, everyone, and welcome to today’s live broadcast, an “Educated Patient® Webinar: Coping with Metastatic Breast Cancer and Advocating for Others." I am Ryan McDonald, Associate Editorial Director of CURE. We are pleased to bring you this webcast presented by CURE and sponsored by Lilly Oncology. There are just a few important announcements before we begin. We encourage you to ask questions throughout the event by typing and submitting the questions in the Q&A box that you see on the screen. Tomorrow, you will receive a survey via email asking questions regarding today’s broadcast. As a thank you for watching the full webinar and completing the survey, you will be entered to a chance to win a Visa gift card. And now I would like to introduce you to today's panelists and 2021 Metastatic Breast Cancer Heroes. First, Dr. Bhuvaneswari Ramaswamy, a Medical Oncology Specialist at The Ohio State University Comprehensive Cancer Center, Founder of the Living Well with Advanced Breast Cancer Clinic, and a metastatic breast cancer survivor. Dian 'CJ' Corneliussen, Founder, Director Emeritus, and Past President of METAvivor. And Stephanie Walker, a patient advocate, retired nurse, and volunteer at Living Beyond Breast Cancer. Now, before we begin today, I would like to take a minute to remember this year’s heroes and nominees that are no longer with us. And just wanted to say thank you again for all of this year's heroes and nominees for everything that they have done in the metastatic breast cancer space. To start, Dr. Ramaswamy, when I ask you – you have spent your career caring for patients with breast cancer and have also been living with metastatic breast cancer. How did your experience as a provider and patient lead you to advocate for others [00:03:00] and then subsequently found the Living Well with Advanced Breast Cancer Clinic?

Dr. Bhuvaneswari Ramaswamy: Thank you for that question. Let me look at that first as a provider, as a breast medical oncologist because that's what I've been doing since almost 2002. Really over the years we have started to understand the needs of a survivor. So, breast cancer survivor are those people whose cancers are cured and really there is no evidence of disease and of course the hope is that they will always remain a survivor and never get the cancer back. And over the years a lot of work has been done for them to understand their needs, to address their needs and support them. That’s great which continues to be done, but what that I found is that we don't do enough for those who live with cancer, and I am talking specifically about Metastatic Breast Cancer. One really positive aspect of which is that there are many who live for many years, which is absolutely fabulous. We want that to of course extend and hopefully find a cure. But we don't address their needs because it’s so different to have to live with the cancer. That worry that anytime it could drop and things could get really worse you might not have another treatment and how you feel with these treatments. It’s just so much stuff and we wanted to address that in this clinic. Educate them, increase awareness, identify their support of care. But really, after I developed metastatic disease and I've been dealing with this two to three years now, I really understand that this is so much better. I mean I thought I understood but I don't think I understood as well as when now I know how it is to actually live with the cancer. And even though things are going well and I am able to work well with treatments, I know anytime anything can change. So, I think I understand the isolation my patients felt so much better than I did before and I am able to do a better job in the clinic and really address it better. This is something our patients will come to our clinic and really, really enjoy the knowledge and the awareness they receive in that clinic space.

Ryan McDonald: Yes. Perfect. Thank you everyone for your patience there on waiting for me to get back. To start, Stephanie, you mentioned, or your nominator at least wrote in your essay that instead of being a victim of cancer, you have become cancer’s enemy. What has led you to dedicate yourself to break down these barriers to end disparities in the metastatic breast cancer community?

Stephanie Walker: Well, I think it started when I had to look for resources financially and other kind of resources. This was like three years into my diagnosis, and I realized that I was having such a hard time finding resources that I needed on reaching out with people. And it was kind of funny because I thought maybe I am a fairly educated woman and a nurse at that time, how hard it was to find these resources and I am trying to figure out that if I am having this trouble finding resources, I am sure that other people are having just as much and maybe are not as diligent and want to just give up. So, they miss a lot. So, talking to people in my community and the community cancer center here I realized that there are resources. I found a lot and made a list. Now, what I do is I store that with anybody who wants that list, I try my best to keep it up to date, but that never is possible keeping a perfect list. But I live in an area that is under serve and financially challenged. So, it's important to be able to walk into people's shoes in which the community kind of lives. So, that kind of started me into advocating for women that had less resources and knowledge barrier was there as well. So, I must be able to help that as well here where I live.

Ryan McDonald: Ok. For CJ, you have previously expressed that once you were diagnosed with metastatic disease, your care team pretty much recommended avoiding breast cancer support groups. What was that like to hear that advice, and how did that make you want to advocate for your peers?

