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The Positive Gene Podcast: Cancer Vaccines, BRCA1, and the Power of Storytelling: A Conversation with Aliza Friedlander | Season 3 Ep #9

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Sara Kavanaugh

Hi, everyone. Welcome back to the Positive Gene podcast. This is your host, Sara Kavanaugh. Today I'm talking with Aliza Friedlander, a BRCA1 positive previvor who made the decision to move forward with a preventative mastectomy on her own timeline. After thoughtfully weighing the risks, emotions and realities of living with a genetic mutation. She's now working with the Cancer Vaccine Coalition, the only nonprofit organization solely focused on raising money and awareness to accelerate cancer vaccine research to treat cancer, prevent recurrence in cancer survivors, and possibly prevent cancer in high risk patient populations. And as a side note, this is very exciting for me because as a previvor myself, I am beyond thrilled that this research is moving forward.


Aliza brings a unique perspective to this work. She is a former morning show producer and communications expert with a background in PR and marketing.  She helps brands tell authentic stories and build real connections. And she's now using that storytelling expertise to have some of the most important conversations that we can have about the future of cancer treatment and prevention. And I'm so happy to be included in that conversation.


So I'm excited for you to hear Aliza's perspective on prevention, communication, and the power of owning your own story, especially when that story can help others navigate their own health journeys. So welcome to the show.


Aliza Friedlander

Thank you so much for having me. I'm really excited to have this conversation.


Sara Kavanaugh 

Yeah, me too. All right, well, let's jump right in. You have been open about your BRCA1 positive journey and your decision to have a prophylactic bilateral mastectomy. So let's just hear in your words what that decision process maybe looked like for you emotionally and practically. And before I have you answer that, I want to recognize that a lot of folks that are listening to this show you know, maybe on the tipping point of making that decision themselves, or they've already made that decision, and maybe they're still kind of wrestling with why they made the decision that they did. And so I really appreciate, you know, another perspective from somebody who has been there and has even shared that story publicly.


Aliza Friedlander 

Yeah, so we found out in my family that this genetic mutation was there back in 2013. So was May 2013, right around when Angelina Jolie was talking about her story. was getting a lot of coverage. My maternal grandmother had a second bout of breast cancer. So as the story goes, she was in the emergency room or the hospital getting treatment and stuff. they were like, we have this new genetic testing that you can do. It's a spit test, pretty easy, just spit in it. So she was like, okay, great, sure, spit in it, comes back with this BRCA1 genetic mutation, which in 2013, as a lay person and the general public really didn't know a ton about what that meant. So here we are, I was young, I hadn't had children yet, I didn't have life insurance.⁓ we have no history of early onset breast cancer in our family. 


My grandmother got this genetic test result called my mom, my aunt, my uncle, all of us was like, you got to get tested. Still didn't really understand what any of this meant. And I just remember going through and watching my mom and my aunt and my uncle all got tested and my younger sister actually got tested and it was such a process - it was secretive, they had to do this spit test in a specific office that they had to send to a private lab in California. That was one of the only ones that was doing the testing at the moment. And then they had to wait, and then they got this back, and it was kind of like a, okay, now you have to go through all of these drastic measures. Like my mother was not quite 60 yet  was already post-menopausal. So it was like, you need to get all of your gynecological stuff taken out and you have to do a mastectomy and you have to do all of these drastic measures to reduce your risk of cancer. And I remember my mom and my aunt in December of 2013, both did the gynecological stuff, none of, nobody did the mastectomy or the breast side of things.


Even my grandmother who had a second bout of breast cancer had only had a lumpectomy, or not only had a lumpectomy, but hadn't had a mastectomy. So I had no baseline for what a mastectomy even was. This felt so extreme. And as a young woman, an adult who was newly married, was starting to think about what I was gonna do for my family, planning, all of these things that I had in my head, it was a lot.  And I am somebody who has a lot of anxiety that manifests around health already. So I didn't know at that moment in time if the reward of knowing this information was worth the risk of triggering all of the severe anxiety that I know manifests in myself around health related issues. And I didn't know if I was going to do anything about it. My grandmother had had a mastectomy. My mom hadn't had a mastectomy. We had no history of early onset breast cancer. There were still a lot of unknowns.  So I did do the research. I talked to genetic counselors. I watched what my mom and my aunt had decided to do. I watched what my sister decided to do.

And my sister, who's a couple years younger than me, actually did decide to get tested. So I was, just to put it in perspective for ages, 25. So 12 years ago. I was 25. My sister was 21.  We're 22. So she did get tested. I did not get tested. And my sister went through like her decision making process. My mom got tested. My aunt got tested. They were all three positive. My uncle was negative. And I made the decision with my husband and genetic counselors and my doctors that at that moment in time, I was not going to find out if I had this gene.


And so I didn't, and it was really, at the time I didn't realize, I think, what I was doing, what I was going through, gravity of this situation. I do remember though, like I had called a few organizations and tried to get some information and everybody was very quick to sort of jump down my throat and be like, what do you mean you're not getting tested? How can you not know?


Of course you're gonna, if you're positive, the only step forward is a prophylactic bilateral mastectomy and maybe a full hysterectomy. And I was like, whoa, hold the phones. Like I haven't had children. I maybe want to breastfeed. I don't know if this is what I want to do. You're making me very anxious. I'm already anxious. So I made this educated decision to not get tested at that moment in time. And I went along with my life. I had my kids and I breastfed and I continued to, you know, do what my doctors recommended. I stayed in close contact with genetic counselors. I had meetings, I talked to people. I lived under the assumption that I probably did have this genetic mutation. However, personally, I didn't do any of the surveillance or stuff for the genetic mutation. 


 Now my sister on the other hand did. So she got tested and ended up, she did every six months mammogram or MRI with contrast, transvaginal ultrasounds, all of that. That was her decision. That was her choice. I did not. Again, it was at a time where there was just so little information around it.


