On this episode of the GOSH Podcast, we are joined by Dr. Mary Bryson. They talk about their project, Cancer Margins, which is the first nationwide Canadian research study designed to advance the understanding of how sexuality and gender shape the experiences of gynecologic cancer patients. They also share the importance of shifting away from the assumption that gynecologic cancer is a women's cancer in order to provide accessible and safe cancer care to all.
You can learn more about Cancer Margins on their website www.lgbtcancer.ca.
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
On this episode of the GOSH Podcast, we are joined by Dr. Mary Bryson. They talk about their project, Cancer Margins, which is the first nationwide Canadian research study designed to advance the understanding of how sexuality and gender shape the experiences of gynecologic cancer patients. They also share the importance of shifting away from the assumption that gynecologic cancer is a women's cancer in order to provide accessible and safe cancer care to all.
You can learn more about Cancer Margins on their website www.lgbtcancer.ca.
For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca
Where to learn more about us:
Twitter - https://bit.ly/3jsViHM
Instagram - https://bit.ly/3dRQsCF
Facebook - https://bit.ly/3knUgOw
Introduction
Thanks for listening to the GOSH podcast. Gosh stands for the gynecological oncology sharing hub in open space for real and evidence based discussions on gynecological cancers. We'll share the stories of guided cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecological cancers.
Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish and Tsleil-Waututh nations. It is produced by the Gynecological Cancer Initiative, a province wide initiative in British Columbia, with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecological cancers.
Hi I'm Nicole Keay and I'm Stephanie Lam and you're listening to the gosh podcast.
Stephanie
So welcome back to another episode of The Gosh Podcast, so we're very excited today to have the our guest joining us today, Doctor Mary Bryson. Doctor Bryson is a professor in the Department of Language and Literacy, Education and for the past six years they were the senior associate Dean Administration, Faculty Affairs and innovation in the Faculty of Education at the University of British Columbia.
Their funded cancer margins project is the first nationwide Canadian research study designed to advance our understanding of how sexuality and gender shaped breast and gynecological cancer, health knowledge, access, and its mobilization and health and treatment decision making, and implications for the design of care that is both medically and culturally competent.
So we're very excited to have Doctor Bryson joining us today and we're looking forward to learning more about gender, diversity and the specific impacts the LGBTQ+ populations experience in the context of gynecological cancers.
Nicole
All right, so let's just jump in.
Doctor Bryson, can you tell us about the work and the research that you do, such as cancer margins and why is that work so important?
Mary
Certainly thank you for that question Nicole, and thanks to both of you Stephanie and Nicole for inviting me onto this podcast.
So in my research, fundamentally I'm interested in human rights and pathways to knowledge and the professor in education and some people have asked me well, why would you be doing research in the area of cancer. And yet of course, cancer presents a fundamentally educational challenge for everybody, whether it's figuring out when to go for screening, when to, you need to put on sunscreen. There's an educational component when you're diagnosed with cancer.
The first thing that they do is hand you bags of books and things for you to read, so I'm really interested in the significance of minority status belonging to a group that, historically, systemically is disenfranchised and pathways to knowledge. In particular in the case of cancer margins for members of sexual and or gender minority populations.
Just to be clear what that means minorities sexuality, LGBTQ probably a few others, few other alphabet letters go along with that and then minority genders. So trans gender diverse nonbinary, and then of course other minority genders that are very important like 2 spirit, Indigenous populations, where gender and sexuality are differently organized than what we would call cisgender, and that's the kind of work that I do.
So Cancer margins is the first national study to look at, on the one hand, sexual and or gender minority populations and on the other hand, experiences of cancer health. Participating in screening those kinds of things, cancer treatment and how people develop support networks in relation to a diagnosis with one of two groups of cancers, typically referred to as the women, cancers, breast and gynecological cancer.
And what's really important about it being the first study is that there is a broad understanding in medicine of the importance of population health, and yet it's only in the last 10 years that there have been funded studies looking at minority sexuality or gender in relation to cancer.
Cancer is an incredibly broad array of health and treatment and diagnosis, and so it tells us that there was a long period of time when the existence of population differences in relation to gynecological and other cancers were systemically being ignored when the whole group of persons are being ignored in relation to a disease that let's face it, kills.
Many Canadians and people around the world will die of cancer certainly will be diagnosed with cancer. Cancer treatments are arduous, expensive. Then we know that there is an issue in relation to informational institutional invisibility.