Dian “CJ” Corneliussen: Well actually, it wasn't an advice. They told me, do not attend [00:09:00] breast cancer support groups. And they said, if you do go, for God's sake, don't tell anybody you are metastatic. So, I was forbidden support actually. What had me was they had an abundant support for primary breast cancer patients, they had absolutely nothing for the people who are diagnosed with worst diagnosis, who were told they were going to die and I was really outraged by that. Since I am a very take charge person, I said to myself, if they don't have one, I am going to form one myself and so I ask them will you put me in touch with some of their metastatic patients. They did, they put me in touch with three, but in two months all three had died. So, that was not a great beginning, but I kept looking. I developed a program that was a peer to peer support. I felt the others, non-metastatic patients really didn't have a good handle on what metastatic patients needed. And so peer to peer support, we help each other and within six months 24 people had joined my group. So, it grew fast and other people wanted to know how they could support and build a similar programs in their areas. So we got the full training program that's free and it would work for any person with any metastatic cancer. It doesn't have to be metastatic breast cancer. But it's patients helping and advising each other. Everybody is on different drugs and treatments, they have different ideas, they have different ways of handling family situations, handling the job market, if they are still working, and we can all handle all of them by sharing our experiences and what has worked for us, we can help each other. And we now have over a hundred of those nationwide and they are also now, some of them are in Canada as well. The program really caught on and we always have two leaders in each group. We have two so that somebody can backup the other and step in quickly if they pass away. It's actually been quite successful.

Ryan McDonald: Dr. Ramaswamy, you've been an oncologist for quite some time and working in this field. When you get your diagnosis, how did that kind of alter how you viewed your patients or worked in this field?

Dr. Bhuvaneswari Ramaswamy: The day I heard it, I think that was the day we actually had a research advocacy meeting with patients. I got my diagnosis and I had to go meet with patients. We were talking about advocacy for metastatic breast cancer. For a little bit, it was surreal because this is what you are dealing with and now you are on both sides of the aisle, so it was a bit surreal. I think there are two things. One aspect of it that I am really grateful [00:12:00] is that when I walk into my patient's room, I forget that I am a patient, and I also have similar problems whether whatever meds and whatever areas what treatments, I am on the same thing. I don't know how and why which I am so grateful for I am able to completely forget and be myself and be the physician to provide care. But, at the same time, when they talk about their emotional journey and the frustration to keep on doing these treatments, the uncertainties, although I understood before, like outside, now my understanding and the words I use without my own knowledge it's coming from my experience so it comes naturally, and I can see the light that comes in their eyes. So, clearly, my experience is helping me to be a better comforter, better supporter in their emotional aspects and I think I articulate what they are feeling much better than I did before. So, I am grateful for that opportunity to be a better provider but I think as a provider to do the best for my patient and isolate myself out of that situation, I am still able to do it and I will only be an oncologist until I can do that. The day I constantly think about myself as I walk in and put my, I shouldn't do this position and I am not there at all for which I am grateful for.

Ryan McDonald: And, as we are talking about metastatic disease, one thing a lot of people talk about with breast cancer is all of this awareness, all of this media attention, you see everything out there, but you don't always hear about is metastatic disease. So, Stephanie, in your opinion, as an advocate what still needs to be done to kind of get people familiar with what is going on in this disease?

Stephanie Walker: I don't know if there is any one thing that would drive attention to the disease. But in underserved areas, in breast cancer in general, I think there needs to be, we need to shorten the gap between early stages and metastatic patients. That gap needs to be shortened. Right now, that gap is, I have stage zero to three and A, B, C, D or whatever and once I finish my treatment regimen, I'm finished, I'm done. Hallelujah. I never have to go this way again. But with us, I got to start a new treatment regimen or just let this one go little bit longer than the first one and don't let be my last one, hallelujah. So, we need to shorten that gap. It's not that we want to tell early stages, metastatic breast cancer would kill you. We are living with it now every day. So, education I think to the early stages [00:15:00] that you are not totally out of the woods, but not to instill fear. I think that would help as well. And in my population, where there is the inequities, I think that we need to start in the communities where these problems are and send people that looks like the community obviously to educate them on breast health of whether it be early stage or metastatic disease and follow-up care and also for the healthcare providers to listen. Get rid of the implicit and explicit biases that you have, that happened to me. You walk in and you see me, I'm automatically weak, a black woman, older, we are not going to be able to keep her comfortable and we'll be done and save some money. But you don't realize where I am in my life; you don't know anything about my life; you don't know who I am and what kind of degree that I have, or if I have one. So, to assume by what one looks like is wrong, also to assume I live in zip code that is poor, that's been red-lined or something is wrong. So, I think that we need to listen. Healthcare providers need to listen to us. If there is someone under the age of 40, with triple negative breast cancers for black women, young women. These young women know their bodies or they are starting to know their bodies and when they have a problem, they are told to go the healthcare provider. It's hard to get them to go there in the first place but once they go they’re dismissed. So then when something later comes along they are like me, well I didn't have early stage, but they end up with more aggressive breast cancer that will obviously cause their demise. So, listen to what we have to say, get rid of the implicit biases and educate us by people that look like us. That was a mouthful.

Dian “CJ” Corneliussen: That's great.

Ryan McDonald: That's OK. So, kind of the flipside of it as we are talking about this and not just looking at a patient and judging the book by its cover. So, Dr. Ramaswamy, how do you and your colleagues or how do you work with your colleagues and to better educate them on the patient that's in front of them and really taking their needs into consideration and on the flipside, how should patients approach their provider if they feel like they are being discriminated against or not listened to?