And it was grounds to deny life insurance. I would not have been able to do IVF even if I had wanted to, don't think, to remove the gene. Now know now people are starting to do that and I know some people who have done that. That wasn't even an option when this had come out. So that was the choice that I made. And so I did not get tested at that point in time.


Sara Kavanaugh 

Mm-hmm. Wow.  I do want to speak to the point that you made. You use the word I made an educated decision and you did the due diligence. You took the time.  And like you said, even when as you were in your early 20s and didn't understand the gravity of the situation, you really took your time with it. And I think that's something I like to always remind people about. You can take your time. You are going to get pressured sometimes and still even still today, 12 years later, it does happen. And I love that you framed it that way, that you made an educated decision or an informed decision and took your time with it.


Aliza Friedlander 

I was just gonna add too, again, because this is my journey and path and not, I don't wanna ever give medical advice, but I think gathering all of the information and then deciding what works best for you, even the genetic counselors and my OBGYN were like, you know what, based on your family history, based on what we're seeing, based on the presentation of this, we feel comfortable with you going down this path in this direction if this is the choice that you want to make at this moment in time. However, at any given moment, we may give alternate recommendations or alternate suggestions based on what happens or what we see or what goes on. And so I did stay very close to genetic counselors and always had somebody in my back pocket that every couple of years I did like check in with and said, okay, this is what's shifted. This is what's changed. This is what we're seeing now. I was very close with my OBGYN who I trusted fully. 


I like to say that I didn't get tested and I kind of went along the path of my life.    But this always was in the back of my head. And this was always, even at that early stage, something that I always had in my mind. And my ultimate thought and process was I was gonna go through my childbearing years and sort of have my children, breastfeed if it worked for me, get through that phase and stage of my life, and then get tested and figure out what the next steps were in that journey.


Sara Kavanaugh

So you've spent the first part of your career as a journalist and wrote this story where you described kind of following that route that just as you described fit your circumstances and the values that are important to you and your family. Maybe go into a little bit deeper on how you came to that decision and then ultimately what led you to get the double mastectomy.


Aliza Friedlander

Yeah.  Again, I came to that decision just because of the anxiety that I know is within myself for health related things. And, you know, from my understanding, have pretty, you know, we have pretty good surveillance for breast cancer and that side of things. I was more concerned or not more concerned, but I was very concerned about the ovarian side of things because the surveillance is still in progress and we're still working towards that. so doctors told me that like, as you're looking, you might go down these rabbit holes of false positives, false negatives for all of this type of surveillance. And I just didn't know if mentally I could handle that at that moment and in that period of time. And I knew I wasn't going to do anything prophylactically about it. I wasn't going to get rid of my ovaries, uterus, all of that, I had not had children. I wasn't going to have a mastectomy. My grandmother had had two rounds, bouts of breast cancer, still had her breasts. My mom had not had a mastectomy. Nobody in my family had had a mastectomy. This wasn't something that was, you know, this deep seeded family history of early onset breast cancer, lots of loss. You know, sometimes you hear those stories. That's not what we were experiencing. We found this genetic mutation on a serious fluke.  And it just so happened that my grandmother was going through breast cancer treatment simultaneously again with Angelina Jolie coming out and sharing her story about what it is she was doing. And  the genetic counselor said to me again, based on what they're seeing and how this is presenting and the information that we have, they felt comfortable with me going along that pathway. And so that is what I did.


And it was fine for me, it worked. It was great. I mean, I moved forward with my life. had kids and then between, I have three daughters. so, you know, again, everything that I did always was in this light of, okay, you might have this genetic mutation.   in 2021, I was ready to start having a baby. And at that point, actually, the genetic counselor and my doctors were both like, before you get pregnant with your third, you do need to have a mammogram and MRI with ultrasound. We know you haven't done it up until now, but you need to have a baseline before you now get pregnant with your third. So I did like held off on even starting to try in order to get in with the, for the screenings and diagnostics. I did get a baseline MRI with contrast and a mammogram in December of 2021. And then I got pregnant with my third daughter in the spring of 2022 and then had my third daughter in December of 2022. So I had my three children that I had wanted to have, you know, again, breastfed, went through my life, still hadn't gotten tested, nothing. Like was like, okay, business as usual. Like I have my baseline MRI with contrast. I have my mammogram. Next we'll figure out what it is. And then in October, 2023, my sister was diagnosed with breast cancer. So she was 32.  And at that point, our family history drastically changed. So it went from this decade plus of no history of early onset breast cancer, know, typical risk, even though we had this high risk mutation to something completely different. And this is to my sister was like I said, did get tested, knew she had the genetic mutation and was doing surveillance every six months and was still diagnosed at 32 with breast cancer shortly after she stopped breastfeeding my nephew. And so that's when really everything changed and it was no longer this hypothetical situation of a high risk that you could have. It was a, my God, now I'm gonna watch my sister go through all of this.


We have this genetic mutation. I'm done having my children. My youngest was gonna be a year in December. My goal with all three, if it had worked to breastfeed, was a year. And so at that point, my doctor and my genetic, everyone was like, you can no longer wait. Like you now need to know if you have this genetic mutation and almost you don't have a choice, but it was also for me. was like, now I don't have a choice. Like now this is the next step that I have to take. I need to know for myself. I need to know for my children. And my OB-GYN was like it's more important now for you to know this and we figure out what these next steps are gonna be than like for you to continue breastfeeding or any of these things. Now I did make it to the year of breastfeeding, but so I ended up, my sister was diagnosed October, 2023. I ended up getting tested immediately, the genetic counselor, because I had her in my back pocket and I was always in contact.


