Season 5 Episode 3: Partners in Progress: Collaborative Ovarian Cancer Research

Join us for a powerful and inspiring conversation with Dr. Marie-Lyne Alcaraz, a dedicated program manager, and Fiona Barvé, a patient partner at Cancer Research UK Cambridge Centre. Together, they share a firsthand look into how groundbreaking cancer research and personal resilience intertwine. In this episode, Fiona opens up about her journey, detailing how the Patient Partner Involvement (PPI) group became a vital support during her treatment and transformed her experience. Dr. Alcaraz provides insight into how patient perspectives are shaping the future of cancer care, highlighting the immense value of patient voices in research.

Tune in to hear how partnerships like these are paving the way for more compassionate, innovative, and effective cancer treatment. 🌟🎙

Resources:
Cancer Research UK Cambridge Centre - https://www.cruk.cam.ac.uk/
To inquire about joining the PPI group, please email marie-lyne.alcaraz@cruk.cam.ac.uk

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 – @GCI_Cluster
Instagram – @gynecancerinitiative
Facebook – facebook.com/gynecancerinitiative
TikTok – @gci_gosh

Transcript

00:00:01 Intro 

Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne-cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers.  

00:00:50 Anita 

I’m Anita, and I am located here in beautiful British Columbia, and I will be your host for today. The first thing I'd like to do is to introduce you by reading your bios. If I may do that, if everybody is okay with that.  

Fiona, we have Fiona Barvé, is a secondary school biology teacher, who was diagnosed with ovarian cancer in 2017. In 2019, she was declared all clear, but she keeps a very close watch on her own health, going in for regular tests. Since 2019, Fiona joined the public Patient and Involvement Group which allows patient involvement in research projects, helps raise awareness, and raise funds for ovarian cancer research. She's currently involved in one of the two patient co-applicants on a large grant application for a clinical trial for Parp inhibitors which Fiona has received since 2022 after her cancer reoccurrence. That's what my understanding is. Did I get that all correct, Fiona? 

00:02:06 Fiona 

Yeah, except I am now retired. Actually, I retired about a year ago, year and a half ago. 

00:02:15 Anita 

Dr. Maria Lynn Alcaraz. Did I say that correctly? She's the program manager for the ovarian cancer program at the Cancer Research UK Cambridge Center where she has played a key role in driving initiatives aimed at advancing ovarian cancer research and treatment. Thank you for that. Dr. Alcaraz obtained her PhD in organic chemistry at the University of Louis Pasteur. Prior to joining the team in Cambridge, she served as the lead chemist at Astrazeneca, Charnwood. She has a passion for education and leadership, having previously been the head of science technicians at Saint Mary's Catholic school, and supervised a PhD student during her time at Astrazeneca. Is there anything that you would like to add to that? 

00:03:16 Marie-Lyne Alcaraz 

Nice! It's at school, where I met Fiona, and we became best friends. 

00:03:22 Anita 

Oh, nice, nice. Okay, so I'm going to just dive right into the questions that we have and let you take it away. I'm going to start with Fiona. I'd like you to tell me a little bit more, tell our listeners a little bit more about yourself and your cancer journey and what helped you the most with your mental health throughout. 

00:03:46 Fiona 

Well, I think the bio said quite a lot. But I basically I had a discomfort in 2017, in September 2017, and very rapidly was diagnosed that I had a cancer. I had surgery. I had chemo. I had Avastin. And over here, we don't say clear, we say no evidence of disease at the moment. So, I was given that in 2019 and joined the PPI group that Marilyn had just literally set up. Covid hit, so we ended up having a lot of the PPI groups on zoom for about a year, ish? I think, something like that. And we eventually got round to under Marilyn's sort of instruction or explanation to meeting up, and we made a video of that which has been publicized and circulated around Cambridge and the University, and that actually has led to some of the group joining us. So that was very positive. Moved on through the PPI and because of Marilyn and the way she leads we have been looking at research projects, we've been looking at consent forms, we've been looking at how to simplify things to a point where people with a different language base can actually understand certain things like genetic testing. And all of that was going on, and then I had my CA125 rose 2 years ago. It only went from 6 to 11, but it was just enough to make me worried. I got a scan and found out that I had a recurrence and since then I again surgery again Chemo. I've been asked to go on a trial of which I'm only on the control side, the control arm. So, I'm taking the Olaparib now. Still working away on the PPI with Marilyn doing different things, speaking at different symposiums. And I think the key thing for Cancer Research UK Cambridge is the patient is the center of everything. So, as a result of that, the ovarian PPI, has been quite vocal and I think, renowned in Cambridge itself now, the actual Addenbrookes itself.  