Dr. Bhuvaneswari Ramaswamy: Those are very good questions with difficult answers right, because I could easily say, oh my god, [00:18:00] we all try very hard and to be honest, we love our patients and we took an oath and we'll treat everybody the same. But really in all honesty, we all know that we all have implicit bias and we see that playout in clinic and we see that as some patients come in, everybody in the clinic room can have an idea which would be not really true but they have already assumed certain things about this situation whether, oh this person, yeah, they won't go on clinical trial. I think there are so many ways, so many little ways that we still have implicit biases. Even though nobody may not, in their own heart. They all come there to do the best job; we are all supposed to take our implicit bias and tell you honestly. Every time I'm shocked at my results. Here I am, my grant is on cancer disparities. I work in the lab about why do African American get more triple negative? This is my passion. But when I take the test, it's not always what I think I come to. So the point being, the implicit bias is so innate. We have to work very hard. We actually have to work towards not using that in our decision making, using that in our caregiving, using that in showing our compassion. I think it's important physicians lead the way in a clinic team and work closely with their team, nursing staff lead the way in how we provide care, all of us have to work together. I think this is just in a small thing but systemically, there's so much more need to be done. This I am talking like in my team that I run, that I see, that I make an effort. We all make an effort. I don't mean just us. We all recognize, we discuss that, so that is an important thing. In our clinic, we'll sometime discuss, if I hear somebody say something, we'll bring that up and say, "You know what? That wasn't a true statement and things." But we have to look at it in a systemic point of view, as well, what the many things we need to do, which access, not only do they get their mammograms, but do they get the right treatments? Do they complete the treatment? Now, are we using the right drugs because all our clinical trials are based on Caucasian women and are we really understanding the right drug, the right dose for the other ethnic racial population? We don't know that. And why? Why is that then we are not having enough people, recruitment into the trial is, are we really doing the right job taking that information and access and educating people? There's just so many things on cancer disparity. I mean, this is only cancer. We have to do, as a researcher, and this involves everybody. It's the whole village. A lot to do. And I don't want to keep talking because I have so much to say on this. It's my life, it's what I do. I am going to stop here, but I do agree [00:21:00] individually all of us have to recognize and work against it, work through it, not against it, work through our implicit bias. But systemically we have a lot to do and research wise we have a lot to do.

Ryan McDonald: Perfect. Thank you. I want to reiterate I am seeing some questions coming from the audience. Please continue to do so in the Q and A box and ask our panel anything you would like and we will try to get to it as much as we can and we will also be doing a Q and A session at the end. Real quick, one question came through and I thought it would be good to ask now because Dr. Ramaswamy, you mentioned triple negative breast cancer, triple negative metastatic breast cancer. So, what's out there for those patients?

Dr. Bhuvaneswari Ramaswamy: Yeah, that's probably one of our tougher areas because as many of you all know because many of you are advocates here and very knowledgeable about breast cancer. So, triple negative breast cancer doesn't have the three targets that those three proteins in their tumor, estrogen, progesterone receptor or her2. So, when you don't have a targeted therapy, it’s just a little bit harder to find newer newer treatments and biologically that's just by inherently, they are a little bit more aggressive. So, we are limited. So, most of our treatments kind of still leaning in kind of chemotherapy space. So, that's where the difficulty is. We do have some novel immunotherapy that has gotten approved in triple negative which is making some headway but still only helping a few patients not all triple negative breast cancer patients. We have a few other targeted therapies like PARP inhibitors and maybe another novel antibody drug conjugate that is approved in triple negative. So, are things improving? Yes, but very slowly and that inherently these are a little bit more aggressive and drug resistant tumor. So, really we should also put one of my pet peeves is that we shouldn't just look at treatments. How can we look at, why do people get triple negative breast cancer, what can we do to prevent and some of the things that we are working on is looking at reproductive factors like pregnancy, breast-feeding, obesity and all of that that could lead into the increased risk of triple negative because it is important to look at prevention as well.

Ryan McDonald: Perfect. Thank you. And once again a reminder, I still see many of you submitting questions in the Q and A box. So, please keep on doing so, we will get everyone their questions. Kind of moving along, CJ, recalling your past, everything you've kind of experienced through your journey, how would you advise others facing similar situations to advocate for themselves. Especially, a lot of people may be feeling alone during their journey. So, what is some advice that you offer there?

