Best Of: Fascinating research projects at the MUHC and RI-MUHC

This week on Health Matters, Tarah Schwartz revisits conversations about fascinating research projects. Dr. Amine Benmassaoud discusses the challenges of liver disease and how an innovative piece of equipment could help diagnose it at an earlier stage. Dr. May Chergui explains the incredible work being done in the pathology department every day. Dr. Terry Hébert shares how his lab creates different stem cells from blood samples. Joanne Photiades discusses the importance of advocating for your health and the impact of the DOvEE Project.

Cette semaine à Questions de santé, Tarah Schwartz reprend des conversations sur des projets de recherche fascinants. Le Dr Amine Benmassaoud discute des problèmes associés aux maladies du rein et d’un nouvel équipement novateur qui pourrait permettre de les diagnostiquer à un stade plus précoce. La Dre May Chergui présente le travail incroyable effectué tous les jours par le service de pathologie. Le Dr Terry Hébert explique comment son laboratoire crée différentes cellules souches à partir d’échantillons de sang. Et Joanne Photiades discute de l’importance de défendre ses droits en matière de santé et de l’impact du projet DOvEE.

Transcript

Tarah Schwartz  00:00
Hello, my name is Tarah Schwartz and this is a special best of edition of Health Matters on CJAD 800. On today's show, we revisit some fascinating discussions with the doctors and researchers who are working on incredibly innovative projects. Later in the show, an ovarian cancer survivor shares her story and message about why you should advocate for your own health. To begin, it is estimated that about one in 10 Canadians lives with some form of liver disease. It is a staggering number and doctors and researchers are working on diagnosing liver disease at an earlier stage in a less invasive way, Dr. Amine Benmassaoud is an Associate Investigator at the RI-MUHC; the Research Institute of the McGill University Health Center, and is a physician in the Gastroenterology Division at the MUHC. Dr. Benmassaoud, thank you so much for being here.

Dr. Amine Benmassaoud  00:52
Hi, thank you for having me.

Tarah Schwartz  00:55
So let's begin with what inspired you to pursue medicine and join the MUHC. Tell us a little bit about your history.

Dr. Amine Benmassaoud  01:04
I come from a family that really valued education. My father, he's an engineer, and he teaches at university level. And my mother has dedicated her life to breast cancer research. So I really had a chance early on to be involved in two summer internships here and also abroad in the field of medical research. So I've really always been fascinated by the human body and learning its secrets. I can say that finally, after more than 10 years of medical education and training as a gastroenterologist and a liver specialist. I'm very humbled by the fact that I can help apply what I've learned to help people and really support them in their time of need. And what better place to do that but at the MUHC, an institution that truly values world class clinical care was always at the forefront of medical research. Two things that were important to me.

Tarah Schwartz  01:56
It is indeed. So let's get down to the nitty gritty of the liver. Dr. Benmassaoud. What does the liver do in the body?

Dr. Amine Benmassaoud  02:03
Oh, wow. So you know, the liver is actually the largest solid organ. It weighs about three pounds. It is located just beneath your ribcage on the right side of your body. It truly functions as a powerhouse, the body's powerhouse and carries hundreds of essential and vital functions. Some of these include the production of bile, which is critical to the digestion and absorption of fats. But also filters the blood and removes toxins and toxic substances such as alcohol, it produces proteins central to the well-being of the body, helps resist infection, stores vitamins and minerals. It really does a lot for us. So it's important to take care of it.

Tarah Schwartz  02:45
No kidding. That is incredible. I think your description of power house is a good one. What impact is liver disease currently have on our population?

Dr. Amine Benmassaoud  02:54
It's huge. It's enormous. I'll actually say that about nearly one in four Canadians about 20 to 25%, will receive a diagnosis of liver disease. Often related to fatty liver or fat accumulation within it. We think that about 20% of them will progress to more; transform to where we start having scarring of the liver. The difficulty here is that liver disease is often asymptomatic, meaning that people often do not know that they have liver disease. And these are often picked up on blood tests and imaging tests that are done. So it's really crucial to be able to identify people that are at a higher risk of developing complications related to liver disease. And, these complicated could be very serious and include accumulation of fluid in the belly, bleeding from dilated veins in the esophagus, and developing confusion that the liver is no longer able to filter the blood.