And we know also because for example, it's still the case that cancer surveillance systems, every country in the first world tracks diagnosis with cancer along a variety of population identifications, but not sexuality and gender.
It takes a lot of work to ignore population-based data and it's also the case that medicine fundamentally is underscored by a commitment to being evidence based. And so if evidence of population disparities is being ignored, then we know that we have a problem that is systemic that's related to human rights. That's related to discrimination.
So it's very important for evidence based medicine to pay attention to population health disparities in areas like cancer. It's also the case that. Medicine in the 21st century is no longer on the fence around the importance of culturally competent healthcare, and so there's broad agreement that cultures are unique and that medicine needs to adapt in order to be responsive to the variations in cultures, it's also critical primarily in First world medicine. I would say that today there's also broad agreement for patient informed decision making in healthcare. So it's not the case any longer that the guy in the white coat comes into the room and says you have cancer, this is what's going to happen to you.
There's a broad understanding that there should be a dialogue. A conversation. Patients should be educated about their options and should be involved as partners in health care.
There's a cornerstone that patient, informed decision making operates on, and that's trust. If the context for cancer care for cancer health is one that is underscored by systemic discrimination in relation to in the case of cancer margins, people who are minoritized as a function of sexuality, gender we know that they are going to bring with them into that room. A long history of lack of trust. A long history of trauma that's going to interfere with patient informed decision making.
It's also the case that if the health care provider, if the oncologist, the cancer surgeon themselves, is uninformed about significant population characteristics for members of LGBTQ groups, then they're not informed. And if the specialist is not informed what's going to happen to evidence informed cancer care? What's going to happen to patient informed decision making? It's going to be a trainwreck.
And so the last 10 years has seen foundational studies like cancer margins. And then more recently, a great deal of research, a huge burgeoning of research specifically to begin to map out this area of sexual and gender minority populations and cancer care.
A couple of other things to put on the map here in terms of the why. We're in a unique historical moment where on the one hand, there's the largest ever population of people who identify as a member, either of a sexual minority and or member of a gender minority, and at the same time, those folks are somewhere between the ages of let's say 20 and wherever would be the endpoint on that spectrum. Right now there's lots of people who are in the 50-60 year old cohort who are the most likely to be diagnosed with a gynecological cancer.
And if their LGBTQ+, are likely to be old enough to have experienced the full gamut of discrimination in their lifetime from simply being invisible to being assaulted in one way or another to being kicked out of their families, to having no capacity say for a trans guy with a vagina going for PAP screening, no opportunity to indicate on that intake form that they are a man with a vagina and so there is a coming together historically of a lot of people who are public about being queer or trans. And at the same time, the healthcare systems, the cancer care, screening, diagnosis, treatment. The gowns, if it's breast cancer, the gowns and the mammography clinic, could still all be pink. Like it could be a trans guy or a non binary person who doesn't in any way identify with pink gowns and so the health care system has not caught up with those folks. Which means that we need to document the experiences that people have who are members of sexual and or gender minority groups in all of these aspects of cancer, health, cancer treatment and diagnosis. Living with cancer, living with metastatic disease and how people form support groups.
Stephanie
Doctor Bryson, thank you so much for that. There's so many pieces to what you just said and every single time you come onto a platform within the GCI, I'm always learning new things and I think you've always managed to just highlight how important it is to shift our systems to make sure that we're not creating invisible populations and making sure that our health care system is directly serving the people who are getting sick with these cancers.
I'm I'm very curious about specifically the cancer margins project you know, can you share more about what? What the project was and like what specific learnings that you and the project came out with.
Mary
Sure, So what did we do? We interviewed 81 breast and gynecological cancer patients across Canada and so we carried out interviews in six provinces from West to east all the way from the West Coast to the East Coast.
We interviewed gynecological breast cancer patients who identify as members of sexual and or gender minorities. We broadly focused on people histories as members of sexual or gender minorities in order to understand people experiences of cancer, health and treatment. You need to know something about what their sexuality, what their gender means to them.
And actually, a lot of the questions that we created for these interviews, or questions that it would be really useful for physicians and nurses and support workers who are involved in cancer treatment, also to ask if you're doing.
If you think that you're doing patient, informed decision making and you're talking to somebody, say about surgeries related to uterine cancer, or vulvar cancer or ovarian cancer, but you don't know anything about your patients own understanding of their gender.
Let's say, how can you really understand their decision making because their decision making is going to be in some way based on their own understanding of their sexuality and their gender.