Dian “CJ” Corneliussen: Well, now you are into my big category, [00:24:00] advocacy and research are huge categories for METAvivor and our support group very quickly turned into a big advocacy group. We felt a lot more people should understand about it. We began giving talks every place we could, and what we'd be hearing all the time was the feeling out there that it was our fault. So, people would say, oh I am so sorry you are metastatic. That one happened to me because I take care of myself or that one happened to me because I do my breast checks or it was always the implication that we had done something wrong that had caused it. So, we began working out there very hard to change minds and to explain things but public advertising doesn't help a lot either because it sort of promotes that. So, we have actually a big advocacy campaign its nationwide and we call it C to C. We actually received grants from pharmaceutical companies to purchase an RV and with that aside from COVID times, we travel around the US and we give talks at hospitals, public forums, churches, any place where we are welcome and we educate people on metastatic disease, so that they will better understand the disease. It's even in the medical field, I remember having a leg problem at one point and went to see a doctor and he said well, usually we do surgery for this, but in your case, we'll just put a brace on your leg and that was because I was metastatic and his belief was I wouldn't live that long, so why go to the effort. Well, I didn't use the brace obviously. It's just that we find prejudice on all levels and I remember one woman said to me once that, she took a month to find out she is metastatic. She had a test, nobody told her anything and then one of her doctors she ran into in a hospital hallway and he said well, what medication do they have you on now. She said what do you mean and she learned that they'd known for a month she was metastatic and her doctor just didn't want to approach her on it. So, there is a lot of prejudice on so many different levels which is a huge thing and a lot of this is getting out. If patients, if they even speak at their churches, at schools, any place where they have an opportunity that really helps. And the other aspect we got into is research because far too little research is going on out there for metastatic disease. We've increased that to an extent. We have a major advocacy program where we train people to go to capitol hill and I live close to capitol hill, so I go and annually we have a program for patients. We invite them, nationwide to come join us and march on capitol hill. [00:27:00] We have appointments already setup with all the legislatures from every state for which a patient is with us. We go to their offices and discuss our stories, talk to them. And we actually have been able to push research in a number of areas. The NCI has now increased when it's doing a research and other places have as well. So, this has really made a big difference, but you really have to get out there. Patients wanting to be a greater advocates if they want, they are welcome to go through our website and sign up for these various forums and training session which we have and they can go with us to the capital building when we get past COVID here.

Ryan McDonald: Ok. Perfect. Once again questions keep coming through and I'm actually going to interject and ask Dr. Ramaswamy, we are talking about metastatic disease but some who are joining, they might not necessarily know what that means. So, can you give a little explainer as to what this is?

Dr. Bhuvaneswari Ramaswamy: Sure. So, Metastatic disease is when a breast cancer has spread to a distant organ. So as long as the cancer is in the breast, in the lymph nodes in the axilla, in the lymph nodes that are kind of close to the sternum, even if it goes to the lymph nodes above the neck, this is all still be considered potentially curable at the time of diagnosis. At the time of diagnosis, the cancer it could be anywhere from stage one to stage three, it's curable. Stage four is when that cancer cells have disseminated from there and spread through the blood stream and its gone to either a bone, a liver, lung, brain and then some rarer really peritoneum, any place but the big organs are those. Now for some patients, they will present as stage four. Those are called de novo metastatic breast cancer which means for some reason unfortunately, they did not catch the cancer early between stage one to stage three. It's not their fault, it’s just what could have happened. They come to you, they come to you and they are already stage four. So those with stage one to three could after some years whether its few or long sometimes these recurrence can come 10 years later certain breast cancers and that could spread elsewhere and becomes metastatic breast cancer.

Ryan McDonald: Thank you for that explanation. I realize that many who may be joining or some who might be joining are may not be that familiar. So thank you for that. One thing too, I want to through out and a question came out as we have all been talking kind of there is this discussion about advertisements or commercials about the disease. But one thing that may don't show is young women with metastatic disease. [00:30:00] So, Stephanie are you able to comment on that and what we are also trying to do to combat that?

Stephanie Walker: Well, for one, I applaud METAvivor because of their research they do for metastatic breast cancer. The flipside, I am going to slam pharma here just for a little minute, just for a little bit. If they would take the money that they spend on advertising for metastatic breast cancer and new drugs that haven't been tested and may not even work for women like me, that look like me or if obviously they are all older women on these commercials and we know that breast cancer, metastatic breast cancer, could happen in the 20s up to the 40s. Even when I was 40, I was considered old. So, if you could spend the money on research and gear it to all young women. Young women are getting affected with this breast cancer. It hits me hard because I feel so bad. It's not that I less value my life for one of them but they have young children. They have children in school and they haven't begun to enjoy the joys of having children in the adulthood like I do. Sometimes I wonder if I could go back a little bit with them, but young women are hit hard and especially black women are hit hard with triple negative breast cancer.

Ryan McDonald: Thank you. Another thing too, we talk about this information and we are talking commercials and resources and everything like that and then the space of breast cancer in particular, there are many resources out there. So, CJ, what advice can you give patients and not just patients but maybe caregivers of how to navigate this field where there is a lot going on?

Dian “CJ” Corneliussen: Well, I think it is a difficult field out there. Sorry I was writing my little comment. I had a comment on the young women and I didn't hear your entire question. So, let me comment just briefly on the young women. Part of the problem with the young women is many go to the doctor and feel they have breast cancer and they say you are too young for breast cancer. So, I think part of this is educating the doctors that, no, you are never too young for breast cancer. There is an 18-year-old in our area that had metastatic breast cancer. So, they need to listen to these women when they have a problem and do something about it. [00:33:00] And could you now repeat your other question?

Ryan McDonald: Yes. Of course, one of the things we are talking about, commercials, resources, advertising, everything out there. There is a lot of resources people can turn to. So, kind of what advice would you offer for patients or even caregivers just starting out like how to navigate this field?