00:06:38 Anita 

Very lucky to have been involved in such an amazing opportunity. There's many, many out there, as you know, that have nothing. 

00:06:47 Fiona 

I know, and I think the other side is, I'm very lucky. In England. It's a bit of a postcode lottery as to how you get treated. And whether people are in the research hospital or whether they are out in a local hospital. So, it's actually, unfortunately, it's not always the best scenario for a lot of people over here. 

00:07:13 Anita 

Marilynn, can you tell me a little bit about your role as a UK. At the UK. Cambridge Center? How that all plays out. 

00:07:23 Marie-Lyne Alcaraz 

Yeah, I think perhaps I should explain what is the CRUK Cambridge Center? So, the center is one of 7 CRUK centers across the UK. And the Cambridge Center is a partnership between the University of Cambridge, the Cambridge University Hospital with a research hospital at Addenbrookes, and CRUK. We bring together over 1,200 world leading scientists; this includes biologists, chemists, physicists, engineer, mathematician, computer scientist and leading clinical experts including doctors, nurses, clinical trial coordinator and allied healthcare professional across Cambridge to tackle cancer from every angle. Our research is focused on detecting cancer at early stage and developing personalized treatment for every patient. The research is divided up into teams; some tackle disease area, such as breast cancer or pancreatic or ovarian cancer, whilst others address core discipline like fundamental biology, or cancer imaging immunology. And you have about 17 research teams in total. 

And in addition, we are partnering, and the patient group is really involved in that, with the Cambridge University Hospital and the University of Cambridge on the Cambridge Cancer Research Hospital Project to build a new kind of cancer hospital for the East of England region. This will change the story of cancer by bringing together world leading clinical and research expertise under one roof to detect cancer earlier, to treat it more precisely, and save more lives.  

We are literally bringing the bench to the bedside. So, even if we are called the ovarian cancer program, we address all gynecological cancers. The program is co-led with Professor James Brenton and Dr. Maria Crispin. My main role is to ensure the delivery of the strategic objective of the program and adopt the proactive approach to cancer in the next generation and partner with the public and some. It’s, of course, this part that I'm leading our patient and public involvement, an engagement group that I started with Fiona and slowly building the group. Now that you are 40; There were 40 patients in the group from all over the UK. And I start to introduce 2 international patients. 

00:10:21 Anita 

Wow! That's very exciting. 

00:10:23 Marie-Lyne Alcaraz 

And you are more than welcome to join the group. 

00:10:30 Anita 

Yeah, it's you know. One of the things that I didn't tell you at the beginning of our conversation was that I was asked to come on board because they were hopeful that perhaps I could help spread a little bit of the word, because I have a fairly, not huge, but a fairly large following on social media. So that's where I have been trying to put out the word, because one of the things that I'm finding is sort of what you are talking about over there that people don't know much when they have received these terrible diagnoses that, you know, just leave sort of just beside themselves, they don't know where to turn. So, having opportunities like you are offering. I think it's just amazing. And that's sort of why I'm here to try and hopefully broaden the broaden the scope. Fiona, how is being part of this this group affected you in your journey?