So the first part of the interview asked people to tell us what matters to you, what's important to you about? About your sexuality, about your gender, and anything else. So I'll just briefly say that we took an intersectional approach. And so we recognize that sexuality and gender are going to mean different things to people as a function of other aspects of how they see themselves, how other people see them, particularly racial identification, Indigenous identification, identification assomeone with a disability, their age, their broad income group whether or not they are parents, and so on and so forth.
And then we asked everyone questions about the full gamut of cancer, health, and so we asked them about their participation in cancer screening about their diagnosis with cancer, about their treatment for cancer, how they made decisions, what were their knowledge pathways? How did they inform themselves about decisions that they needed to make? And finally about their access to Cancer Support, what did their support network look like?
If you know, for example, that members of gender and sexuality minority populations are more likely to be kicked out of their family of origin, their biological family are more likely to be estranged from their family. And you know that biological family typically provides a great deal of support to cancer patients then you know that this group will have particular needs heightened needs when it comes to support, and yet Cancer Support groups may still be organized along very normative lines. And so if you're say a non binary person who has had various treatments in relation to one of the gynecological cancers then you may find yourself in a support group where there's an assumption that everyone identifies as a woman that this is a woman cancer. That what brings us together is that we're all women, and yet that person may not in any way identify at all as a woman. Something as simple as pronouns. They may be misgendered constantly in the support group and leave after the 1st or the 2nd gathering because it's not a welcoming place for them. So we asked people questions about all of these things.
We also carried out interviews with members of support networks as well as physicians and others involved in providing cancer treatment. You've asked me about what about our major findings. So let me just tell you about our major findings. We found that minority stress and an enduring history of stigma linked with sexual and gender minority identification is length that people brought with them into the process of cancer diagnosis and treatment, and that the problems are not problems that are uniquely vested in the cancer patient themselves.
So the minority stress analysis allows us to understand the individual, but these individuals were also encountering a system of care that was replete with significant barriers, so whether it's the pink gowns, whether it's the forms that don't allow people to identify important information about themselves, whether it's the questions and the assumptions of care providers. Gynecologic cancer patients were dealing with the challenge, a very fundamental challenge that their care providers were probably completely unaware of.
They had at least two challenges. They had the challenge in relation to disclosure, so we know from our interviews that one of the fundamental challenges that sexual and gender minority cancer patients faced was simply being. Uh, being what shall I say? Being open being accurate, being open and accurate with their care providers about who they are.
So imagine all the difficulties all of the emotional distress around having a diagnosis of, say, ovarian cancer. And not being clear with the care provider team about your identification. And so people were worried that if they were to say that Julie, who came with them to the appointment, is actually their partner, or if one of the care teams they said something like, well, bring your friend into the room. But Julie is actually the partner of the cancer patient, then from that point on. There is a barrier to clear and effective and competent communication, so to get back to what I was saying in the beginning. If patient, informed decision making relies on that bedrock of trust and clear communication, effective communication, this was already a problem for patient. It's also the case that on the provider side, on the context side that there was nothing in the environment that made it clear to patients that the care that they were being provided had been thought through in such a way as to be inclusive, and so say. Cervical screening was not inclusive of the likelihood of gender diversity on the part of our participants. The core assumption was that pop screening would be provided to women, the posters or whatever it is that were in the in the office did not identify the range ,the diversity of patients that we interviewed in our study.
And so. The sheer fact that people were constantly struggling with issues of safety with histories of trauma was an unrecognized aspect of cancer care across the continuum from participating in screening to making decisions about surgery or other treatments, chemo to support group.
The the classification of gynecological cancers as women cancers was extremely problematic, particularly for our trends or non binary or two spirit cancer patients. Literally, we had trans cancer patients who were escorted out, asked, told basically, why are you here in this clinic? This is a clinic for women cancers and of course they were the cancer patient so. The fact that all of the decision making all of the diagrams that are used by cancer experts in assisting patients with cancer decision making say around hysterectomy or oophorectomy, surgeries in relation to gynecological cancers, really interfered with evidence-based medicine for our patients.
It's the case that patients who were members of sexual and gender minorities were very aware of experiences and stories from their community in relation to transgender healthcare, and so for those folks who are identified as female at birth or presumed to be female, we could say today for those patients, regardless of whether they then self identified as transgender, they were very aware that's a hysterectomy or oophorectomy is at least two things: Treatment for gynecological cancers, specifically uterine cancer ovarian cancer and it's also gender affirming healthcare, and so, whether those people identified actually as cisgender or as transgender, they were very aware that these surgeries have profound cultural implications for their gender identity.
