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HANNAH LIPPITT: Hello and welcome to the Totally Clinical podcast brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big-time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and, most importantly, the people benefiting from clinical research. So, tune in, settle back and don't touch that dial. It's time to get Totally Clinical.
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HANNAH LIPPITT: In this week's podcast, I'm joined by Ira Feinstein. When Ira was just 20 years old, he tested
positive for the BRCA1 gene which means your risk of developing breast and ovarian cancer is greatly increased. When the result came back positive, Ira went on a mission researching mutations and cancer – all the time waiting for research to come out about genetic testing. A mastectomy and hysterectomy later, Ira found himself navigating the complexities of the medical system as a trans man after he transitioned six years ago. Now, Ira is here to tell us his story today.
Ira, could you start by explaining more about your journey to testing positive for the breast cancer gene, how you coped and what you experienced during that period?
IRA FEINSTEIN: I had a somewhat unusual trajectory towards getting genetic testing at 20 years old. My mother died of breast cancer when I was 11 years old. I didn't know that I was trans then. It wasn't really the first thing that was on my mind
at that age. Her mother had died of cancer and my father's mother had died of cancer. And I kind of knew in that intuition that people have suddenly or somehow that it must have a genetic component. And that if I didn't do something drastic when I grew up, I was going to die of breast cancer. So, when I was 20, this was in the late 1990s, genetic testing became available, and I went and got tested. I had to convince them to test me because I was so young and because they didn't think that I had the mutation. So, they were very shocked when they found out that I was positive. And afterwards, it was kind of a relief. It was a relief to know that my intuition had been correct and that at least I had some place with which to act. Even though I realized shortly after getting the results that, especially in the late nineties, finding out you have a genetic mutation was kind of a one sentence. It ended with that. They could tell you that my chances of getting breast cancer were about 78% by the time I turned 70, but that was all they knew at the time. And so, I was left with more questions in the end than I thought I was going to be. I thought that genetic testing would be an answer, but it wasn't.
HANNAH LIPPITT: And so, what happened next?
IRA FEINSTEIN: Well, I spent the next eight years of my life researching mutations, researching cancer from – and I'm a layperson I'm not a science person at all. So, I have... I wasn't reading science textbooks, but just, you know, other theories, theories about how theories about nutrition, sugar, all the things like that. And I kind of waited for
research to be done on genetic testing. And finally, a study came out that said that I think it was 90% of the people who had genetic mutations, who got prophylactic mastectomy, did not get cancer. And that was kind of what I'd been waiting for, proof that a prophylactic mastectomy would really reduce my risk of cancer. And so, I went for it, and I had a mastectomy. And then a couple of years later, because the breast cancer one mutation also increases your risk for ovarian cancer by 50%, I also had a hysterectomy a couple of years later, but that was... oh I waited a little bit longer than that – I hadn't transitioned at that time, and I was scared what it would to be in menopause at the age of, I think it was 28 or 29 at the time, because certainly there are a lot of benefits to having your hormones and not being aged prematurely.
HANNAH LIPPITT: So that was a really big step to take at such a young age, and you obviously had to be very proactive. And back then, there wasn't so much information around. But fast forward to six years ago, I know you transitioned and as a trans man, it must have been really difficult navigating the medical community, especially when it's not really set up to support those who differ from perceived norms. Could you explain more about how you overcame challenges in the system?
IRA FEINSTEIN: So, when I transitioned six years ago, I lived in Portland, Oregon was which was kind of a mecca, if you will, for trans people. Healthcare is really set up to support trans people in Portland. All I had to do was write an email to my doctor who then sent me on to the sort of transgender clinic at the Kaiser in Portland, and they were very supportive. I had to go see a therapist and go through a few therapy sessions and then they gave me testosterone. I was unusual in that because
I had had the breast cancer one mutation, I already had a mastectomy, I already had a hysterectomy. So, a lot of me was already ready for that change. It was funny because before I transitioned, I had to take – because I'd had a hysterectomy – I had to take progesterone, I had to take estrogen, I had to take a little bit of testosterone in order to have a sort of balance of hormones, as I would if I were a woman. But once I decided to transition, I ended up only having to take testosterone. It ended up being simpler than trying to manage being a post-menopausal woman in my, you know, quote unquote “woman” in my 30s.
So, it was a very interesting and supportive experience, I think, living in Portland, and because the city is more welcoming and open than maybe many other places, that it felt like a very safe place to sort of molt. And as you will, as you go through those months and changes of transitioning can be a pretty vulnerable time. But it was a very welcoming and supportive time for me.
HANNAH LIPPITT: So that's great that you had such a positive experience. I know it's not necessarily like that for everybody. Can you highlight some of the gaps you feel remain in the medical community?
IRA FEINSTEIN: One of the biggest gaps I feel like is the forms. So as a person, I can go to a gender care clinic or a transgender clinic. The form is right. They know how to talk to you. They know how to interact. They've been trained to do that. But if you have any other issue, you're going into a medical community, maybe, for example, like a cardiologist or maybe a gynecologist who doesn't have that same training or the nuance of understanding in order to interact with trans people in a way that feels respectful. And sometimes you find yourself having to, you know, they ask you your gender and they ask you your sex, and then sometimes they get it except when they're talking to you. And it seems
like it's wonderful that we have these clinics that we can go to where it's safe and supportive. But there still needs to be, for specialists, a little bit more training in how to be respectful and to understand the nuance of gender in a way that most people don't have to interact with on a daily basis.
HANNAH LIPPITT: Could you explain more about some of those nuances?