Tarah Schwartz  03:51
We're speaking with Dr. Benmassaoud, and we're talking about liver disease. I'm actually really surprised by what percentage of the population is affected by liver disease and when you say liver disease, what are we talking about really, are there many different kinds of problems with the liver? What encompasses the words liver disease?

Dr. Amine Benmassaoud  04:09
As the liver is very central to the functioning of the body, it's also unfortunately, susceptible to injury. Often, we'll go with the most common one right now, which is really the epidemic of fatty liver disease. This is often related to excess weights; our diets and lifestyle. This is really becoming the number one cause of liver disease. But there are also other causes including harmful use of substances; including alcohol, viruses such as hepatitis B or hepatitis C, which can cause significant liver disease. And other genetic forms or metabolic causes which can also lead to progressive liver problems.

Tarah Schwartz  04:53
You had mentioned earlier that it was important to be able to identify who would be at risk, since there are no symptoms or signs, which is a problem. Who have you discovered? Is it men, women, a particular age group?

Dr. Amine Benmassaoud  05:06
All ages, all sizes, gender and sex. Unfortunately, everyone could be affected. Now, like I said, about 20 to 25% of the population. I mostly deal with the adult population, but we can see people very young to older age as well.

Tarah Schwartz  05:30
So if there are no signs and symptoms, and it can affect everybody, what can we do as a people to protect our liver; to give it the best possible chance of not getting liver disease or being one in this four people that are touched by it?

Dr. Amine Benmassaoud  05:46
It's very good question. Important- healthy lifestyle, and diet, making sure to avoid excess fats. Having a diet that's rich in fruits and vegetables, but also being active, and that's also unfortunately, consequences of our lifestyle. We are more sedentary as people and so exercising is very important. The goal is really to maintain a healthy body weight. That's the most common cause of liver disease, and avoiding harmful things, specifically thinking about alcohol consumption.

Tarah Schwartz  06:27
It's interesting, because I find a lot of things. When I do ask this question to doctors, it often comes down to the same things, doesn't it, Dr. Benmassaoud? Eating well, staying active, taking care of yourself, it can impact a huge number of things in terms of our health.

Dr. Amine Benmassaoud  06:41
And it really works. It's hard to do obviously, because we are talking about lifestyle changes. But the reward is immense.

Tarah Schwartz  06:52
We are speaking with Dr. Benmassaoud, and we are talking about liver disease. The MUHC Foundation is fundraising for a special piece of equipment. Tell us about that, and how it will help patients.

Dr. Amine Benmassaoud  07:04
So I think this is really amazing. So thanks for the support of the foundation, as you mentioned, we're trying to raise money for really innovative and cutting edge medical device. That will help us in the fight to identify people early and start preventative measures for our treatments. What this medical device would do is- as the liver becomes diseased, it starts to scar. Those scars within the liver make it to be more stiff. Similarly, as this progresses further, the spleen becomes involved and we start seeing stiffness of the liver become abnormal. This device would allow us to do that with a non-invasive approach by using a little bit of a jelly, a bit of a probe on the abdomen. It's a test that would only take about 10 minutes, and would give us a lot of information on the liver health in general.

Tarah Schwartz  08:02
And is this something that would be available to people who go visit their family doctors eventually?

Dr. Amine Benmassaoud  08:10
That's a great question. Obviously, we have to be able to prioritize and identify people. Sometimes, simple blood tests can be done to what we call risk stratify individuals. And of course if there are red flags are raised. That's when we often in direct communication with family doctors and GPs for assessing their patients for these diseases.

Tarah Schwartz  08:39
How important is it to continue to purchase these innovative new pieces of equipment for the hospital; for your department for other departments. How important is that?