00:11:34 Fiona 

I think one of the key things, I think, especially when you're undergoing treatment is you're with people who understand and that actually is, you don't feel alone. You don't feel so isolated. I do have a big family. They're very lovely, and I you know I get on incredibly well with the full range of my cousins and aunts and etc, etc. But I don't think people fully appreciate everything that you go through just the fear of the scan, the fear of the results that you know you actually have on a daily basis nearer the time. The other side of it, I'm actually, as you, as you know, a science teacher and I thought it would be really, really useful to keep my brain ticking over. So, on the research side, it's just really interesting what comes through the PhD students as much as the professors. So that side of it keeps my intellect ticking over. Marilyn was a big, big influencer obviously, I mean, I worked with Marilyn for 5 years, I think before I was diagnosed. And when she asked, that obviously was a call to come and do something positive as well. And I do think the group does positive work and actually helps a lot of the clinicians and actually helps the researchers see it from a different angle. I think it gives a lot of hope to a lot of women who, you know, use our information and actually access us in various ways. 

00:13:23 Anita 

How would they access you? 

 00:13:25 Fiona 

So, things like the genetic testing, it's a demo project that that was set up between Cambridge and Birmingham hospitals. So, there are, I think there's 3 or 4 different animated cartoon like storyboards which have multilingual so you can pick the language. So, one might be on what is genetic testing another one might be on why it is a good idea to have your genetic make-up being shown. 

 00:13:59 Marie-Lyne Alcaraz 

Yes, so one is, what is genetic testing? One is, what do my results mean? And the 3rd one is, what are the next steps? They are translated over more than 10 languages, as Bengali, Polish, Romanian, Urdu, Italian, and others. And this was done by the patient group from Cambridge, and patients from Birmingham. It was a collaboration with the Birmingham hospital. 

 00:14:31 Anita 

What do you find, Marilyn, are the biggest challenges that you undergo with the patient initiative. 

00:14:38 Marie-Lyne Alcaraz 

I think first It's rewarding. If I do this job, it's mainly because of the patient group. And even if it's not, it's only one part of my job. But this is the best part, is really working with such truly inspirational women and their partner and their family. And it's not only patient, the view of their partner, carer, family for me are very.. and leading this group is very rewarding and an impactful experience. And I really look forward our weekly meeting. So, we meet every week through zoom, every Tuesday at 5 PM we meet. Since Covid, it's a support group and a working group at the same time, because a lot of PPI group are only working. This group is a support group, too, I think, a big difference. And we provide them resource training, and we help them empower, driving one of their most challenging period of their life. And some patients that benefit from Research Center, in fact, manage to patient from local hospital, having their treatment modified and improve the challenge.  

I think the biggest challenge are the emotional tolls, witnessing the struggle, the loss, the pain that these patients are, and their family experience, is difficult. The other challenge is the financial cost, constraint, the resource constraints. and many patient initiative face challenged due to limited funding, staff, and resources and balancing financial reality with the needs of the patient committee often present a major hurdle. Gynecological consultation of diverse needs based on factors like cancer type, stage, socioeconomics, background, mental health and family support and managing their expectation is a lot, but maintaining the long term, patient and community engagement is challenging, and the worst is dealing with loss. It's very difficult to cope with both personally, because I know each of the patient in the group on a personal level. So, personally, before the group as a whole, it's hard every time we lose someone and this is why I thank all of them, all the contributors in our group, and all the PPI groups that often help us. But I think this is the hardest, and this year was out because we lost 3 patients in 3 months, and so it was a difficult time for the patient group. 

00:18:01 Anita 

Fiona. The group offers lots and lots of patient resources. Is there anyone in particular that you found more useful than another? Or what would you like to. 