As soon as my sister was diagnosed, maybe that day or that week, I emailed her. said, I need to get tested. Please send me the kit. 10 plus years later, it was such a different experience. She was like, sure, no problem. I'll send it to your house. It comes to you in the mail. All you have to do is spit in it. Then you put it in the envelope for FedEx, send it back out, and you'll get the results in a few weeks. So like, it went from 10 plus years ago when my sister and my mom were getting tested to this secret lab that they had to send it to, to...It was a one, two, three, and no skin off my back. It was so easy. The genetic counselor sent it to my house. I spit in the tube. I put it in my mailbox. And a couple of weeks later, they called me and were like, yes, you are positive for this genetic mutation, which I had assumed I was positive. I was living under this assumption for all these years. I still, even when I got that final...Result there was a piece of me that was I mean, I I don't remember I think I maybe cried I think I felt very like there was still this piece of me that was like, oh I guess there was like a 1 % part of me that was holding out hope that maybe I Didn't have it because it is 50-50 Not the case. 


So that was December of 2023 and then January 2024 I remember I stopped breastfeeding the night before I went in for my diagnostic MRI that I could get in with a breast surgeon, got in with the breast surgeon and ended up having the prophylactic bilateral mastectomy and reconstruction in March of 2024. So I went over 10 years with not knowing and not doing anything till within a span of 10 weeks, finding out I had this mutation and having this massive surgery.


Sara Kavanaugh

Wow, what a whirlwind.


Aliza Friedlander

So that's what, and that's what shifted it. know, my sister was diagnosed with breast cancer, so my family history drastically changed and I wasn't gonna sit around and wait.


Sara Kavanaugh

Yeah, yeah, absolutely. How's your sister doing today? Do you mind sharing?


Aliza Friedlander

Of course not, my gosh, no. Thank you for asking. She's, thank God, doing amazing. She is in remission. But it was tough and it was not easy and because she has this genetic mutation, she had to, you know, was a very aggressive form of breast cancer that she had and she had to get everything thrown at her, so mastectomy, 12 rounds or 16 rounds of chemotherapy, 30 rounds of radiation, medically induced menopause. She did do a round of IVF between her surgery and chemo because she has, have a nephew, but so it was a lot. And even with those, there's a risk of recurrence.


And even with everything, there's this risk of recurrence and this fear that is associated with it. And it's one of the reasons I'm so passionate about these next generations of treatments and cancer vaccines and all of that, because I just see, you know, we are grateful to have the treatments that we have now that keep us alive and the testing that we have to let us know that we have these genetic mutations and all of the progress that we've made to get where we are today. And it's not easy. There are so many side effects that come with all of these treatments. There are so many side effects that come along with, you know, even me, somebody who's a healthy person, essentially amputated a piece of my body in order to reduce my risk of cancer. And when I was weighing the pros and cons, I was like, which is worse, amputating a part of my body preventatively and then not having to go through all of the other things or amputating part of my body when I am already diagnosed with cancer and then also having to go through all of the other things that come along with a diagnosis like that. And so, you know, it's one of the reasons that I'm so passionate about this work and cancer vaccines and what it is we are doing at Cancer Vaccine Coalition. And it happens to be, you know, simultaneously with my whole story and journey and what we were doing was the first time that I learned about cancer vaccines and had heard about this. And so it was all kind of just happened. I feel like my life changed and did a complete 180 within three months.


Sara Kavanaugh

Wow, yeah, yeah, that's great, though. I mean, you flip that narrative right around and said, I'm not going to feel sorry for myself. I'm going to be proactive and do something about it, which is amazing and admirable for sure.


Aliza Friedlander

Well, thank you. 


Sara Kavanaugh

Well, let's talk about the Cancer Vaccine Coalition. You've been involved since early 2024. And for listeners who may not be familiar, why don't you fill us in on the coalition's mission and how it's different from traditional cancer research efforts.


Aliza Friedlander

Like you mentioned, I have been involved since early 2024. So simultaneously with me going through all of this stuff, my sister getting a breast cancer diagnosis, me finding out I am positive for this genetic mutation, and then waiting for my diagnostic MRI results, because I am a journalist and former morning show producer and in the communication space. I always have the news on in the background. I always am watching TV, consuming news, things like that. So I had the Today Show on one morning in January, the end of January, and heard as I was walking from my living room to the kitchen, like this voice on my TV being like, I'm leaving my dream job to start an organization for cancer vaccines and breast cancer vaccines as a breast cancer survivor. This is what I want to do in my next steps and I was kind of like rewind like I'm sorry what she just said on national tv she's talking like I'm like breast cancer vaccines what is she talking about like I had never heard of this and again I just spent however many minutes you've been listening to this now talking about how I was very involved in this space as a patient and very informed, talked to my genetic counselors, talked to my doctors, was not uneducated in this space and had never once in my life heard of a cancer vaccine or a breast cancer vaccine. 


 So I did what any producer would do and I tracked down that voice and rewind the story. I was like, okay, what is the story? Let me see. Cause I missed the actual piece that she had done. And I just heard her interview on the sofa, you know how after sometimes they do these interviews, like they do the live piece of the segment after you do the story with the researcher and the doctor and stuff. So I rewound it, listened to the whole story, got the name of the correspondent, which was Kristen and found her on LinkedIn and a few other emails in a few other places and send her a few emails and a LinkedIn message. And I was like, this is what's going on. This is who I am. I just saw your story. My sister's going through this. This is what we're going through. I would just love to know more about what these are, not even about the organization, not about what you're doing. Like what are these breast ca ncer vaccines and what is this that I need to know? And so she responded to me on LinkedIn, which I'm so grateful for. got on a call.


Sara Kavanaugh

And we're talking Kristen Dahlgren.

 

Aliza Friedlander

Yes, Kristen Dahlgren. So she is the founder and CEO of Cancer Vaccine Coalition. And she was a former Today Show correspondent and Nightly News correspondent at NBC. And so Kristen responded to my LinkedIn message, which I'm so grateful for. We got on a call and just hit it off. And I was like, I will do anything and everything to help you and to be involved in this.