Dian “CJ” Corneliussen: It's difficult. It’s one of the reasons we started out the support program because for patients, really talking with other patients can be their best source of education on that. Frequently the hospitals aren't carrying information that will necessarily be helpful to them. They now acknowledge metastatic breast cancer but they don't have a lot of resources. So, I think reaching out to, there are lot of groups online, you have to be a little bit careful with those. But especially our website, if they go to that, if they have questions, if they want advice, if they want to know where to turn, we've got our telephone numbers on there you can do that, you can send us email and we always respond to the patients, but it is hard out there to go and navigate the system, absolutely.

Ryan McDonald: Thank you. And also to as we are coming up with about 10 more minutes left before our Q and A session, just a reminder once again continue submitting your questions and we will get to them near the tail end of the webinar. Now, we are talking obviously about diversity inclusion in metastatic breast cancer. That's what many of you have kind of gone and led you to be heroes for cure. Starting Dr. Ramaswamy, what has been or still needs to be done to continue to facilitate the growth of oncologists and providers from diverse backgrounds to kind of better represent the patients they are treating?

Dr. Bhuvaneswari Ramaswamy: It's a great question and there is no doubt that culturally relevant, culturally similar backgrounds of providers or nursing staff or a patient navigator definitely improves understanding of the process. Definitely improves accrual to clinical trials and patient satisfaction and probably also treatment compliance and everything else. So, having culturally diverse so that you can kind of address the needs of the patients we see is important. So to your question, how do we, I think some of it goes into a situation that is way beyond us. We need to increase the number of diverse people coming into medical field. It starts from there right. That's not something, [00:36:00] I know it’s not a simple thing we can address. But are we making sure that there is a cupois, I mean I can tell you that trying to apply to medical school. You don't need to get in and pay the fees. To apply to medical school, one has to be extremely rich to be able to apply to each application. Thankfully with this COVID, their interviews are being on virtual but otherwise these children have to travel to go and have a physical presence to go to ten different places to get admitted to maybe one and then they can't afford to pay the fees so there's so much. If you truly want a diverse providers of physicians and nursing and everything else and physicians and researchers, we've got to change the way we run our education system,right. So the cost that we pay. So, it’s a little beyond the topic here but within our own ways, I agree what we try to do in our institution is we try to involve some patient navigators and there are some people who actually ask for one which is I am so glad the patients are actually using that word lately in the last year or two, which I am so proud of that. They are like, “do you have a navigator that can help me as well.” So, we have some different racially diverse navigators who can help them through the process but I do think there is a lot more that needs to be done in order to increase the diversity in the providers and in the researchers and I think there's just lot more that needs to be done.

Ryan McDonald: Ok and also to keep this kind of this topic going in particular. Stephanie what do you think needs to be done to kind of advance diversity and inclusion pretty much across all facets of metastatic disease?

Stephanie Walker: The doctor hit a nail on the head, you got to start early. You got to encourage and take away some of the restraints that are there for the education system. Researchers, my gosh, I haven't met very many black researchers at all and I've been metastatic since 2015, not into the advocacy world until 2018 but I still haven't found very many black researchers. So, it's kind of hard to, I tell the researchers, that I have the pleasure meeting, that when you are in the lab and that mouse that happens to be a white mouse, we can fix that too. Just joking. That we have a face on that mouse. I want you to remember a human face when you are doing the study. Lot of the stuff that’s goes just from the lab to the bench. Have me in mind that I am not like everybody else. I am different, my genetic makeup might be different than my white counterpart. So with that being said, some of the medsaren’t going o work. work, you need to figure that out for me [00:39:00] and to get a medication to where doctors are using it in the clinics on us patients has to go through clinical trials. So, you need to really increase the number of black participants in clinical trials. How do you do that, you ask. A. S. K. Ask us. We are not being asked, I have never been asked about a clinical trial. I mean, thank god I am still stable but I still haven't been presented with the information to ask about a clinical trial and comes with those biases again. People aren't asking, the providers aren't asking the black men or women with metastatic breast cancer because they assume we won't do it, we won't qualify, we are not going to be able to finish it out, we won't finish it out, we'll have too many complaints. But if you could help take away some of those barriers, travelling to and from, making sure maybe we can get to lab work and the x-rays and scans closer to where I live instead of travelling to California. Maybe there can be a day of the week that's a little bit off hours. So, I can go to work. I have to work to provide the insurance that I am having to pay for my cancer care. So, I cannot not work and I got kids, and I got to pick up Johnny off of his school bus. So, I am not going to be able to go, if I go, I got to be home by 2 o'clock to get the kid off the school bus. So, all of these things can be addressed, and I can’t easily handle them but there are resources out there that can easily handle these. Especially with setting up, when you are setting up a clinical trial, you need to advocate there too, to give an example of that. I'm not just, I'm speaking about black because I am black but all the other races out there that are being, having the same inequalities that we have as well. But have us there to talk about it from the beginning. Don't wait till the end and say hope and pray three hail Mary's that this treatment is going to work on you. So I think we need to be asked first of all from our clinical providers, listen to what we have to say, don't dismiss complaints. And we as patients, we need to speak up. I say to everybody speak up. That provider pays taxes just like you pay taxes and their are dime a dozen. If this one doesn't fit with your personality and they don't [00:42:00] listen, go find another one.

Ryan McDonald: Perfect. And then CJ, too, kind of your input here in this topic on how to advance diversity and inclusion across all facets.

Dian “CJ” Corneliussen: Yes. I think diversity, we've been very aware of that at METAvivor, and indeed one of the ways we found is, our presidents themselves have been both black and white, male and female, and gay. And so, we're getting more and more type of people. If you have people from those backgrounds at the top, it helps breed that culture, and it helps to make people more aware. I'd still like to see us bring in Hispanics, American Indians, and Ashkenazi Jews, because they also are at very high risk for this. I think the more that we can get people involved in our organizations that are – can be representative of these different peoples, I think the better it's going to be. And I think as the team of us here, as metastatic patients, I think we need to get maybe a Zoom session going with some of the heads of pharmaceutical companies and ask them these questions directly. And ask them where the problems are, where the hindrances are, and we can do the same thing with research. That's certainly something that can be achieved.

Ryan McDonald: Thank you. Well, we're kind of coming up here on the Q&A session, so once again everybody, keep submitting questions, we'll do our best to get to as many of them as we can in the next 15 minutes. Now, one thing I want to kind of go back to as we're doing this, Stephanie, you just mentioned kind of, "Well, I have to pick up Johnny from the bus stop." I have to do this, that and the other thing. So how do you balance your advocacy efforts with your treatment, and your life and everything like that? How do people get through all this?

Stephanie Walker: I can honestly tell you, I have no idea. I have been so blessed and thankful that I don't have children at home, I don't have anybody to worry about but me, and my husband and a dog, and they can go on autopilot. I don't know. I have – I struggle just with the treatment, the side effects, the mental health has been the worst for me. So I don't know. That's why I say young women need help. They need the help. They – they're the ones that are juggling a career. Luckily, I love – like I say, luckily, I don't work anymore. I would love to go back to work, but they are working. They have to work, remember to keep their insurance to help pay for their treatment, so they got to work, [00:45:00] and a lot of these moms may be single moms that may not have a big support team, like some of we have here probably. So I don't know what the answer is, I really don't. Other than getting rid of some of the barriers, reaching out to these young women early, when they aren't metastatic to provide some additional resources to them. And that would – that would help a lot if the physician knew based on their age, some resources, and to also get them into support groups with like people, young people with children, and balancing work with home life.

Ryan McDonald: Yes. It's a – it's definitely a tough job to balance everything, I'm sure of it. So also kind of – we're gonna kind of bounce around here and talk about different topics. But Dr. Ramaswamy, in terms of therapies, someone's asking what are some of the treatments currently available for both metastatic breast and triple negative metastatic breast? And what key research is being done in these fields?

Dr. Bhuvaneswari Ramaswamy: That's about a one-hour, if we have, topic, but let me try to summarize in the smallest way. So the key thing that we need to be really proud of and as – as a nation, and more than that international nation, maybe so – is that because it's not just the researchers doing it, just the doctors doing it, it's all of us together, is that we are finding new and novel therapies for metastatic breast cancer. There are multiple new drugs that have been approved. Yes, there is three large subtypes and there are probably more new drugs in the HER2 positive world, because it's kind of an easier target to target and find new drugs. Then we have the hormone receptor-positive breast cancer, which is the most common type, subtype which also is doing better because we have some really novel treatments that are just pills that work really well, that can be given with anti-estrogen therapies and new treatments coming up. And – but the triple negative, I agree is still a place that we can – we need to do better. I did talk a little bit about immunotherapy that's coming into the world of metastatic disease, and also in early-stage breast cancer, so that may be one new kind of approach that is coming along. I think the new things if you just asked me what are the new things just specifically in metastatic disease? I would say of course, we are understanding the cancer a little bit better, because we are able to do various things. Not just biopsies and sequence genes within the tumor, we are actually able to take the blood and isolate circulating tumor DNA, so it's much easier what – [00:48:00] the other word we use called liquid biopsies. So we can do this frequently in a metastatic breast cancer patient's life and understand how this cancer is changing over time. This has helped us to recognize new targets and new treatments that we are developing. So that's a new and positive thing that's coming. Newer agents, because we understand the cancer better, they can target it better as another – I think new and new agents, particularly in something called antibody drug conjugates that are new. And then I think the third thing that I would say is the role of immunotherapy, we'll hopefully understand it better and will apply to more patients than it currently applies to. I think those are all and I think we are starting to understand treatment-related side effects. How do you address neuropathy, how do you address sexual disturbance, how do you address vaginal dryness? How do we address all of the other things that go along with all these treatments a little bit better? We need to do everything even better, but we are on the right track, and these are some other good things that's happening. More clinical trials, more access to all people, for clinical trial. This is all what we need to do better.

Ryan McDonald: Thank you. And kind of moving along a little bit too, there was a few questions kind of in this realm but CJ, I'll kind of pass it to you. A few people are asking, "How can I become an advocate? How can I get involved in say, peer-to-peer support groups?" So, what advice would you have to some who are just starting out, but really interested in joining or becoming their own advocate?

Dian “CJ” Corneliussen: Absolutely. We welcome everyone wanting to become involved and if you go to our website, you can clearly find – just look under support, and you'll find telephone numbers, you can call – look under advocacy. The contacts are there, so you can find that information on our website. I – looking at this, I don't have it right in front of me, but we have a lot of information there. You can look and see where you would like to participate and that would be great. Just because I haven't mentioned it, we have an enormous research effort. Since our founding in 2009, we have awarded 166 research grants totaling $23 million. We've been very big on research and funding and supporting research, and we work very closely with metastasis researchers. I would like to comment also, you mentioned earlier on the young people and the diagnosis, I think you really need to push, push the doctors more to recognize metastatic disease in young people, and that's just so important. And the young people, I want to give hope to people out there who are listening. I've been metastatic for 16 years, so I'm one of the longer survivors, but there are people longer than I in my own town, in my own [00:51:00] woman is 22 years out, so we are living longer. When I was first diagnosed in the support group, we just knew people were gonna die fast and they'd die in one to three years. It was devastating. My – I had three co-founders, two of them died in the first 12 months and then the next one in 2014. But they are living longer now, so there are advances in research. The drugs are keeping them alive longer, the doctors know more about what to use and how to use it, so there's encouragement there.

Stephanie Walker: If I can, can I capitalize on what CJ said as far as becoming an advocate? Look out there to other organizations as well, because I didn't know anything about it and looked online. Be careful about looking online, but for vetted, nonprofit organizations out there, they can also can give you a slow start into advocacy as well, and one would be living beyond breast cancer They go from early-stage through metastatic. That's a one-stop shop. Sorry about that guys for mentioning it that way, but you can get help there, volunteer, they have a volunteer program, advocacy program that's called Hear My Voice. They teach you about advocacy, advocating on the hill, as CJ mentioned. That's how I got my little start thrown right in there, I did. And so there's different advocacy routes that you can take, like CJ mentioned, you can do research, yikes – all kinds of different kind of different researches and advocacy avenues that you can go down. So look for other nonprofit organizations in your area too.

Ryan McDonald: Yes. Then as Stephanie mentioned it's, and as CJ mentioned, because I know some of you have been asking, it is as well. So feel free to check out those websites and many, many others out there, also continue to feel free to submit questions. We still have a few more minutes, but we still have a couple more to go through. So kind of – Dr. Ramaswamy, when people get diagnosed, they typically feel a lot of stress, fear, anxiety and that's – that's rightfully so. So what's out there that can help patients kind of cope with their diagnosis and speak to someone to maybe discuss what they're going through?

Dr. Bhuvaneswari Ramaswamy: Sure. No, I think a diagnosis of metastatic disease is really difficult. It is catastrophic in the life of a patient, because I think now there's so much about cancer out there, and nobody is – the C word [00:54:00] is still the most feared word. But then if you come in with a small tumor in the breast, and – I think people are educated enough and knowledgeable enough to say in those early stage, "OK. I know I can fight this, hopefully I'll be cured." You know that that word, that "Hopefully I'll be cured" is there. But when we talk about metastatic disease, even on that day, we talk to them that, "Hey, we can treat you. We can control the disease, you can live many years. We are gonna work for that." And people do live many years, and we stay definitely on the positive note because we should. And just as CJ said, there are many people who live many years, but we have to tell them that we can't truly say cure. But as cure means your treatment is done, "Bye-bye, I don't need to be on treatment." And you don't need to do scans, you don't need to do that. We'd have to educate them, so now their whole life is completely changed in that just one scan, one visit, one minute that I walk into the room and discuss the scan, that's life. The whole family's life has changed because now they have to come in every month, scans, treatments, side effects, who knows? And the big question mark at when is it gonna be really bad? So yes, there is a lot of toughness at that time. I think part of it, we – the way we approach, yes. We spend a lot of time, we spend a lot of time again and again, because the first day mostly nothing goes in, except the fact that you say it's not curable. And then we look at other ways, and many ways are we have psychosocial counseling that we set up with our Living Well With Advanced Breast Cancer Clinic that I talked about, is the perfect place. Not the same day you've been diagnosed, but within the first six months to kind of understand the biology of those, the positiveness, the new treatments and then talk to integrative oncology, and dietitian and physical therapy and all of that, and we also – we spend – we spend a lot of time. And the other thing that we do, I think both CJ and Stephanie talked about, is to find a peer group. So we do have a cope program where we – if they want, now some people don't want that. So it really is some people like support groups, some people don't. Some people like to have someone to talk to, the others would like to deal with it on their own. So depending on their needs, if they need a peer person who's doing well they can talk to, we do that as well. So there are many ways with that, and I'll tell you, it doesn't get them on the first six months. This just continues the support that you have to give because remember, things could be going well for two years and then one scan again, progression. They have to change treatment, now they've completely gone down again. They've come up this way then emotionally dipped again, you have to help them come up. So it's a – it's a process, it's something that we all need to work together, family, our supportive care services, the provider, all together to help the patients.

