With Dr. Barbara Vanderhyden, Corinne Boyer Chair in Ovarian Cancer Research at the University of Ottawa. Like many things related to sexual and reproductive health, there’s elevated stigma about gynecological cancers. Like many health issues for women, girls, and gender-diverse people, there are serious gaps in knowledge and treatment, too. The gaps are bigger for those who face discrimination based on factors like race, ability, and income.
It’s ironic that modern biological research is based on cells taken from a woman named Henreitta Lacks in 1951 at Johns Hopkins Hospital. Lacks was a Black woman diagnosed with cervical cancer. Her cells were taken without her consent and cultivated into the HeLa cell line, the most commonly used cell line in scientific research today.
Those most marginalized, dealing with the poorest treatment and outcomes and most stigmatized and understudied health issues are the ones we’ve built our medical practices on.
Since May 28, International Day of Action for Women’s Health, we’ve focused on gender and health matters we may know bits and pieces of but probably need to learn more about. As we wrap up this mini-series, we can’t help but take a long view of equality, justice, and rights in medicine. We’re thankful to the amazing medical scientists trying to turn the tide today.
Our guest Dr. Barbara Vanderhyden is one of those people. She’s the inaugural Corinne Boyer Chair in Ovarian Cancer Research at the University of Ottawa and a Senior Scientist in the Cancer Therapeutics Program at the Ottawa Hospital Research Institute. She loves talking about her research, which focuses on how risk factors affect the incidence of ovarian cancer, and how good models of ovarian cancer can shed light on cancer susceptibility, tumour progression and response to treatment. Dr. Vanderhyden teaches about science, academic integrity, and science communication.
Transcript
00:00:02 Barbara
It is a less common cancer, and it is a more deadly form of cancer compared to many others.
00:00:10 Andrea
So let’s talk about ovarian cancer.
I’m Andrea Gunraj at the Canadian Women’s Foundation.
Welcome to Alright, Now What? A podcast from the Canadian Women’s Foundation. We put an intersectional feminist lens on stories that make you wonder, “why is this still happening?” We explore systemic routes and strategies for change that will move us closer to the goal of gender justice.
The work of the Canadian Women’s Foundation and our partners takes place on traditional First Nations, Métis and Inuit territories. We are grateful for the opportunity to meet and work on this land. However, we recognize that land acknowledgements are not enough. We need to pursue truth, reconciliation, decolonization, and allyship in an ongoing effort to make right with all our relations.
00:01:01 Andrea
Cancer is not an easy subject. I find gynecological cancers like cervical, ovarian, and uterine cancer especially difficult to talk about. A number of my loved ones have gone through it themselves.
Like many things related to sexual and reproductive health, there’s elevated stigma about gynecological cancers. Like many health issues for women, girls, and gender-diverse people, there are serious gaps in knowledge and treatment, too. The gaps are bigger for those of us who face discrimination based on factors like race, ability, and income.
I find it especially ironic that modern biological research is based on cells taken from a woman named Henreitta Lacks in 1951, at Johns Hopkins Hospital. Lacks was a Black woman diagnosed with cervical cancer. Her cells were taken without her consent and cultivated into the HeLa cell line, the most commonly used cell line in scientific research today.
That’s the thing about medical history. The most marginalized, dealing with the poorest treatment and outcomes and most stigmatized and understudied health issues are the ones we’ve built our medical practices on.
Since May 28, International Day of Action for Women’s Health, we’ve focused on gender and health matters we may know bits and pieces of but probably need to learn more about. As we wrap up this mini-series, I can’t help but take a long view of equality, justice, and rights in medicine.
And I’m thankful to the amazing medical scientists trying to turn the tide today.
My guest Dr. Barbara Vanderhyden is one of those people. She’s the inaugural Corinne Boyer Chair in Ovarian Cancer Research at the University of Ottawa and she’s a Senior Scientist in the Cancer Therapeutics Program at the Ottawa Hospital Research Institute. She loves talking about her research on ovarian cancer risk factors, and how good models of ovarian cancer can shed light on susceptibility, tumour progression, and response to treatment. Dr. Vanderhyden teaches about science, academic integrity, and science communication.
00:03:10 Barbara
My passions are the thrill of discovery, that’s what made me and keeps me being a scientist. I love to inspire students to think critically about their work and to become good communicators of their work to the public. I love old movies and I love chocolate. If were to sort of pinpoint why I became a scientist in this field at the time I did, I have to lay all of the credit at the feet of Patrick Boyer.
Patrick Boyer’s wife had survived breast cancer and melanoma and then had died of ovarian cancer. This in the mid 1990s and frustrated by the lack of effective treatments for the disease, he went on a rampage of sorts, traveled across the country, tried to find where the ovarian cancer researchers were, found that there were very few at that time and he did three things that I think are worthy of note. First, he started, an organization that would support women with ovarian cancer, that is now Ovarian Cancer Canada. He funded a network of researchers across Canada who collected tissues for research, which is incredibly important to set the foundation for the opportunity to do research with patient material. And thirdly, and most importantly, he raised the funds to set up an endowed chair at the University of Ottawa that he named the Corinne Boyer Chair in Ovarian Cancer Research, and I was recruited to that chair in the year 2000.
So for 23 years I have been building on his frustration and made it into my passion, is that we needed to change the world. We needed to develop a research community that had a focus on working collaboratively and cooperatively to advance better treatments, better detection strategies, better methods of prevention.
00:04:53 Andrea
As a leader in ovarian cancer research, tell me some of the top things we need to know about how this cancer appears in diverse women and gender-diverse people.
00:05:02 Barbara
It affects people with ovaries, whether they be non-binary or transgendered men or women. It is a less common cancer, and it is a more deadly form of cancer compared to many others. So one in seventy-five people with ovaries will be personally affected by ovarian cancer. And the survival rate now – about 45% of people who develop ovarian cancer will survive five years. So, it’s not the best and so we have a lot of work to do.
All people with ovaries have some level of risk for ovarian cancer. And that risk is hugely dependent on a number of factors and their personal circumstances, but the most important or influential factors, I would say include: age, so it is a disease that occurs more frequently with increased age; a family history of that disease and particularly inherited mutations like BRCA, BRCA1 or BRCA2, which put individuals at higher risk of primarily breast and ovarian cancer.
Ethnicity then comes into play because the individuals who have those mutations are often more frequently found among Ashkenazi Jewish population, French Canadian descent, even now, an Icelandic Dutch descent has specific mutations that increase the risk for ovarian cancer. So we’re beginning to understand more of the ethnicity associated.
It’s also associated with the lifetime number of ovulations. So, in women who have no suppression of ovulation and suppression happens by taking oral contraceptives or being pregnant. So if you don’t have that, you have more lifetime number of ovulations, you have increased risk.
Keep in mind that ovarian cancer is a global term that encompasses a large range of cancers, many of which start in the ovary, but some of which also start in the tips of the fallopian tubes and even some now in endometriosis.
Those are the risk factors. And you can see that anyone with ovaries have a variety of risks and the level of risk they have is largely associated with a number of factors. Those are just the major ones, there are lesser ones as well.
00:07:10 Andrea
What are our gaps in knowledge and research? Why are they there and how can we close them?
00:07:15 Barbara
Varied experiences within the healthcare system that might be that those individuals would have different experiences within the healthcare system. And we know already, there’s lots of information about how that is true not only for Indigenous people, for Black people, the LGBTQ community as well. So that is where the bigger issues might lie right now, and the ones that maybe are modifiable.
I’m a scientist, I’m always looking at gaps, that’s what we do. We find where we don’t know information and we try to learn more. There’s limited amount we can test in a lab environment. These kinds of human issues have to be studied in humans. I do some modeling in the lab. It’s very challenging to try to develop models where we can study these actions. And again, the diversity of both humans and risk factors and genetic identity really all influence it to a degree that makes it almost impossible to predict what the outcomes will be.
Most ovarian cancers are diagnosed in later, what we call stages, it’s progressed beyond the ovaries. The symptoms tend to be associated with abdominal discomfort, bloating, there’s difficulty eating or feeling full more quickly than usual. There’s abdominal discomfort in general. There’s changes in urinary habits. Those are the four most prominent ones.
And then there’s a whole list of less common symptoms that can include anything from nausea, changes in bowel habits, fatigue, unexplained weight loss, menstrual irregularities, back pain. So the full list is actually on the ovariancanada.org website. So I encourage everyone to go through that.
And as you can see, the symptoms themselves are quite subtle. And so the rule of thumb that we have is if you have a new symptom that persists for three weeks, then you need to have it investigated. You need to go to a physician and say: ”This is unusual for me. I’ve had this now for three weeks, it’s not going away, can we figure out what it might be?” And I would actually encourage them to say, “could it be ovarian cancer?”
Because put that thought into the physicians head, all of these symptoms are gastrointestinal disorders as well, and they’re much more common than ovarian cancer.
So a physician that you present just your symptoms to might think “first of all, okay, that there there’s something going wrong in their gut as opposed to their ovaries.” I can’t tell you the number of times that a woman said, to me, “you know how I got diagnosed with ovarian cancer? It’s because I couldn’t get my pants done up.” Bloating, it becomes often the trigger when women will finally you know go to a physician, and say “okay this is ridiculous, now I’ve put on some weight and I can’t even get my clothes done up anymore, what’s going on?”
00:10:04 Andrea
What prevention and advocacy needs to happen, and how can everyday people like me do something about it?
00:10:10 Barbara
The non-surgical methods I’ve already mentioned, the use of oral contraceptives and pregnancy suppress ovulations and that actually reduces the risk. Individuals who are doing something in their lives that is suppressing their ovulations might be actually reducing their risk of ovarian cancer at the same time. Which is why I’m saying that those individuals who are transgender, who are suppressing ovarian function, might actually be doing themselves a benefit that we have yet to determine whether that’s real or not.
There are surgical methods as well, and people like Angelina Jolie who’s made it famous for carrying a mutation that is going to put her or anyone at increased risk. It is possible for people who are at high risk to go do the surgery that is called salpingo-oophorectomy. So, scientific term saying taking out the ovaries and the tips of the fallopian tips, because that will almost eliminate completely the risk of ovarian cancer. It’s the same kind of surgery as if you’re having your tubes tied or having a hysterectomy. If you remove the ovaries and the tips of the fallopian tubes at the same time, you’ll eliminate almost completely the risk of ovarian cancer.
Another strategy that actually had its home in BC and is now being largely recommended across the country – what’s called opportunistic salpingectomy. For women or anyone with ovaries who is having surgery, abdominal or pelvic surgery for any reason, then it might be worth raising the possibility of having the tips of the fallopian tubes removed at the same time if the ovaries are also being removed. Because that reduces the risk of the development of ovarian cancer. In some circumstances where gender affirming surgery is going to be used, then it’s worth bringing up the topic of having the ovaries and the tips of the fallopian tubes removed at the same time.
Advocacy? Oh, where do I begin? There are lots of opportunities. Ovarian Cancer Canada organizes advocacy lobby days on the government on a regular basis. So contacting them and asking if there’s anything you can do to help them in their mandate, I’m sure they would welcome the assistance.
Also, you know unfortunately like everything else, being your own advocate, I think is incredibly important. Know your own risk, be aware of a family history of inherited mutations that you might have, your own lifestyle. Do you have risk factors that might make you at higher risk and therefore be more attuned to the symptoms? And you have to be constantly aware of those symptoms a little more acutely than women who are not at high risk.
If you’re going to be your own advocate, do so with your physician as well. There are all kinds of horror stories, but there are also a lot of very caring people who want to do the right thing. And they can only do the right thing if they know everything they need to know. A lot of the horror stories come because the physicians weren’t fully aware of what the circumstances were that they were walking into.
Be free to share your use of alternative therapies, for example, because if you’re going to, if you are diagnosed with ovarian cancer, some of those alternative therapies actually counteract the activity of chemo. So you don’t want to be taking some of those natural health products at the same time you’re taking chemotherapy because you’re negating much of the effect of the chemotherapy.
And other aspects of your life too. What are the factors that will make you less comfortable or more comfortable? They will listen and they will try to do their best to make sure that you are as comfortable as possible for what is routinely not a comfortable exam. For anyone who has an ovary and a uterus. That will never be comfortable, but they can try to do their best to make it a little bit more comfortable for you.
00:13:53 Andrea
Alright, Now What? Check out Ovarian Cancer Canada at ovariancancer.org for more information and resources. They have peer groups and tools for anyone going through ovarian cancer right now too.
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