I need to know more, other people need to know about this. And in that initial phone call, she had actually said to me, there are clinical trials underway for patients who are BRCA positive. Would you be open or interested in learning more about it?


And at that point I was like, no, because I had already, by the time we had talked and by the time I saw this story, I had already made up my mind that my only path forward was this now prophylactic mastectomy because of what my sister was going through. However, it really, really upset me that I didn't know about this before, because if you had asked me, two years ago or four years ago or six years ago, would you be interested in maybe participating in one of these clinical trials? I would have 100 % gotten myself tested and figured out what it was and see maybe there was something that I could do to do it. One of the main reasons I did not get tested was because I saw no path forward for preventing or reducing my risk other than massive surgeries and massive impacts to my body, both internally and externally. And I wasn't ready to face that or do that. If somebody had said, oh, here's something else that maybe you could do, or here's another path forward, I'd have been like, oh, okay, that one I could maybe get on board with, you know? And so these clinical trials that are underway that she was telling me about are for healthy BRCA positive patients. And so I'm not considered a healthy BRCA positive patient anymore because I had the surgery. So even though I haven't had cancer, I'm not eligible for one of these clinical trials because I don't have the breast tissue.  So I'm not considered healthy in the sense of the clinical trial term. 


And so that was what really got me fired up was I was like, I've been in this space for 10 plus years. I'm a journalist. I've written stories about this. I've talked about it. Nobody has ever mentioned this. It took me, happened to having something on the TV to be like, ⁓ here's something. And Kristen was in a similar position where she was a breast cancer survivor and had gone through, has gone through treatment and is a medical correspondent and has been at NBC News for 30 plus years. And she too, learned about cancer vaccines through reporting within the last two-ish years, give or take. And so, you know  that's what really got me going. And I was like, I'll do anything that you need. Like sign me up. I am on board. And I ended up letting go of all of my other clients that I had through my communications agency business and volunteering full time all of 2024. So as soon as we started talking January, 2024 until January, 2025, where now I'm working with the team, I was a full-time volunteer and it was a full-time job, full-time volunteer can do this because of passionate I am about it. 


Sara Kavanaugh

That's some serious commitment. That's amazing. 


Aliza Friedlander

And I think you asked what differentiates us. I think it's the, you know, we have a sole focus. We have a mission. We are focused on cancer vaccine research, accelerating that research, getting the data, getting the information so that we can get these treatments to patients faster.  They'll be here in the next 50-ish years. They can be here in the next 10-ish years, maybe even less, if you have the right awareness, if you have the right support, if you have the right funding, if we can get people into these clinical trials, and if people know about it. You know, can’t get upset about something that you don't know exists.


Sara Kavanaugh

Yes, yes, you need to create that demand. And if people aren't aware of it, how are they, how is that going to drive the demand for this for people to push more?


Aliza Friedlander

Exactly, exactly. we, so that's how we differ. You know, a lot of other organizations are raising money for research and have some vaccine arms. We are solely focused on cancer vaccines and the next generation of cancer treatments. And that is the research that we are funding. We are funding it and focused on late stage research. So these are clinical trials right now that are for patients. So phase one, phase two and phase three, humans are receiving these cancer vaccines. I have a friend who's gotten a breast cancer vaccine. is in a phase two clinical trial right now for a breast cancer vaccine. T hese are real, it's happening now, it's not science fiction, and we need to raise awareness, we need to talk about it, we need to educate, we need to fund it, and we need to support the science and the researchers that are seeing such promising and amazing results so that we can get the data and the information that we need so that we can get these to patients because they don't have time to wait. We don't have time to wait and sit around and see what if.


Sara Kavanaugh 

Yeah. That's right. love that.  it's so forward thinking. And it's a difficult time to be thinking when there's all of this kind of scaling back of medical research. It's, I can imagine that's a bit of a struggle that you may be up against in the environment right now and I'm not gonna make this political. I don't wanna make it political. But being at a time when there's not a hundred percent focus, maybe pushing aside some of the moonshot project that was with the previous administration, where's this falling and what are some of the potential barriers or limitations maybe that you are facing? Like you said, we need awareness, we need to create the interest and demand and that sort of thing. So what are some of those barriers that you can speak to?


Aliza Friedlander

So honestly, we are so hopeful and this is a time that I think there is such opportunity and I think it is up to us to take action and look at what those opportunities are and what can we do to support those and fund those. One of the beauties of Cancer Vaccine Coalition is that we are an organization that is bringing together all of the researchers in the cancer vaccine space and the science and breaking down these barriers and having doctors and researchers and scientists collaborate and help each other and say what it is they're seeing in their labs and then across the country what you're seeing in a different lab and bringing everybody, you know, under one roof to work together and to collaborate so that we can move this forward.


So we're able to support and raise awareness around the most promising research that is taking place. And we're raising money to do that so that we can have these, know, private public partnerships, I think, and utilizing what it is that we have at our disposal to keep the momentum going forward and to continue the progress and the research so that we don’t see things come to a stop because there's no need for it t o come to a stop. We can continue to support the science and support the research and you know everybody we talk to is so excited about this and doesn't want cancer research to be impacted or and when I say everybody, I mean everybody, all levels from the patient all the way up to Washington DC. The head of the NIH went on Fox News a couple of months ago and was talking about the excitement and the progress being seen with cancer vaccine research. It really is an opportunity and we are really hopeful that this is a mission that we can all come together and push forward because one in two of us will be impacted by cancer. And so, you you talk about barriers and yes, change is not always easy, but the response and the excitement and the hope, I mean, that is really the hope that this is providing to people. And I see it every day is just next level that it's an opportunity, I think, for us to all come together and collaborate and really push this progress forward.


Sara Kavanaugh

Okay. Well, so that concept of a cancer vaccine, it's, you know, it's always seemed out of reach and   you're sharing all of this hope and excitement that this can happen hopefully sooner rather than later, but it could be a little confusing for people. And you've also referred to it as a treatment. So can you explain sort of the cancer vaccine overall? Like I know you're a storyteller, not a scientist, but can we put it into terms maybe that we can understand and then also referencing it as a treatment. So fill us in on that.


Aliza Friedlander

Yeah. So essentially these are being utilized as a way to train and unlock our immune systems to recognize the cancer cells. And so because we have such advanced technology now and because we have more knowledge on, you know what causes some of these cancers or the neoantigens or the proteins that you have to target and some new and advanced information. are able, doctors, from my understanding and scientists are able to target what it is that's causing this cancer. And these vaccines unlock and train your immune system to recognize the cancer cells  without targeting the healthy cells. So right now, chemotherapy, for example, kills off all fast growing cells. Cancer is a fast growing cell. It evades the immune system. It's tricky. These cancer vaccines are  training your immune system to recognize the cancer cells without necessarily impacting the healthy cells. These are still being, like we said, in clinical trials. So we're not 100 % sure how they're gonna look and what exactly it is gonna be. They will most likely be a polytherapy, so not necessarily the only thing that you utilize but they become a tool in your toolbox for when you are either diagnosed with cancer, if you have already been diagnosed with cancer and gone through current standard of care treatment as a way to reduce your risk of recurrence, or to target some of these genetic mutations or high risk populations. So in the simplest term, this teaches your immune system what to look out for in terms of cancer. 


Sara Kavanaugh

Wow.  Yeah. I briefly remember coming across how the development of the COVID vaccines with the mRNA technology is something that may have helped, and correct me if I'm wrong, but one, it got people interested in using mRNA-   types of vaccines and that it could be used for cancer, like they're testing this from a cancer perspective. Is that accurate to say? Is there a connection here?


Aliza Friedlander

So they were using this technology for cancer vaccines before it was being utilized for this other group of vaccines. So yes, this technology has been being created and utilized and there are a few different ways and the few different technologies. …and Kristen is really good at explaining this side of things. But yes, it has been, and cancer vaccines have been in development for many years. You know, we have talked to a patient who had a cancer, was part of a breast cancer vaccine clinical trial 20 years ago and was given a 7% chance of survival. We talked to her a couple of months ago and she has never had a recurrence. She has gone on and lived her life. She was told to go home and get her affairs in order. She had a 7% chance to survive. So this was late stage, HER2+ breast cancer and 85% of the women who were a part of her clinical trial who received the optimal dosage of this breast cancer vaccine are still alive 10+ years later. The median survival age for what they were diagnosed with was five years. The median survival time, five years. 10 plus years later, 85 % of them are still alive.


REF 


Sara Kavanaugh

That's amazing.


Aliza Friedlander

So this is stuff that's been happening and we just, you know, you can't unhear it. 


Sara Kavanaugh

Yeah. Well, and likewise, when I came across Kristen, I think it was probably either on LinkedIn or yeah, it was probably on LinkedIn. I think we initially came across this and you know how sometimes it will give you your recommended people to follow. And Kristen came up and like the Cancer Vaccine Coalition and that obvious ly that got me connected to you. And so obviously it piqued my interest as somebody who is a previvor and is open to, you know, exploring the vaccine story, that is significant. I mean,  this could be a game changer for so many of us that are facing these risks.


Aliza Friedlander

So many of us, I mean, it would be life changing. You know, for me personally, I have three daughters. They have a 50-50 chance of having this genetic mutation. In hindsight, knowing now what I know, do I wish maybe I had done something about it in 2013? Yeah, like having a prophylactic bilateral mastectomy, any type of mastectomy is not fun, like not, it's zero out of 10 recommend, but better than the alternative.


That's not how we should live. We should have the best of the best. It's the year, it's 2025. We need these modernized standard of care treatments. And I need it for my daughters. I need it for my sister who has a high risk of recurrence. Like if we can raise money and fund a vaccine trial for her subtype in a recurrence prevention, she would be you know, she'd be first in line. She has said, aside from the health of my family and my husband and my child and like our current health, there's nothing more that I would want than a cancer vaccine. Like literally nothing more that she would want.


Sara Kavanaugh

That's great. Wow. All right, well, what progress or partnerships or things that you're most excited about within the organization right now?


Aliza Friedlander

So I think I'm just most excited about what we're doing now, talking about it, raising awareness. We have funded the expansion in partnership with the V Foundation of a clinical trial where we've been able to increase the amount of recipients by over 50%. So that was our first grant that we've given out. We're really excited about that. And I think it's, know, working with all of these institutions and hospital systems and researchers and doctors,  we bring them together, they share what's going on. When you listen to what it is these medical professionals and doctors and researchers are seeing and doing and the results. I mean, it is mind blowing. I come to it from a storytelling perspective. So I'm learning the science, I'm learning the research, I'm learning all of this and… I said, you just, cannot unhear it. You cannot unhear the excitement. I had an event for my community here in Baltimore a couple of weeks ago when we had an  oncologist talk about, you know, liver cancer vaccines that she's working on and that in her clinical trial, there have been a handful of patients and that have gone from having a year to live and have been on hospice to four years later are still alive, have gone on to get married, are living their lives. And so you hear these things. I mean, it's just, it's this collaboration. It's having this hub. It's having an organization that we can see where the money's going,   the research that's being done, the results that are being made, the living proof that we can see people who have had these cancer vaccines and what's going on excites me so much. I mean, it is It's crazy and amazing. It makes me speechless almost because I don't even know what else to say other than you hear it and you can't unhear it and everybody I talk to has the same reaction  my god. Let's do this.


Sara Kavanaugh

For sure. All right. Well, let's shift gears a little bit back to you and the work that you're doing. So your PR background gives you this rare perspectives on health stories and science and how it can reach the public. Clearly the last year plus you have spent taking the Cancer Vaccine Coalition's story and personalizing it. I mean, clearly it resonated with me and caused me to reach out. What do you think just in general terms are some of the biggest challenges in communicating complex topics like this, right? Or like genetic risk or cancer vaccines? Like, what are some of those biggest challenges and maybe people who are like advocates who struggle to communicate some of these complex ideas? You know, how do they share their stories?


Aliza Friedlander

So I think health communications and sharing these complex ideas is always a challenge. And I think it is one of the biggest challenges for so many people, both advocates, organizations. I think that's, know, Kristen's secret sauce is sharing stories and disseminating information in a way that people can understand it. I think that's what drew me into the organization - was her and her infectious way of explaining this and talking about it.


And so I try and really learn from her and that I think figuring out though, you know, what the main point is that you wanna talk about and repeating that point. And I too struggle all of, I too struggle, cause I wanna get out all of the information and I wanna share so much and I wanna be like, and this is the science and these are the antigens and this is the complexities and this is the definition of what this means.   And at the end of the day, what is it that's going to resonate with somebody and what is it that's going to make them want to listen? And I think communicating the most basic piece of the information without feeling like you need to get into the weeds with everything is so important because I think for the majority of people, they're going to be, we're hooked with one piece of information. And it's probably a piece of information that the majority of us don't know. And so there's so much that we can talk about when it comes to cancer vaccines. There's so much we can talk about when it comes to genetic mutations and hereditary cancers and what you can do. But what is that the biggest thing that we want people to hear? What's the biggest piece of information and what's that feeling that we wanna evoke? Because that'll be what hooks them in. And then once they're already in, then we can go down that rabbit hole of all of the other details and information and everything. Like you don't wanna overwhelm somebody with so much information before they're even hooked in to what it is that you're doing. So I think it's leaning into the emotion, evoking a feeling, and honestly starting with, I think storytelling is the biggest tool that we can use. mean, it's going to be much more motivational for somebody to listen to me and say, let me introduce you to one of my closest friends who has gotten a breast cancer vaccine. You're like, I'm sorry, what? Now I want to hear more. Like you have put a face to this abstract concept. You hear her story and then you want to know more about how it works and then you get down to the nitty gritty and the detail. 


 And so I think when it comes to health communications, that is the biggest struggle is not getting stuck in the weeds with every piece of information that we want to share.  And I've noticed I was much better at doing that before I became more knowledgeable about all the information and the science, because you want to share the science. The science is really cool. The research is really exciting. It's really awesome.  It's really hard to understand and it's super complex. I think probably the majority of people want to hear the story and want to see how it's going to impact them, what it means for them, hook them in that way and then sprinkle out that information, I think.

  

Sara Kavanaugh

Yeah. yeah, no, I agree. And I think that's sometimes a challenge of, you know, advocates or people that are sharing their stories online. You know, I had a question here that I was initially going to ask about, you know, people not feeling overexposed by telling their stories potentially, because we're revealing some personal information. And I've always said not everybody needs to share all the details that we share on this podcast. But for those that are, what are maybe, what's some advice that you might give to those folks or for those that are interested in being an advocate or being a storyteller online, what are ways that they can do that effectively?


Aliza Friedlander

So I think it's much harder to always share your story than it is to share other people's stories. And so I really still struggle with this. And I have a hard time knowing what pieces of information to share, what not to share. That's something that I'm working on is speaking in soundbites and not necessarily sharing every detail of everything. But I think…It's a personal choice for everybody. And I have friends who are BRCA positive who have chosen to not tell anybody and not share anything. And they've gotten involved in some of the work that I'm doing and come at it from a different direction. And people still don't know that their connection to it. And then you have somebody like me who I'm an open book. And like I said, it's almost like a, “Hi, my name's Aliza and this is who I am.” I still struggle with it though. And I think it's really hard to know what pieces of your story to share and what pieces of your story to tell and when to do it and how to do it. And so I think the piece of information that people.  Advice that I always get that I'm not great at doing for myself, but I'm gonna now relate to every...else is to give yourself grace and to only share what you feel comfortable sharing. think at the end of the day, it's a personal choice. 


Now I will tell you or I will say that what I've noticed is for myself, it's very healing and it's very therapeutic for me to talk about this. I know I mentioned at the very beginning, I have a lot of anxiety around health. have a lot of, you know, these are complex feelings. It's incredibly therapeutic for me personally to write about my story, to share what's going on, to talk about what's happening with other people, to have a community of other people who have gone through it. And I think it humanizes me in a way that people feel very comfortable. I notice that like a lot of times I'll start and by the end of the conversation, they'll be telling me their whole life story as well. 


And so I think it's, you know, finding that happy medium of what it is you feel comfortable having in the public and what you want to keep more private. And I think that you can do both. And I don't think that you need to share your entire story. I share a lot of my story. I'm sure there are probably subconsciously things that I keep private that I maybe haven't mentioned or that I haven't shared. I can't think of them off the top of my head, but I'm sure there is. And so I think just giving yourself grace and looking at this as, you know, the other thing is sometimes I feel like I'm being like self-centered or like, do people really want to hear my story or should I talk about myself? I think that's a lot of what people hear or sometimes I get sick of hearing myself talk. But then if you step back and think about it, like again, this is an opportunity to give somebody some information in a humanized way that's not clinical, that's not statistics that could then help them move forward with something that may change their life. It's the same thing with Cancer Vaccine Coalition and, know, fundraising and using storytelling for that side of things. This is an opportunity for somebody to get involved in the future of cancer treatment and prevention and like what this next generation will be able to have thanks to what we are all doing right now. And so looking at it as a way, like coming to it from like as an act of service almost as opposed to this is my story and I'm just gonna talk about myself has been a reframe for me.


And I have noticed, like I have people who are like, I could name you a handful of people now off the top of my head who I know who have been sitting on their genetic mutation, haven't done anything and have since had these prophylactic procedures or even just made appointments with doctors since I've had mine in March. Now I don't think it's necessarily because of me, I think that this is something that people have been sitting on. You know, I sat on it for 12 years and I heard people's stories and I saw different ways of going about it. But I think everything from being able to talk about the experience to being able to give like doctor recommendations or like me sharing my experience with my doctors or what that's been like and it was helpful for me. I met friends, I met people in the three months or the 10 weeks of getting tested to making this decision. I talked to like two or three people who shared like the doctors that they went to and what their experience was and showed me like showed me their boobs if they wanted, if I wanted to see them so that it was much more tangible and it made it like much easier for me and I've been able to do the same, think, paying it forward to a few others. And I know they're now doing it to others. And so I just think it's...I think the beauty of sharing your story is that you never know who out there is going through something similar and maybe doesn't have the support system to talk to about it. And sometimes it's easier to talk to a stranger or somebody that you're not as close with about something.


Sara Kavanaugh

Yeah. Yeah. Yeah, 100%. And you're right. When when you take a step back and you realize, I'm telling the story, my story,  not for me, but for everybody else, it's gonna, it's gonna have an impact. You're absolutely right. It's great.


Aliza Friedlander

Yeah, it does.


Sara Kavanaugh

So looking back on your journey from your eventually getting the BRCA1 testing to now becoming this vocal advocate for the cancer vaccine story, what has surprised you most about how your stories evolved in that time period? What surprised you?


Aliza Friedlander

I think my passion around it and my willingness to talk about this and face it head on. You   know, again, I go back to this feeling of anxiety and I know a lot of people have anxiety in life and this is something that I always talked about before and I talk about now, but having health-related anxiety and then watching your sister go through cancer and you have to go through all this health stuff and having this like fear of illness and then being like inundated with it head on can be a lot. I think what surprised me the most is my willingness to take this now head on and no longer sort of live in that fear and more live in this realm of - I am going to talk about it.  Just because I talk about it doesn't necessarily mean it's gonna happen. But if I don't talk about it, it doesn't necessarily mean it's not gonna happen. I'm gonna take action and I'm going to do everything that I can to make sure that what I have gone through and what my sister has gone through and what so many people around me have gone through maybe isn't what my daughters are gonna have to go through. Or maybe isn't what we're gonna have to go through in even 10, 15 years from now. Like in our lifetimes, we could see a change.  Every treatment that we have right now for cancer started with this process, clinical trials, research, to then get to the patient. 


What we knew in 2013, when I first found out that I had this genetic mutation, to what we know now is so drastically different, I can't even believe that it is the same genetic mutation and the same world that we live in. And that is only, that is less than 15 years. So look at how much we can do in 15 years when it comes to raising awareness, funding research, talking, sharing. I mean, my children, are gonna have such a different experience if they are positive for this genetic mutation, than I had. so I think that's the thing that's surprised me the most. 


And honestly, finding an organization that I am this passionate about. I have been in this for so many years and there are so many organizations out there and there hasn't been a ton for me personally that feels like it's really resonated in this like, I don't want to say visceral way, but in this way that I was like, as soon as I heard Kristen's story on the Today Show, and this was 2024, I was like, this is the organization that I will be putting everything behind, both time, financially, and I've seen over my life, like, I mean, I've seen people have events and do fundraisers and are volunteers and very passionate in all of these different types of organizations, both cancer research organizations, but other nonprofits. There hasn't been a single organization until this one that I will do literally anything and everything in order to, like, come hell or high water. Like, I am in this. And I think that's what surprised me the most is finding something that I feel so passionate about. And I've been looking for years, you know, I started my career as a journalist and a morning show producer, and then I left that to be a stay at home mom. And I love doing that. And I would stay at home mom. And then I got into print journalism and doing writing. And then I have like a communications background and PR and had clients in that space and thought maybe it was the parenting space. I've been looking, I think, forever for something that I feel so passionate about that I'm like, this is my purpose, this is my mission. Like, this is what I need to do. I will like put my name behind this and put my name behind Kristen and Cancer Vaccine Coalition like all the way. 


And everything I do, I think I now have in that frame and that mindset of like, is the reason. Like this is why my grandmother found out on a fluke that we have this BRCA genetic mutation. This is why I went through these like 10 plus years of trying to figure out what it was I was gonna do and my journey and how I could help people or what it would be look like. It  sounds so silly, but even I say I did my life almost reversed   I feel like my generation, so many people like have gone through their careers and then had children later in life. I had my children really young and pretty early in life. And now I'm building up this side of myself as well. And like, I think this is why, like that was the journey that I went on. So I think that, I mean, this was a ramble. hope you can cut it into a movie. Cut it into a way that works.


Sara Kavanaugh

No, no, no, that's okay. Yeah, no, it's beautiful.


Aliza Friedlander

But I think that's what surprised me the most is finding something that I'm so passionate about that allows me to be so involved, so excited and make a difference while also being home with my kids … they understand it and like they tell their friends, ⁓ there's a cancer vaccine and my daughter wrote us like for her writing workshop class last year, they had to do like, what do you think the world will look like in the year 2070? And medical innovation, then there will be a breast cancer vaccine because this is what it looks like. And she did all this research on it.


Sara Kavanaugh

That's amazing. I love that. And you're right, you went through that journey so that your kids could experience that joy with you and that progress and maybe one of them will end up going into science or research because of the work that you're doing today. Wouldn't that be amazing? 


Aliza Friedlander  

It would be amazing, I hope so. Or yeah, or public health or nonprofit, yeah, so.


Sara Kavanaugh

That’s great. If you could leave our listeners with one message about either taking control of their health like you did, or supporting innovative research, you know, what what are some things that they can take away from our chat today?


Aliza Friedlander

You can take a few things that I would love people to be able to take away is to make sure that whatever decision that you're doing, making or whatever way you're going, you're doing it with the guidance and advice of the people you trust. So those who are in your trusted network, whether that's your doctors, your families, genetic counselors, whoever it is that you feel are is your sounding board, you're making the decisions that work best for you based on the information that you are getting. There's a lot of outside noise out there, so it's really hard to not feel like maybe you're making the wrong choice or the right choice. And I think at the end of the day, this is just a personal choice that you have to make for yourself. I think be open to hearing what people have to say to you. 


And I think people have strong opinions. And I know that I have really strong opinions for my sister. And I share those opinions because I don't want her to, I don't want to ever feel as though I'm holding something back and not giving her every piece of information that she has. But at the end of the day, it's a decision she's gonna have to make for herself. These are decisions that I had to make for myself. 


Try not to regret the decision that you make, there is no right or wrong, I don't think. And hindsight is 20-20. Again, if I knew in 2013 what I know today, my decision would have looked very different and my journey would have looked very different. That's okay.  


I feel guilty. I do a little guilty. I've actually never said that out loud. So breaking news here. I do feel a little guilty that I maybe didn't do something sooner and didn't find out or maybe chose this. But I did it with the information that I had at the moment. 


And that's what I think is so exciting about progress is that, you know, in 2013, I wouldn't have necessarily been able to make the same choices that I would want to if I had found out now, because I wouldn't. I wouldn't have been able to because we didn't have the same information that we have now. We didn't have the same technology that we have now. We didn't have the same resources that we have now. And that's what happens as we progress and move forward. And that's the same with cancer vaccines and these new generations of treatments like what we have today is different than what we had 10 years ago or 15 years ago. 


So we need to keep it going and we need to do it at an accelerated rate. We need science to keep up with technology so that we can get these to patients faster. So I think those would be the thing make the decision for yourself, but do it based on knowledge and information. And everybody says knowledge is power, and I agree with that. And I still think I made my decision based on knowledge. And it just wasn't the same decision that I think other people necessarily have made. And the knowledge that I had was my anxiety, my family history, what was best for where I was, the landscape of what the world looked like then in terms of this mutation. 


And for me, that knowledge made me feel empowered to choose not to get tested as opposed to maybe some other knowledge where sometimes people have said to me, well, of course you would want to know that you have this genetic mutation because knowledge is power. And if you have that power and you know that you have it, you can do something about it.  I think the fact that it runs in my family was knowledge enough for me because the truth is they will treat you as a, mean, everybody at this point, I think, assumes you're positive until proven negative. And so I think that also is the beauty though of knowing like for my sister who's super young, when she felt a lump, there was no waiting. There was no saying, it's just this. There was nothing like she had that knowledge and she was able to get into these one, two, three, like we're not messing around.


I would have been able to do the same thing. If I, forbid, felt a lump, I would be able to say the BRCA mutation runs in my family. I don't know if I'm positive or not, but it runs in my family. And I would have gotten in one, two, three also, even if I didn't know that, so making those educated choices for yourself, not regretting what it is that you decide. 


Okay, so yeah, what I want people to leave with, making educated choices that work best for you in the phase of life that you are in, not regretting your choices. And if you do feel guilty about it, acknowledging that hindsight's 20-20 and you may have made a different choice if you had information that you had, but that's not how life or the world works. And   finding something that you feel gives you purpose within the landscape of what it is that you are in, whether it is sharing your story, whether it's volunteering for an organization, whether it's starting a podcast, something that makes you feel fulfilled and that feels healing for you within this greater landscape.


Sara Kavanaugh

Mm-hmm. If you can share where we can learn about you specifically first because I know you have content out there as well.  And then Cancer Vaccine Coalition.


Aliza Friedlander

Yeah, so Cancer Vaccine Coalition is Instagram @CancerVaccineCoalition on Facebook, LinkedIn. Our website is cancervaccinecoalition.org. We raise money for awareness, research, education within the cancer vaccine space. You can find me on Instagram too, @AlizaFriedlander.  I don't put a ton of content out there because as I said, I'm not great at sharing my own story. I'm really good at sharing other people's but I'm really good one-on-one. I love talking. I love networking. I love answering any questions. Email me aliza@cancervaccinecoalition.org. DM me on Instagram, my cell phone number is in my signature.

 

Sara Kavanaugh

Awesome. Well, thank you. I really appreciate you being here. And if you are not one, like you said, to share your own story that you share it for others, I appreciate you coming here and sharing your story with me and my audience.


Aliza Friedlander

⁓ thank you. I'm trying to get better at it.


Sara Kavanaugh

Yeah, absolutely.  T hank you so much for sharing your story and helping us understand this incredible work that  the Cancer Vaccine Coalition is doing. This perspective that you provided us today and, you know, as somebody who has lived this experience, it helps us shape that conversation around prevention, which is ultimately what we're trying to accomplish is helping people know that there are means out there for prevention.


It really highlights how powerful awareness and innovation, science and research, which my audience knows I talk a lot about that and building that awareness around where people can find credible resources is key as well. So I love it when all of those things come together. And I think the story that you shared here and the work that the Cancer Vaccine Coalition is doing also accomplishes that. 


 For everyone listening, I hope today's conversation leaves you feeling both hopeful, but curious as well about what's ahead for cancer vaccines, cancer prevention and research. So you can learn more at the Cancer Vaccine Coalition. We'll have all of the links that we've mentioned in the show notes. 


Until next time, remember your story matters and sharing it can help spark somebody else and help them find their strength.


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