IRA FEINSTEIN: I was 27 years old when I had my mastectomy. And I had an awareness. I had this dream when I was a kid that I kind of wanted a flat chest. At the time, I was thinking of these things. It didn't mean that I was trans. And I remember when I was getting my genetic testing done and realizing that having the mutation would give me this opportunity to explore my gender without ever having to name my gender identity or my gender confusion to the medical community. It was a way for me to get a mastectomy paid for through insurance without having to alert them that I was anything quote unquote “different” than what I presented myself to be. It would have been helpful at that time if I felt like the doctor, the oncologist was a safe
place for me to share some of my confusion and my thoughts. Because at the time that I had my mastectomy, I just got a complete mastectomy. I didn't have any reconstruction because I couldn't bring myself to have the conversation with the surgeon that maybe I wanted construction to look more masculine. Not that I'm unhappy with the way my chest looks now, but just something like that where it would have felt safe, but at the time I thought, if I have this conversation with this doctor, she may think that I'm crazy. She may think that I'm too confused to have a mastectomy. She could have thought any number of things and the power that a surgeon or any sort of doctor can have on your medical wellbeing and your mental wellbeing for that matter – it wasn't worth the risk. I think that there might be places in the medical community where the gray places overlap, where somebody can come in with a little bit more confusion and vulnerability and feel safe. And I don't know how much that aspect had changed in the last 20 years.
HANNAH LIPPITT: How frequently do you interact with the medical community now?
IRA FEINSTEIN: As little as possible. I needed an ablation about a year ago, and so I was dealing with the cardiologists and a couple of different cardiologists because I'd moved, and it was mostly good. And then I looked at my medical records because I was moving from one cardiologist to another, and I noticed that they had “she” all over the notes. And it was a very strange experience
because the doctor had been very welcoming and he had said he had worked with trans patients before, he had been respectful in person. And then I read my notes; I felt like somebody had punched me in the gut because my experience and then whether it was an accident that he had “she” on the forms or he told me that it was an automatic thing that had happened when he verbally put the notes in, which didn't really make sense to me at the time, you know, it just caused that distress to arise all over again. So, I go to the doctor for a few health things and then very, you know, once a year I go for to have my hormonal levels checked and things like that. But it's still... it’s a dicey place to have to go to walk down an allopathic healthcare path as a trans person. It can be good, and then it doesn't take much to undo all the good. And I kind of don't want to meet those moments head on. It's hard.
HANNAH LIPPITT: I see what you mean. So, you know, you kind of think everything's ok and then suddenly something happens and it takes you back to square one.
IRA FEINSTEIN: Exactly.
HANNAH LIPPITT: Yeah. I mean, I'm sure if you're having these experiences, then a lot of people are having them. Now, Teckro put together a report to address some of these problems with the Center for the Information and Study of Clinical Research Participation with recommendations around how to best engage LGBTQ+ patients in clinical research. I know you were involved with the advisory meeting, as someone who has this experience, this valuable experience. In the report, did anything particularly stand out to you?
IRA FEINSTEIN: After reading the report and thinking about the conversations we'd had when we were being interviewed, I was surprised with how
small things can be easily changed and make a huge difference, even if you just have it on the form that somebody signs in to acknowledge their gender, whether, no matter how that works on the back end, that might be more complicated. But that's a small thing that tells somebody I'm welcome here and that those small changes have been happening. And it's pretty impressive that we have so many people in the medical community being willing to address these issues and to learn about something that may be completely unfamiliar. Another thing that I thought about was how slow change can be, because if you think about it, when I read the report, what it really came down to is: “If I were a physician, is coming to each patient in a place of neutrality without making grand assumptions about who they are and what they want for their life.” And these conversations have been going on for decades as my wife now went to the gynecologist, you know, eight years ago, and because she has PCOS and she had horrible periods and she wanted a IUD put in, in order to see if that could solve the problem. She told the gynecologist, “I do not want children. This is what I want. I bleed.” You know, “There's five days out of the month that I'm not bleeding. Please help me.” And the gynecologist, instead of just listening to Anita, just said, “Well, you may want kids one day and you should talk to your partner about this,” and you know, “What if, you know, he might feel it when you have sex or things like that.” And Anita's partner was a trans man who could not feel it when they had sex. So, it was just things like that even if you take “trans” out of the topic, there's so many ways, small ways that the medical community puts their assumptions on all of us, which I can understand as a sort of shorthand, but it prevents medicine from being as healing as it truly could be. And these issues have been going on for decades.
HANNAH LIPPITT: So, if we fast-forward a few years, do you think that the medical community will have adapted to better address the needs of LGBTQ+ patients? You know, you’ve talked a lot about the problem, but have you seen strong signs of
change and the willingness to listen. How optimistic are you?
IRA FEINSTEIN: I do have optimism. It's in part because I can see that the effort the medical community is making to be more inclusive of everybody. And also, because I think patients are being more clear and more forthright about what their needs are. So, I think that as patients feel more empowered, it sort of evens the playing field a little bit to have a more honest dialogue. And as somebody who's been moving from Portland to Chicago to New Orleans to Tucson, which are all cities in the United States of varying sizes, I've noticed that there's clinics in every city that I've gone to for trans people. I'm not living in a rural area – that's a whole other level of inclusion that maybe will come down the road – but I do see communities creating places for trans people to get good quality health care and to be affirmed in their identity and to feel safe.
HANNAH LIPPITT: And hopefully as more and more companies and third sector et cetera start to engage more with the community, this can happen.
IRA FEINSTEIN: I can imagine that this will snowball and become more common and hopefully start to be more included in education for doctors, which I think it probably is at a certain point already, but maybe more so in the future.
HANNAH LIPPITT: And that's your dose of Totally Clinical. You can download our podcast on Apple, Spotify and Google. Please subscribe and leave a rating and review so more people can find the show. See you on your next visit and remember to bring your friends. Thanks for listening! Goodbye!
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