And this is important. It's really important for cancer surgeons to be aware of these issues. It's really important for people who are leading Cancer Support groups, because this is another layer that patients are wrestling with that is very relevant to their decision making. For some people this actually facilitated their decision making and so they were not themselves transgender. But they were able to say, well, it's part of my queer and trans community that gender is understood to be more flexible, and I've never really had a typical identification as a woman. As a feminine woman, let's say. And so it's helpful to me to know that there are lots of people who are having hysterectomy oophorectomy for other reasons and this is actually enhancing their experience of their gender is fluid.
And then there were other people. For whom access to these surgeries hysterectomy or oophorectomy was part of their plan for their gender affirming care. Because these are people who identify as transgender and yet, access to gender affirming care until very recently has been challenging and so they actually often said, well it was really part of my plan to get a new for oophorectomy and hysterectomy, and so when I was first diagnosed with ovarian cancer, I was actually really glad that I would be having access to this surgery because it was the first step in my own gender affirming care. And the first three or four times that I heard this I was quite shocked because to hear this in Canada when in fact we've had gender affirming care for we could say five years for people assigned female at birth, it was surprising that people perceived access to these surgeries to be so complex that in the face of a diagnosis with cancer, they were still happy.
We also carried out pilot interviews in the US and we heard the same things even though access to gender affirming care is more straightforward in Canada. So this is an aspect of people access to care that it was interesting for us to find out about, and it's the case that it's really important for anyone involved in providing cancer care to be finding out about the mere possibility that their cancer patient may also be involved in seeking gender affirming care because these two systems of care, cancer care, gender affirming care need to be coordinated, right now these are this is a fundamental brick wall, a Berlin Wall if you like in the area of medicine that needs to be connected, it needs to be connected for lots of obvious reasons, including, say, the administration of hormones that's part of gender affirming care, the administration of hormones is going to be a very important part of a gynecological cancer patients treatment. How would estrogen testosterone affect the likelihood of a recurrence? Affect the probability of a time that's free of a gynecological cancer? If these folks are not talking to each other, then the assumption is going to be, well, I know your on hormones as part of your gender affirming care, but you just have to stop taking them. That's not actually possible fundamentally for anyone for whom hormones the exogenous administration of hormones is an important part of their gender affirming healthcare.
So I think that this is a very important part of our findings and finally it's crucial for anyone providing Cancer Support to understand that both, I'll say queer is a shorthand for all the minority sexualities, that both queer and trans cancer patients encountered fundamentally disorienting and unsupportive conditions in Cancer Support groups.
So a really important part of cancer margins is that after we carried out the interviews, we wrote the questions for the interview. We were in control of those interviews you could say we brought cancer margins patients back together again to tell their story the way they wanted to tell their story and to create digital stories.
So we paired gynecological and breast cancer patients with film makers to support them to create a digital story over the course of a weekend a digital story boot camp if you will. A key resource for people is available in the form of those digital stories. Because hearing somebody elses story can be a very important part of how you then feel empowered to reorganize your own care and those digital stories are available on the cancer margins website and now other places online. There's more of an understanding of the power of digital stories, as part of how patients inform themselves.
Nicole
Thank you for that Dr. Bryson, that was um.
You highlighted I think some really, really important you know gaps or opportunities that I imagine have a lot of harmful, you know effects not just to accessing care, but what that experience is like.
I mean, you talked about trust, how important that is. Uhm, you know. And if you're you're coming in right at the get, go without that, you know I can only imagine how unsafe, or you know just the challenges that that one would face through that experience, so you know.
The the question to you then is how can researchers, physicians support people be better allies and more inclusive to the LGBTIQ folks within the cancer care system and, you know talking specifically about, you know the relation to gynecological cancers.
Mary
Thanks, Nicole, I think that systems broadly need to be welcoming, need to be inclusive and need to be evidence based. And so I know from other research that I've done with respect to Canadian Physicians and LGBT communities that fundamentally in Canada, the approach of physicians is that they want to be welcoming and inclusive and that that translates into I treat everyone the same but that doesn't work because if in fact there are population differences, then being welcoming and inclusive needs to be based on being educated, being informed about the evidence specific to particular populations, where there are gynecologic health disparities.