Dr. Amine Benmassaoud  08:47
I think it's crucial that that's really what allows us to improve the care that we provide. That's also something that's very important here at the MUHC. This device, what it will do, is basically challenge the way we've done things for nearly 60 years. Where we are relying on invasive techniques, including some of them that require poking a hole through the neck to access a vein, and then use various instruments to measure pressures and take liver biopsies. Things that could take 30 minutes but can also have complications associated with them. To now move to a new era where we would favor this new device which would be non-invasive just require a bit of a probe on the skin surface and a bit of jelly and give us an answer within 10 minutes. It's a breakthrough.

Tarah Schwartz  09:39
We are speaking with Dr. Benmassaoud; he is a liver specialist. And as we close our interview today, I'm wondering what is your Big Dream? Dr. Benmassaoud, what do you hope to solve or come close to solving during your career?

Dr. Amine Benmassaoud  09:50
My big dream? (laughs)

Tarah Schwartz  09:54
Big question.

Dr. Amine Benmassaoud  09:57
I've been on a personal level. I've seen liver diseases when things get really difficult. Unfortunately, with my grandmother, may she rest in peace. I can see the toll this can have obviously on people, but also their loved ones. If we can prevent that from happening, prevent the disease from getting too advanced and, identifying people but also tailoring prevention treatments and reversing the disease process, so that they never have to get there. And that's what I want to do.

Tarah Schwartz  10:33
That's beautiful. And I no doubt your work and your commitment is a testament to your grandmother. And that leaves a beautiful legacy behind. So that's lovely. Dr. Amine Benmassaoud, I want to thank you so much for joining us on the show today.

Dr. Amine Benmassaoud  10:35
Well, thank you, Tarah. Thank you for having me. It was an honour.

Tarah Schwartz  10:42
Coming up hundreds of patients are diagnosed every day, thanks to this department at the MUHC. It is a critical part of our healthcare system, but it isn't often talked about. I'm Tarah Schwartz. This is a best of edition of Health Matters, sharing some of our favorite stories. Every day there are 1000s of samples from sick patients that are sent to the pathology department at the MUHC. Thanks to the hard work of this department, patients are able to receive the diagnoses that helps them to get the care and the treatment they need to get better. It really is a critical part of our health care system. Dr. May Chergui works in the Department of Pathology at the MUHC and she joins us now. Thank you so much for being here. Thank you so much for being here.

Dr. May Chergui  11:29
I'm glad you call me.

Tarah Schwartz  11:31
So Dr. Chergui, can you explain what pathology is?

Dr. May Chergui  11:37
Pathologists are doctors, like surgeon or orthopedist. But we don't see patients. We're diagnosticians. So we see bits of patients under the microscope and we analyze tissue.

Tarah Schwartz  11:55
And what interested you about this field?

Dr. May Chergui  11:59
I loved the detective work and the intellectual stimulation. All doctors are intellectually-stimulated, but the attention to detail, the minutiae. We are really detectives. When no one else knows what it is, we step in and try to do our best and tell clinicians what it is.

Tarah Schwartz  12:19
Essentially that's what a pathologist does; they get a sample of a patient, whether it's cells or blood or some type of body fluid and then you figure out what is wrong with that patient is that what it is?

Dr. May Chergui  12:31
Tell us a little bit more about that detective process. You said, that's what kind of fascinated you about the field from the get go. So what kind of detective work goes into figuring out what is wrong with a tissue sample or cells tell us about that? We don't get fluids; we only get cells and tissues; cytology and histology. Blood and everything else, urine, goes to biochemists. We only get tissue. Whatever comes out of the patient, for example, a sample of breast or colon, a skin biopsy, which is my specialty, would come to pathology, and we analyze the tissue. Let's say a patient has a rash, and we're not sure what it is. We take a skin sample, send it to the department, we process it, and then I get to look at it under the microscope to say what it is. There's our routine stains, but there's multiple markers we could do as well to help us out. There's a lot of bread and butter, if I could say. Some diagnoses that we just put under a microscope, and we know exactly what it is. But especially the fact that we're in a sub-specialized center, a very advanced center, we get more complex diseases. And so there's what I see under the microscope, but then I have to correlate with the clinical information, talk to the clinicians. It's that back and forth, that's really helpful. I can't do my work by myself; we're a team. There's also the bloodwork, the tissue examination, what the patient looks like clinically, their history, all that put together is like a puzzle, and that's what attracted me. It's a very visual field and I'm a very visual person. So it's all of that attracted.