00:18:13 Fiona 

Well, we tend to. We tend to review resources rather. We've made one very recent resource, which actually is a poster which we're using to highlight the use of the PPI. But most of our work in the past has been looking at things that have been made before simplifying them. So, I think there's 17 consent forms at one point you went in to consent for your surgery to consent for this to consent for, can they hold your tissues, etc, etc. and they have, with our help, they've actually pulled it down to two, so that that has, you know, as as you probably know, when you're in a phase of disbelief, that you're actually a cancer patient to actually be given several different versions of basically the same thing that actually is quite wearing. So that's the type of thing. But recently, we've actually done a poster, it was actually for a symposium, but actually it's a really effective poster and I think people are very jealous of our poster. On the back of that we've put that into a leaflet, and on the back of it we've actually put, I think it's, Marilyn, your suggestion, the symptoms of ovarian cancer that can actually go out to GP surgeries, or it could be put on windows of shops, or it can be put in the back of toilets, toilet doors. Because I think there's a lot of people who haven't got a clue what the symptoms of ovarian cancer actually are. 

00:20:01 Anita 

Well, I have to say I was one of those. 

00:20:05 Fiona 

Well, so, to be honest, so was I. And I actually had a cousin who died of it 10 years previously. But cancer 30 years ago wasn't talked about. So, I give myself a little bit of leeway. It's only recently, in the past 10, 15 years. I think it's become more acceptable to talk about different things. So, I'm going to use that as the reason I knew nothing. But then, you know, the whole concept of genetic testing that's been brought to the fore through the PPI group there's various little aspects that have added into the research that actually goes ahead. So, you know, can you really go for a scan every single day just to help out a research group when you're actually going through treatment? Have you got the finances to do that? Etc. It's quite Patient led some of the information that we give through. 

00:21:09 Marie-Lyne Alcaraz 

You do a lot more because you manage to implement whole genome sequencing for ovarian cancer patients. It's because of this group. 1st was a pilot study in Cambridge, and now it's under NHS nationally. And so now, every patient diagnosed with ovarian cancer have their whole genome sequencing. You provide presentation. You do media. You do podcast, news. You did the radio yesterday. There was TV, you are co-applicant of grants. I have a patient in our Scientific Advisory Board. You present at conference. You went to Los Angeles at the OKAC meeting to present there. We had another patient that presented at another symposium. And I'm organizing an international symposium in March, and there will be all leaders from all over the world coming, and they will be patient presenting. And you are doing panel review. So, I think you are not saying everything you are doing. You are doing a lot. 

00:22:31 Fiona 

But I think that this is very true. But when you talk about a resource, that I know what you're saying, and raising awareness is definitely one of them and making it more obvious to people that we need patients to be part of the group, etc. But as resources, I'm not sure if that is your question actually Anita. Do see what I mean? We do huge amounts, but physical things to hand out to patients. It's only part of the story. 

00:23:14 Anita  

There's something, I think, that that I think that's very clear with what you're saying. There are definitely more than one kind of resource that is available. And you know, part of it is the print up printed kind of resource that we're talking about. But I think more or less I was talking a little bit more about support and actually becoming a member of a group or helping other people with this. Do you find that that’s helpful? I know myself that I'm not in a position to do anything such as you are other than this kind of podcast which I'm working on. But for me, the resources that help me are me being able to do things. I love to be able to get out, and like when I go to for my chemo, which I'm having every 2 weeks now, one of the things that I want to do and I have said this before, I see these women that are well and men too, because it's a unisex where we go, obviously don't have ovarian cancer at that stage but they have cancer of sorts, I just want to reach out to them when I can tell that they're newbies and be that resource for them. I am not in a medical field. I can't help you, nor would I even want to. But can I tell you? Can I help you have some hope. Because my gosh! There's way more hope than the moment that when you were told that you had cancer. Like everybody, almost reads that as a death sentence. And it's true, you know, that may happen to some or all of us. I don't know. But there's an awful lot of hope out there. It's come a long, long way, and especially because of people like you and Mary Lynn. That's what's helped us and brought this all through with the research. 

00:25:11 Fiona 

I think the there's one member of the group who told me actually, that part of the reason that she had any hope. it's because that people were on the Zoom and they were still alive on the PPI group, and people were still there, and they'd been there for, in my case, 7 years. So, you know, it made her more hopeful especially when you see the statistics. Sometimes they can… the statistics can really bring you down. I fortunately have got a statistician as a friend, and she basically said, “Well, you know, you've got to get the right bit of data and the right age group, and the people in Stage 3 who did this, that, and the other and stage 4 who do this, that, and the other. And then look at your percentages.” 