Ryan McDonald: And also, one other question that came through as we're talking about coping with metastatic breast cancer, but also living with metastatic breast cancer. And there was one comment during this [00:57:00] panel discussion about sexual health and sexual treatment side effects. And one person asked, "How common is this, and how do I know if that's affecting me? And what can I do to seek treatment for that?"

Dr. Bhuvaneswari Ramaswamy: Well, I'm happy to talk about it unless-.

Ryan McDonald: Yes. Go ahead.

Dr. Bhuvaneswari Ramaswamy: So I can start? And – so it is – it's gonna be – it's more common depending on the treatments that you're on. So specifically, if somebody who's pre-menopausal is being pushed into being postmenopausal, and go on anti-estrogen therapies, then you know the issue with dryness and lack of libido, and also painful sexual intercourse are all part of that. That it doesn't happen, I would say, if I have to pick a number I would say across the board about 30%, it could be more in certain subtypes and certain situations. Yeah, you will know because you did – there's dryness, there's pain, or there's lack of interest, that has changed. It is very important to talk to your providers about this, because there are ways to address this, we have a sexual health clinic that we have as well, in addition to some other things that we can do to help. So what's most important you recognize the change, it's important to bring it to your physicians and providers. And if they're not listening, then then you do need to speak up and reach out to others that – who can help as well. So-.

Ryan McDonald: Perfect. Thank you. And well, unfortunately, yes. CJ, did you have something you wanted to add?

Dian “CJ” Corneliussen: Yeah. Actually I was asked, I gave a talk on that at Lisbon, Portugal, for an international conference. Because the sexual issues are huge, and ran a survey beforehand, and it's very pervasive, to have just extraordinary pain in intercourse. And there are now things that you can insert, there are things that will help that didn't exist before, and some people can get around that, but it is an enormous issue. That has broken up some marriages, but a lot – most marriages make it through but it can be enduring. And I just wanted to say – clarify, METAvivor is metastasis survivor, it was a combination of the two words to mean yes, I'm alive, but we didn't exactly consider ourselves survivors. So we called ourselves METAvivors, survivors meta metastasis.

Ryan McDonald: Thank you. And before we kind of wrap up here, I'd like to give everybody kind of one last chance to kind of close with remarks. Stephanie, if you wouldn't mind going first?

Stephanie Walker: I appreciate the opportunity to speak first of all, and with CURE as far as the designation award. And I also just want to remind people [01:00:00] to speak up if you have any questions. If you can't speak up, take somebody with you that has a voice, and I'll teach you to have a voice, and always ask questions. If you're not sure, ask, if you can't remember write down, and I always suggest a take a pad and a pencil and you write or either have somebody there to write down. Know what's being said and what's being done, and always remember that you can always get a second opinion.

Ryan McDonald: CJ, any last-minute parting thoughts?

Dian Corneliussen: I want to thank the other two speakers, for all their excellent advice this evening and to say yes, really always ask questions. It's one of the good things about a local group too is, that when you're having problems picking your children up for school, or when you can't make your meals because you're ill or whatever the case is, when you have those local members, they do that for you. If you're having brain ready – radiation, you can't drive yourself, your other local members do that for you. They are the ones, they're always ready to step in, they understand what you're going through, they understand what you need. It's another great part of a local support group.

Ryan McDonald: And lastly Dr. Ramaswamy, any last-minute closing remarks?

Dr. Bhuvaneswari Ramaswamy: Sure. First of all, thank you for this absolute privilege. And like Stephanie said, I don't think I consider myself a hero, but – to be again, be given this opportunity, I'm grateful. I also – lovely to have met Stephanie and CJ and there, really amazing work that they do in being an advocate. And I know CJ as your support has helped so many researchers, and I personally thank you on behalf of researchers as well. But I just want to end to say that first of all, leave you all with a message of hope. People, I've been doing this, being in the breast cancer world treating for 20 years and just as CJ said we used to tell the median survival is one year, two years. Now, I don't tell them the median survival. I tell – if they push me, I can give some numbers, but I always tell my patients don't think about this as a number. I have patients living ten, 15 years, 20 years, living well, so that's the key. Let's live well, with advanced breast cancer. That's what the clinic is called, and that's not just for that, I really work with talking. This is – let's forget about the dying part. I'm not saying we can always forget that our moments we think about how – when is then gonna be soon, but most of the time, we should be living well with it. That's what all of us want. We're all working towards that. And really, I hope we can all inspire you to live well with this disease, be an advocate for yourself and for the disease anyway you can contribute and ask the questions. Make your providers think that's a good thing. That is a good thing, so we appreciate. and I learned the most from [01:03:00] my patients. They're my biggest inspiration. Please continue to question us. Continue to ask the questions that you need answers for.

Ryan McDonald: Perfect. Unfortunately, we are out of time. But if you'd like to watch this webinar again, it will be available on the webinars on-demand page of within the coming days. I want to thank our panelists and the audience for attending and participating in today's event. And I would also like to thank CURE and our sponsor, Lilly Oncology, for making today's educational webcast possible. Don't forget to check your email tomorrow for the survey to be entered to win a gift card. Thank you all for joining. We'll see you next time.

Dr. Bhuvanesw

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