Tarah Schwartz  14:18
So interesting. We're speaking with Dr. May Chergui, and we're talking about The little known and rarely discussed department of the MUHC, pathology. Now I want to share some numbers that I found particularly interesting. So over the span of one year, the pathology team of the McGill University Health Center examines 75,000 adult and 7000 pediatric surgical specimens as well as over 70,000 cytology specimens, more than 400 diagnoses are made each and every day. That is quite a significant number.

Dr. May Chergui  14:54
Yes, we get a lot of volume, a lot of work. But it's good. It's challenging. And whenever I get a diagnosis, and I can be helpful, it's really rewarding.

Tarah Schwartz  15:05
Are there any diagnoses that are tougher to come by? Like, what happens if you get something and you can't figure out what it is? What do you do?

Dr. May Chergui  15:12
For sure, we can open the books for things that are more difficult. Like I said, going back and forth with the clinician is often very helpful. And also we're a team, we're about 20-25, pathologists at MUHC. I have some senior colleagues. So we get consensus, I show my case to people around me to try to get a consensus going for the more challenging cases.

Tarah Schwartz  15:41
Now, I was reading also that there's some type of tubing within the walls of the hospital that make delivering these transactions. I guess we could call them easier. A bit about that.

Dr. May Chergui  15:54
And I've heard about it as well. I don't know if it applies to pathology. I think it's mostly for blood and urine and stuff like that for rapid shipping of the specimens to the labs.

Tarah Schwartz  16:11
So there are tubes within the wall?

Dr. May Chergui  16:14
It's almost like... it's kind of a funny analogy to do. But like, your Hoover?

Tarah Schwartz  16:19
Your vacuum cleaner?

Dr. May Chergui  16:22
Yes, the tubes in the wall, it kind of takes the specimen in the container, of course, neatly packed. And it goes in the wall, it goes to the lab. But I don't I don't think we get our specimens that way in pathology, but I think maybe for the blood bank and stuff like that it's more used.

Tarah Schwartz  16:40
So what does it feel like to discover and diagnose a patient sample? Does it ever gets sort of run of the mill? Or is it an exciting moment, every single time you figure something out?

Dr. May Chergui  16:52
For sure, there's more routine cases, like age spots, and little beauty marks. Those we get, cosmetic stuff. Those are easier, but it's good to have easier cases once in a while to relax our brain. But when we get the more complex cases, and we actually get to an answer. Even if like sometimes we don't have a specific diagnosis. But when I talk to the clinician, and some I saw more of this type of inflammatory cell instead of that one. That was really useful for my dermatology colleagues. She said- well, I could try to use a treatment that targets that type of cell more instead of the other. And then she called me back a few weeks later -by the way, that patient, she responded super well, even if we didn't have a specific diagnosis. So I was really happy.

Tarah Schwartz  17:41
That is wonderful. We are speaking with Dr. May Chergui. She's a pathologist at the MUHC; it's not a department we really know about. We don't often hear about it. I think it's a really important department because you play such a key role in all this diagnosis and helping physicians do their work and helping patients get better. What would you want our listeners to know about the work that you do and that your colleagues are doing?

Dr. May Chergui  18:08
That we're always there. We're team players. We work really hard and because we're not very much seen people think it's almost like magic. You put tissue into a machine and there's an answer that comes out. But it's really more complex. There's a lot of steps that go into it. And like I said earlier, we're part of a team. We communicate a lot with the clinicians. I even reach out to my clinical colleagues, don't hesitate to contact us even though you don't see us we're there and we’re not anti-social, we like talking to our colleagues. So reach out whenever you want.

Tarah Schwartz  18:47
You said that your expertise is in skin so what kinds of things would you be diagnosing? Some of the more difficult or the more challenging ones?

Dr. May Chergui  18:57
I see a lot of melanoma and so skin cancer due to sun I see a lot of that. So those are very challenging. But then any rash that a patient gets also. I see that so like psoriasis or eczema, stuff like that I see a lot of as well.

Tarah Schwartz  19:17
We've heard from doctors that we've spoken to on the show before that melanoma cases are on the rise significantly across Canada. Do you find that you are seeing more and more of those of those cases?

Dr. May Chergui  19:29
I'm seeing a lot of them and even in younger patients. I don't know if we're biased because we get the most advanced cases as well at McGill. It is somewhat frightening. It reminds me and I tell my husband all the time, put your sunscreen on. I'm a bit like a military at home now.

Tarah Schwartz  19:49
I think since I've started doing this show and I've been learning more about these things, I feel like I'm that way now too. Like wear a hat, put sunscreen on, buy a rash guard!

Dr. May Chergui  19:58
Yeah, definitely.

Tarah Schwartz  19:59
It's good to have you corroborating that kind of information for us. Dr. May Chergui, it's been absolutely a pleasure to talk with you and to learn something brand new at the MUHC, so thank you so much for your time today.

Dr. May Chergui  20:13
Thank you.

Tarah Schwartz  20:13
Next up on Health Matters, how a simple blood sample can be used in so many innovative and fascinating ways. I'm Tarah Schwartz. This is a best of edition of Health Matters on CJAD 800. There is so much incredibly innovative research going on at the MUHC and the Research Institute of the MUHC. One of the projects we've talked about on the show a few times is the Heart in a Dish project. It's a study that is growing heart said cells in a petri dish so that researchers can study the patient's heart and test certain medical treatments outside of the body. This project would not be possible without the lab of my next guest, Dr. Terry Hebert's lab creates the stem cells from a patient's blood sample. Dr. Hebert is the director of the McGill Regenerative Medicine Network. And he joins us now. Hello, Dr. Hebert.

Dr. Terry Hebert  21:03
Hello, it's fantastic to be here, Tarah.

Tarah Schwartz  21:06
We're happy to have you here. We love this project. I love this project so much. How did you get involved in the Heart in a Dish project?

Dr. Terry Hebert  21:12
Well, it was kind of by accident. My lab works on heart disease and mainly we had been using animal models. We made a conscious decision a few years ago to switch over to do it in human cells. To start with stem cells, and make muscle cells or other cells in the heart. And by accident, because of that interest, I ran into Dr. Giannetti. She didn't really know that we were working on this and she said, I have patients who would like to have stem cells made and made into muscle cells to study, dilated cardiomyopathy, which they suffer from and the rest is history, as they say.

Tarah Schwartz  21:58
The rest is history. So you've mentioned stem cells a couple of times and your lab takes stem cells made from patients and uses them to generate other cells to study this disease. But tell us about like help us break down for the average person, what stem cells are and how they work? Because it's sort of a buzzword, we thrown around a lot. But really, what are stem cells? And how do they work?

Dr. Terry Hebert  22:19
The most famous stem cell, of course, would be the egg, right? When fertilized by a sperm, that one cell becomes every other cell in your body. That's a lot of different types of cells, right? But we can't get eggs to make stem cells. So what happened a few years ago, well, almost 10 years ago now was we started to be able to make stem cells from adult cells. From cells that adopted their working lives, for example, like skin cells or blood cells. And this got a Nobel Prize for Shinya Yamanaka because he figured out how to turn cells that were totally differentiated back into a stem cell from an adult. So there's no ethical issue. It's technically not so difficult now. And so we can make those stem cells from a blood sample from a patient. And then from the stem cells that we make from those blood cells, we could turn that into any other cell type in the body.

Tarah Schwartz  23:24
When did research on stem cells begin? Was that when you had mentioned in terms of receiving a Nobel Prize for it, was it only 10 years ago?

Dr. Terry Hebert  23:33
There's a long history of people working on stem cells. McGill has its role to play in that one of the first stem cells identified was identified by some research team at McGill, CP Leblond, for example. The problem for people doing stem cell research was the main source of stem cells was embryos. So ethical considerations aside, it's just difficult to get those stem cells. It's difficult to try different things and fail repeatedly, if the experiments don't work. But since 2007 or so, we've learned to turn adult cells that you can get from blood or from skin back into effectively stem cells that turns back that developmental clock in in a way that is reproducible. It's simple to obtain another sample of blood if you want, and we can make those cells back into stem cell lines, which we can then preserve in perpetuity. And the really cool thing is you can do that from one person, 100 people, or 1000 people and you can build a bank. And that's what the Heart in a Dish project is. It's a bank of these stem cells that we can then use to model disease.

Tarah Schwartz  24:55
We're speaking with Dr. Terry Hebert and we're talking about stem cells, how to create them, how special they are. So Dr. Hebert, once you've created these stem cells, what can you do with them? Is it sort of an infinite possibility of everything that can be done with them? Are researchers sort of dying to get their hands on them because they want to learn more and try different things? Tell us a little bit about that.

Dr. Terry Hebert  25:15
You've hit the nail on the head. When we used to isolate muscle cells from animals last maybe two or three days in culture at most. So the number of experiments or the type of experiments we could do was very limiting. But when we make muscle cells from human-induced pluripotent stem cells. They'll last in culture for months, that is an amazing feature of cells made that way. We can do repeated experiments in them. We can do many different types of experiments that take more time. We can use all of the modern tools of molecular biology to understand the biology of those cells; to understand how muscle normally works, or to understand how muscle is altered during the progression of the disease. Being able to make the cells from patient-derived stem cells has given us is the time and the resources to basically turn all of the tools of molecular biology loose on a problem that we haven't been able to solve yet, which is how do hearts fail and what can we do to prevent it or reverse it?

Tarah Schwartz  26:28
What is it like for you to be working in a field that is evolving so rapidly? And it's so fascinating?

Dr. Terry Hebert  26:38
I've always been interested in, in these things. I'm not a medical doctor. And you always wonder, sometimes as a scientist does what I'm doing have any value to anyone other than me? Am I just satisfying my own curiosity? Or am I helping people? I think that this particular project has given me a place to engage what little skills I have, but in the service of patients who are suffering from a fairly important cardiovascular disease. It's given me the opportunity, for the first time in a long career, to really think about giving something back to these patients and helping to understand- person by person- how the disease manifests in them, and how to think about how to treat that disease in them to personalize medicine, and to make it more precise. To be involved in that it's kind of been a life changing event for me, because now I really think that there's a place where I can help.

Tarah Schwartz  27:44
I'm feeling really moved by your answer. I'm sort of surprised by it and really touched by it. Because I certainly can't imagine a scientist who does the work you do not feeling that what you're doing is so valued. I know that one of the patients who is part of the Heart in the Dish program came in to sort of meet her own heart cells beating in a petri dish. Were you there for that? And what was that like for you?

Dr. Terry Hebert  28:06
That was really cool to watch. Because for all of us who do these things, when we take a stem cell and turn it into a muscle cell, it starts to beat.

Tarah Schwartz  28:17
Yes, so cool.

Dr. Terry Hebert  28:17
Every time I see, every student who does it in my lab, it kind of brings a tear to my eye. To see a lady with the disease do it and to see her excitement to see her engagement with that. That was a really moving event. For me and my students who were who were there at the time. It was incredible to watch. And I think it's really changed the direction of how I look at my work and how I look at how it's valued. And how I want to make people understand that it is really in the service of patients like that. You feel that. I've never had that connection to a patient before because I'm not a doctor as I said. But having her watch her cells beat in a dish was really a very moving event.

Tarah Schwartz  29:08
I'm sure yeah, just it was a beautiful story. We had some wonderful media coverage that was able to help people see what it's like. So that's wonderful. So Dr. Terry Hebert, we were talking about stem cells, how to create them, how special they are. So what now then? You've seen the impact of the Heart in the Dish program with the work that you do. What do you think is going to happen in the next couple of years? What are you eyeing?

Dr. Terry Hebert  29:32
So now that we have a fairly large number of patients who we have stem cells from those patients. Just to say, it's not just my lab that makes the stem cells. My colleague at the Glen, Dr. Renzo Cecere, his lab is there too. They do most of the conversion to stem cells, and we do a lot of the conversion to muscle cells. I feel like my entire career, I've been building assays and building tools and experimental processes to understand muscle function and how it changes. And now that work is going to finally find a place where it can all be applied in a way that actually will benefit patients. So we can try to understand how the disease affects those individual patients. How the drugs that are normally given to such patients are working in those patients. How changing combinations of drugs might actually be better for those patients. And finally, can we actually use those systems to discover new drugs? To identify new ways to treat these patients by seeing them as individuals rather than one size fits all clinical solutions that any cardiologists will tell you aren't working for many of these patients. So can we kind of find new medicines? Can we find new ways to ideally eventually replace the lost tissue in these diseases? I think that's where we want to go.

Tarah Schwartz  31:09
Yeah, so much possibility. Dr. Terry Hebert is the director of the McGill Regenerative Medicine Network. I want to thank you for your time today. It was absolutely wonderful to talk to you.

Dr. Terry Hebert  31:17
Thank you very much.

Tarah Schwartz  31:19
Coming up, an ovarian cancer survivor and thriver shares why you should advocate for your health. I'm Tarah Schwartz, you're listening to Health Matters. Joanne Photiades had no family history of cancer or even risk factors when she started to notice unusual symptoms. She knew something was wrong and advocated for her health until she was finally diagnosed with ovarian cancer. She says that she is not only a cancer survivor, but a cancer thriver. She is also the co-chair of the DOvEE campaign, which we've talked about many times on this show. And it's a project I'm also so passionate about. Joanne, I want to thank you so much for taking the time to talk to us today.

Joanne Photiades  31:58
Thank you for having me, Tarah.

Tarah Schwartz  32:00
Let's go back a little bit. You started to experience symptoms and needed to be persistent to get a diagnosis. Tell us about that.

Joanne Photiades  32:09
The symptoms started, we were trying to get pregnant actually. So I was really in tune with my body. And the symptoms were really mild at first, like heavier periods, and getting full quickly when I would eat, getting bloated, having to pee more often. But they're all symptoms that are mild, and you can easily dismiss. But since we're trying to get pregnant, like I said, I had some tests done. So I had some blood tests, but standard blood tests were not looking for any tumor markers. So they all came back clean. And then I went to do an ultrasound. And that's when they discovered that there was a mass growing on my left ovary at the time.

Tarah Schwartz  32:53
Dr. Lucy Gilbert is an ovarian cancer specialist. She created the DOvEEgene trial, which we're going to talk about a little bit more in a moment. But when did you decide to consult Dr. Gilbert as a second opinion?

Joanne Photiades  33:06
When I knew the mass drawing was 10 by 12 cms. They had told me it was a cyst and not to worry. But I did worry and I did ask for an MRI. At that time, I was told that I wasn't considered high risk and not to waste hospital resources. So I actually went to do it privately. I sent the results to my family doctor and my family doctor said I really don't like this. Go see my friend, Dr. Gilbert tomorrow morning.

Tarah Schwartz  33:37
And what was that like when you were diagnosed? What was that moment like?

Joanne Photiades  33:41
I honestly can't remember what was said. But I could remember how I felt. Obviously it was really scared I even hear the word cancer. I just know there was a lot of people going back and forth trying to get me on to the standby list for surgery; to have surgery as soon as possible. But I remember Dr. Gilbert making me feel safe. And I remember there was also a nurse with her there. I remember her name was Nurse Enza, and I will forever be grateful for them. They just reassured me. And like I said, it wasn't what they said; it was how they made me feel, and that we were going to get through this together that we were a team.

Tarah Schwartz  34:23
They're a pretty extraordinary group of women. We are speaking with Joanne Photiades. We're talking about ovarian cancer and the DOvEE Project. Joanne, you are very active in fundraising for the DOvEE Project. And for context, this is a test in its final clinical trial before going to Health Canada for approval. And it detects ovarian and endometrial cancers before it's too late. These cancers are called the silent killers, because by the time you're diagnosed, it's often too late. And this test for the women out there, it's very similar to your annual Pap test, it just goes a little higher. So Joanne, you are also the co-chair of the DOvEE campaign. Why was it important for you to give back in this way?

Joanne Photiades  35:03
Well, it's interesting that you mentioned the Pap test actually. Back in the day, now we think of Pap tests as standard care and that's really the goal of the DOvEE trial. To make this standard care because before the Pap test existed, cervical cancer was, if I'm not mistaken, the second leading cause a women's death. And now it's pushed down to 16. So we see what innovation can do... innovation and science. And what's really amazing is this is happening right here in our backyard and Montreal at the MUHC. It's going to change the outcome of ovarian cancer and endometrial cancers for all women around the world. So it's so exciting and the fact that it's my doctor that is working on this? It's just such an incredible opportunity to pay it forward. I'm just so grateful for it.

Tarah Schwartz  35:57
Yeah, it really is. And she is an absolutely astounding woman. And you're right that it's happening in our backyard is really miraculous. She's going to change women's health globally and she's doing it here. And like you mentioned, it's your doctor. So it's clear why you're so passionate about the DOvEE Project, what does it mean to you, as a cancer survivor and thriver to know that this test is getting closer? We're still in the final clinical trial so we need women to participate. But what does it mean that it's getting closer to being available to all women? It's such an extraordinary thing to imagine.

Joanne Photiades  35:58
Honestly, there is no word to describe it. It makes me so happy knowing that; if I wasn't listening to my body, at that time, I probably would have found it too late. I would have found it but even if it was a couple of months later, a couple months makes a big difference. Because it does tend to grow quickly. Mine grew from 10 by 12 centimeters to 18 by 20, in less than a month.

Tarah Schwartz  36:55
Wow.

Joanne Photiades  36:56
So that gives an indication of how fast they can go. Not always, it's not always as aggressive. But it does grow quickly and you don't usually notice it. So the outcome of ovarian cancer if you're diagnosed in phase three or four, the five-year prognosis is 10 to 30%. But if you catch it in phase one or two, it's 80 to 90%. So a huge difference. So we really need to get this test to market as soon as possible.

Tarah Schwartz  37:22
I want to come back to something that you said because it really jumped out at me. I think it's an important thing to reiterate, listen to your body. Because as women, we don't listen to our bodies as much as we should. So I think that message coming from you is a good one. Listen to your body and act. If you feel something's wrong.

Joanne Photiades  37:42
Yes, it's always better to hear, don't worry, it's nothing. Then, oh my goodness, you should have come in earlier.

Tarah Schwartz  37:49
I was just I feel like we you and I could talk for much longer than this. But obviously we're restricted by time here. But I want to close by saying that I share your passion for this project so much. I have taken part in the DOvEE clinical trial, you just have to be between 45 and 75. And you can not only find out if you have these cancers or precursors for these cancers, you quite literally become a part of history in helping to get this test to women everywhere. So if you are a woman listening who wants to take part, here's the number you can call to take part in the DOvEEgene test. It's 1-866-716-3267. That's 1-866-716-3267. Joanne you have helped raise a significant amount of money for this DOvEE project. It takes money to advance science and to be innovative. Like you said, what message would you have for our listeners about getting involved in this project in any way they can. Whether it's to take the test or to give to the test? What would you say?

Joanne Photiades  38:44
Thank you so much from the bottom of my heart because like we said it's going to change the outcome of ovarian and endometrial cancers for women around the world. And it really is my big dream that no woman's potential or life be lost. So thank you so much. No amount is ever too small because it always adds up to get that big amount that we do need to move it forward. So thank you so much.

Tarah Schwartz  39:08
It does indeed. Thank you Joanne for joining us on Health Matters for all that you are and all that you do. Joanne Photiades is a cancer thriver and a spokesperson for the DOvEE Project. Thank you for being here Joanne, I always really enjoy speaking with you.

Joanne Photiades  39:26
Thank you so much, Tarah. 

Tarah Schwartz  39:29
I'm Tarah Schwartz. Thank you for tuning in. What would you like to hear about on the show? Write to me at health matters at MUHCFoundation.com and follow the MUHC Foundation on social media or sign up for our newsletter. It's all at MUHCFoundation.com. I hope you'll join me again next Sunday. Thanks so much for listening to Health Matters and stay healthy.