00:26:11 Anita 

Yes, exactly. I'm glad you brought that up, because that's something that personally has bothered me over my journey, that I have been lumped in with statistics that really are not true statistics. just because, as you said, it's you know were those people in my age group? Did they have any pre-existing diseases. You know. What was their lifestyle like? What kind of help did they have? You know there, there's just so many different variables before you can really tell what your statistic is like. So, I think they should in some regards, just toss those to the wind. That does give us more hope. But it is amazing when you see somebody. Oh, she's had stage 3 ovarian cancer for 7 years. Well, maybe I can do that, and that does give you way more hope than the 4 to 6 months that you might have been given in the 1st place. 

00:27:08 Fiona 

No, I agree.  Yeah, I’m stage 4 

00:27:12 Marie-Lyne 

“B” 

00:27:13 Fiona 

All right, don’t make it any worse! I know I know. But I there is something about the personalized medicine. There's something about genetic testing. There's something about having the right surgeons having the right oncologists having the research group behind you. I think I have been incredibly lucky where I live. I can't stress that enough in the Uk. And I've been incredibly lucky with the team of you know, we're talking 100, 200 people who are just dealing with ovarian cancer and the research behind it. And it's quite empowering, really. Just have that as a resource, that's, you know, behind us. And on top of that, obviously the PPI group. I think if there hadn't been one, I think that would have been an awful void in my life, actually, especially when you're going through treatment. And you know, you just need somebody to say it's okay. It's right. It's life. Get on with it. 

00:28:31 Anita 

We only have one. 

00:28:32 Fiona 

Yeah, do. You might as well enjoy it as much as you possibly can. 

00:28:37 Anita 

Maybe, can I just ask, I guess we should be finishing up here because I have to make sure I don't take too much of your time. But, Marilynn, is there anything that you would like to tell us before we close down any particular things? And I'll ask the same question of you after Fiona. 

00:28:59 Marie-Lyne Alcaraz 

I think I really want to thank every patient who joined the group. I would say that it's a lot of people want to join the patient group. But you need to select the right people. And because you need to have people who really wants to engage and change and be part of it and stay positive, and they will influence obviously the future of the next generation of people being sick, probably not themselves. So, I know it's hard, but it's hard to find the right, and I'm so lucky, to have the right number of people in this group, and there are so much involved and so motivated to do everything and all of them with different background, different age, and different stage of cancer, or different even cancer, that they are really doing everything, and so responsive and really united and I cannot thank them enough. And I welcome more members, because unfortunately being diagnosed with ovarian cancer, unfortunately, we are losing patients. So, we need always more patient to join. And I'm looking forward, having more people from whenever and to join and want to do different. 

00:30:33 Anita 

How would they go about reaching out to join? 

00:30:37 Marie-Lyne Alcaraz 

My, you can contact me, I can put my email address it's marie-lyne.alcaraz@cruk.cam.ac.uk . 

00:31:00 Anita 

Yeah. Well, maybe we can get that on the podcast, we'll have that written out. That's amazing. Thank you very much. Everything that you are doing we do appreciate, especially somebody like myself, for sure. And Fiona. 

00:31:13 Fiona 

For me, personally, I think you should stay positive. I think it affects the way you approach life, and I think it gets you off the sofa, and I think it affects everybody around you. If you're positive they stay positive. And that actually is a happier life. So that's my detail. 

00:31:435 Anita 

I'm in total agreement with that. I'm thrilled to have met both of you today and we'll keep in touch and like to thank you for this. So, any last words, or are we all good. 

00:31:49 Marie-Lyne Alcaraz 

No, thank you for having me. Yeah, thank you for. And thank you, for it's it's so nice to meet you. 

00:32:00 Anita 

Thanks, ladies. Bye-bye. 

00:32:10 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.