Groups that are organized around race or Indigeneity or particular disabilities or minority, gender, or sexuality. Where there are prevalence differences and we know that there are prevalence differences in gynecological cancers for members for gender and sexual minorities, these faces need to be based on educated and informed care providers and systems.
We need then culturally competent care as well as medically competent care. Most people would agree at this point in Canada that we need to provide culturally competent care.
The the body of evidence that would allow for medically competent care is a let's just say uneven. So if you take a look at studies looking at the training of gynecological cancer, physician surgeons, oncologists support workers and so on.There's still very little in the medical school curriculum that pertains to evidence specific to gender and sexual minorities.
We need informational and institutional visibility so those cancer tracking systems, fear and the other epidemiological surveillance systems, need to include information about gender and sexuality so that we have better evidence about prevalence. So to all of the electronic patient forms and all of the record keeping needs to be inclusive of information specific to sexual and gender minority groups.
We need to coordinate cancer care and gender affirming care. We need to be very careful about oversimplification when it comes to members of gender and sexual minorities, so we really need to keep that intersectional lens and so if somebody identifies us too 2 spirit, who identifies as Indigenous, that's not the same thing as transgender, and we need to keep that complexity in order to avoid excessive simplification.
We need to stop talking about women cancers. Of course. We're all, let's just say committed to an understanding of the historical significance of women’s health all the work that feminists did in order to bring the concept of women health to the foreground to recognize all the areas cardiac health, let's say where there is an understanding that women manifest differently when it comes to heart attacks. Women health is different from men's health. However, at this point we need to add enough complexity that we can recognize that gender is not a binary. It's not about men and women, and that's really important because the women health lens, as familiar as it is, is actually serving to obscure trans and gender diversity in relation to cancer health.
And finally, LGBTQ cancer patients means respecting support networks. Respecting the need for human rights in care, and so those support groups. All of the information that's provided to cancer patients needs to be more evidence informed, respectful and inclusive.
Stephanie
Thanks so much Doctor Bryson, I think you just spoke a lot about kind of the hopes and dreams of a healthcare system that will be respectful of gender diverse folks in in our cancer care system, and there's clearly a lot of work that needs to be done as we move forward.
I'm curious to learn more, also about kind of where you see this work going in the immediate future. You know, after you've done cancer margins, what are some of the things that you hope that that the research system as well as the medical system can help to move forward in as a first step?
Mary
I mentioned medical school education, so this would be the most obvious area where. It's difficult to see the impact of change the impact of progress in the area of evidence with respect to a whole multitude of minority populations in the content that's being provided to prepare and train the Physicians of tomorrow.
So this is an area where it would be very important for us to recognize that it's particularly crucial to live up to our commitments with respect to equity and diversity in improving the content that's being provided to train future physicians.
This is a really key area and I would say that it's very important for systems to change. So it needs to be very important that those people in leadership roles who are designing those epidemiological cancer surveillance tracking systems. People who are designing care people who are creating those forms that people encounter when they go to BC cancer. That those systems are recognizing that they are fundamentally in a position of what some researchers of minority stress have called institutional betrayal. That the institutions themselves have not taken responsibility for change in these areas, and without that it's going to pile more work and more trauma at the feet of minority identified cancer patients who shouldn't be the ones having too lodge a complaint, having to make recommendations being consulted in order to provide input to BC cancer, let's say. These are folks who are already burdened by minority identification.There needs to be more leadership on the part of institutions.
Stephanie
Thank you so much Doctor Bryson, I think those are a couple really important. First, tangible steps that the system, although a challenging task to hold folks in our system accountable. And moving forward, moving the dial forward in this area some really important steps to move forward on it.
Nicole
If there are any resources if we've got any listeners who might want to educate themselves or learn more.
Do you have any resources that you would suggest they could check out?
Mary
Cancer margins has a website, so you could go to lgbtcancer.ca. One of the challenges of resource websites like cancer margins is that over time the researchers move onto another project. It's impossible to update all the links, so.
A good resource would be any project website that focuses on minority gender and sexuality and cancer and at the same time Google at this point is just so good. So, and one of the things that we found in cancer margins that surprised me. I have to say is that regardless of people's formal education level, they were actually incredibly informed about their diagnosis and brought a lot of information into treatment decision making settings.
Stephanie
OK, thank you so much Doctor Bryson. It's been a real pleasure and I'm really grateful for you spending the time to share this important work with us.
Thank you so much again for coming on today.
Outro
Thanks for joining us on the Gosh podcast. To learn more about the Gynecologic Cancer initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca.