A conversation with Alison Ross from Ovarian Cancer Canada
(transcript has been edited for length)
Alison Ross
My name is Alison Ross, I am the Director of Knowledge Mobilization with Ovarian Cancer Canada. I am a social scientist by training, I'm not a medical doctor or nurse or clinician. And my main role is to help people who are affected by ovarian cancer to understand all the complicated clinical information that they're being given.
Golda Arthur
So that's such an interesting title, Alison. I don't think I've come across a title like that before. Say more about what knowledge mobilization is, and why it's important to the organization?
Alison Ross
That's a great question. It's really an umbrella term, and it kind of encompasses a whole bunch of different types of activities. And at a very, very high level, it's helping people who are affected by ovarian cancer, not only to advocate for themselves and understand their situation, because most people have never heard of ovarian cancer before they're actually diagnosed with it. It's helping them navigate the healthcare system as well. It's helping them know what questions might facilitate a really good conversation with their oncologist to get the information that they need for their unique cases. And then also making sure that any support or resources that we put out to the community are accessible to different types of people. So there's definitely an equity lens to the work as well. In addition, making sure that people, regardless of the way that they learn, the way that they process information, their level of education, their experiences with healthcare, or scientific information, helping all different types of people access the information that they need to make really informed decisions about their care.
Golda Arthur
Ovarian cancer is a rare cancer, and it's not as widely occurring as breast cancer, for example, but it is the most fatal of all gynecological cancers. Why is that?
Alison Ross
Yeah, great question. There are a couple of reasons for this. So I'll go through them briefly. So firstly, because it is most often diagnosed at advanced stages, one of the reasons for that is that there's no screening test for ovarian cancer. So we don't have you know, the mammogram for breast cancer, or, a pap test for cervical cancer. There's been some major longitudinal studies that are trying to identify some effective screening strategies. And just to date, there's nothing that's effective. The unfortunate reality is that the most common type of ovarian cancer, it spreads when the cells are so small, like a grain of sand, and the blood tests and the imaging technology that we have, at this point in time, they're just not sensitive enough to pick up something that's so small. There are a few other reasons for the high mortality rate as well. So for example, the most common symptoms of ovarian cancer, they're very vague, they're very common. They're nonspecific, all three of us on this call right now probably have at least one of them. That's how common they are. And they mimic less serious conditions. So there's really just no red flag symptom that's going to alert a person or their or their doctor to consider ovarian cancer. For what it's worth just while we're talking about it, the most common symptoms, bloating, urinary changes, feeling full quickly, difficulty eating, and pelvic and abdominal pain or discomfort, but not everyone is even going to have any of those symptoms. Another reason is because there's just no easy way to diagnose the disease. So forget about screening the general healthy population. Even if someone does have symptoms of ovarian cancer, and they go in to speak to their doctor about it, there are a collection of a few tests that a doctor might order but even together, these tests are not going to definitively diagnose a case of ovarian cancer and the only way to do so is with a surgical biopsy. And I will flag right here that's most safely done by a gynecologic oncologist. So the real challenge with ovarian cancer, one of the many challenges is getting people who may have ovarian cancer to a gynecologic oncologist as soon as possible. And then the last thing I would add just around why it's such a, you know, highly fatal cancer is that there's just not a lot of public awareness about it. So this podcast and other things like this are fantastic. A lot of people mistakenly think that they're protected from ovarian cancer because they've had the HPV vaccine. And because they are getting regular pap tests and that's fantastic. Keep doing that. But those are for cervical cancer, not for not for ovarian.
Golda Arthur
Would you say that ovarian cancer has been a historically overlooked cancer?
Alison Ross
Yes, ovarian cancer has been a historically overlooked, also underfunded cancer and I think that's one of the reasons why it lags behind other cancers, and we don't see the same progress. We're having a lot of internal conversations at Ovarian Cancer Canada about being gender inclusive when we talk about this disease, but also recognizing that this is a really important women's health issue. What does ovarian cancer represent? And to me and and and to my colleagues, ovarian cancer is just the lens into better understanding women's health and health inequity in general. I'm of the belief at least that any advancements that we make in ovarian cancer care, any of the successes in our advocacy work that we have, any systemic change that we can drive, it's going to help people affected by ovarian cancer, but other cancers as well and other women's health issues. So that just off the top of my head that makes me think, okay, we know that anti-fat bias is a major problem in diagnosing ovarian cancer. So many women I speak to, are told that they're too heavy and lose weight, when really they're actually just, they're just full of cancer. And, I think that if we can address anti-fat bias in healthcare, it's going to help people who have undiagnosed ovarian cancer, but lots of other undiagnosed conditions that symptoms are being attributed to their weight.
Golda Arthur
That is really kind of surprising to me, Alison. So you're saying that, just so I understand this clearly, you're saying that someone was told that they were overweight when actually what was driving that was the cancer?
Alison Ross
Oh yeah, I hear this from women all the time that they go to their doctor, you know, who reports a certain symptom. And the doctor says it's because you're overweight. And if you lose weight, it'll go away when in reality fast forward a couple of months, that was actually a symptom of their ovarian cancer. We often as well, moving a little bit away from anti-fat bias, but just kind of women's health issues in general, women will go in with extreme bloating or changes to their menstrual cycle, and they're often told, yeah, you know, menstruation is rough and menopause is tough, and, you know, grin and bear it or, you know, try this medication, when really it's a symptom of ovarian cancer for a lot of women.
Golda Arthur
I think recently, there was some news about the fact that worldwide cancer rates are actually falling, they're actually in decline, I guess as people are becoming more aware, taking care of themselves, or perhaps healthcare and science is kind of moving the needle forward there. But where does ovarian cancer particularly stand in relation to others in a Canadian context?
Alison Ross
I'm glad you bring that up. So a major study was done, and it's called the International Cancer Benchmarking Partnership, to look at how peer countries compare in cancer outcomes for different cancer sites. And Canada is one of the world's leaders for most cancers, except esophageal, and ovarian. So this publication comes out and Canadians are like, what is it about these two cancers that for some reason, we're not leading the pack? Why are we doing so well, in some, and not others? So there is a lot of work being done in Canada to try to figure out exactly why that is and what's going on.