Season 5 Episode 5: Beyond the Diagnosis: A Legacy of Impact

In this episode of the GOSH Podcast, we kick off our rare cancer series with the inspiring Nancy McKinstry. In 2005, Nancy was diagnosed with clear cell ovarian cancer. Since then, she has embraced her “second life” by championing ovarian cancer research, helping secure $100 million in funding and creating initiatives like the Nancy McKinstry Trainee Excellence Award. Despite a recent recurrence, Nancy continues to make a lasting impact, growing an ovarian cancer research endowment now exceeding $934,000. Her story is one of resilience, generosity, and unwavering commitment to the future of women’s health. Join us as we discuss her journey, the lessons she’s learned, and the legacy she’s building for generations to come. 

Resources:

Donate to the Nancy McKinstry Endowment Fund for Ovarian Cancer at https://donate.bccancerfoundation.com/site/TR?px=2927503&fr_id=4394&pg=personal&s_src=LNY20 

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—The Gynecologic Oncology Sharing Hub. We share real, evidence-based discussions on gynecologic cancers, featuring stories from patients, survivors, researchers, and clinicians. 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 BC-wide effort to advance research and care for gynecologic cancers.

00:00:38 Sabine

Hello everyone. My name is Sabine and I'll be your host for this episode of the GOSH Podcast. Today, we're kicking off our rare cancer series with an incredible guest Nancy McKinstry. Nancy is a former Vancouver investment advisor and vice president at Odlum-Brown. In 2005, Nancy was diagnosed with clear cell ovarian cancer and underwent successful treatment. Since then, she has embraced her “second life” by pursuing passions like rowing, building her dream home, and supporting community charities and causes close to her heart. One of Nancy's most remarkable contributions has been her work with OVCARE and the GCI. She has played a key role in shaping strategic plans for gynecologic cancers research, helping secure $100 million in funding in just five years. She's also established initiatives like the Nancy McKinstry Training Excellence Award to support emerging researchers in ovarian cancer. Despite facing a recent recurrence of her cancer, Nancy's determination and gratitude have only grown. She continues to make a difference through an ovarian cancer research endowment fund that has now surpassed $934,000. I'm thrilled for you to hear Nancy’s inspiring story and insights in this episode. Let's get started.

00:02:00 Sabine

So we'll get started. Can you please share your diagnosis and recurrence journey with me?

00:02:08 Nancy

I was first diagnosed with ovarian clear cell cancer in 2005. I retired from my career at age 55 in 2004, and in 2005, I came down with ovarian cancer. So, when that happened, it was shocking because it's not..there's no other ovarian cancer in my family or breast cancer. You know, so there was.. all the obvious things were not there. So, you know, how and why nobody knows. The first thing that Greg and I did was look around North America to see where the best cancer treatment available was. And you know, we narrowed it down to about 3, and one of them was Vancouver, and we both agreed that the best thing to do would be to take advantage of having it in our backyard. And with the support of family and friends we went ahead there. And I can only say I'm so pleased that we made that decision. At that point, Diane Miller and David Huntsman were sort of the key people in that group. And Diane actually diagnosed my cancer. So, I feel like I've always been in good hands. It was about an 18-month schedule where I had the surgery where I went through both the chemo and radiation treatments and then had a good year, was sort of six months and a good year of just sort of recovering. And I was retired so it allowed me to, you know, travel and do the things that I love to do without any real concern. And you know, the first sort of five years after you're a little nervous, And of course they're watching you very closely at that stage to see if there is a reoccurrence, you know, 10 years goes by and I'm fine, 15 years goes by, no problems. So you sort of, you get that attitude where “OK, I'm home free here”. This is not coming back. And then in 2021 they diagnosed, you know, I had some obvious. Things that weren't working properly. Now I have some other health issues with my kidney. So, in one of the investigations around my kidney, we sort of came across the tumor and immediately, of course, everybody took action. And you know to have a reoccurrence of ovarian clear cell is never a good sign. So, you know, it's been a difficult  few years. I've been able to live quite fully during that time. And you know, Still I'm optimistic that I'll be able to prolong my life as you know, as long as I feel well enough to carry on. And I guess what you know, it forces one to a lot of reflection. And I think that that's always a good thing. I feel with OVCARE that I've been in such good hands all the way along. And I've maintained a relationship with OVCARE as a donor, for one thing. And, you know, I've had the occasion to have Diane or David or you know the other physicians come and speak to different groups of women. So, we've always been, you know, lot of back and forth over the over the years so.

00:06:32 Sabine

Yeah. I mean, I'm glad you're in good hands.

00:06:36 Nancy

Yeah, absolutely. Absolutely. Amazing people.

00:06:38 Sabine

And how did you come to work with them and with OVCARE in general?

00:06:45 Nancy

In 20... I have to think... I believe it was It's almost five years ago, so it had to be about 2020. Gavin Stewart and Diane Miller asked me for a meeting. And said, you know, we're doing great things, but we think we can really lever what we're doing and do better. We need somebody from outside this bubble that we live in to kind of have a look at how we're going about it and how we could perhaps incorporate some efficiencies, improve our donor base, and would you be willing to help us out here? So, this was Right down my alley, and I say absolutely. So, 18 months We spent on the GCI, gynecological cancer initiative. And you know the goal, the first goal and sort of the mission statement of that initiative was to reduce the death and suffering for ovarian cancer patients by 50% by 2035. And that seemed like, you know, I'm used to working on much shorter timelines. And sort of attached to that wasn't we need to raise $100 million. And so that number didn't scare me, it scared them but it didn't scare me particularly, and I said there's no way that you need to look out as far as 2035 to raise $100 million. I said let's give ourselves a time frame of five years. And I'm sure you probably know the outcome of that, they raised more than 100 million. But in that process We had to establish some governance around how this would work because of all the institutions that were involved. So not only Is it VGH and BC cancer, But it's BC Women's Hospital, UBC, you know, across the board I've got a list of them all here, but I don't think that's entirely relevant. So, somebody had to get the governance structure in place as well. And so, the first thing that I did was I went to each of the institutions That were participating in this and interviewed the key people. That were working on or with patients with ovarian cancer. And that process of going to each of the institutions doing that, I talked to patients That, you know, were willing, patients that the team knew and had conversations with them about what their expectations were. And you know, from a strategic point of view, we sort of divided it up into Prevention, detection, treatment, and survivorship. So, a lot of the initial work was just done, actually setting the template on how we would look at this problem. And We went back on all of the funding and the money that had been raised over the previous five years to establish where, in fact, money was coming from. Was it coming from pharmaceuticals? Was it coming from the government? Was it coming from individual donors? I think we had five categories. And so fortunately, they had some resources that they could lend me to do all of that legwork and so we saw where the money was coming from and it also identified opportunities, which was terrific. And then we could target any marketing that we were going to do around fundraising to those specific Areas and use everybody's influence in whatever area that they had their expertise. And so that's what we did. And establish that basic framework so...

00:11:52 Sabine

That’s amazing. And I guess you talking about how you knew that it would take less time speaks on how your experience and your previous work actually helped. I was wondering how do you think your background and finance and business as a leader Contributed to the development of GCI.

00:12:09 Nancy

Just you know, all of my work experience and my history with finance and dealing with clients which for patients and in the case of this. It was Just a no brainer for me to accept this challenge and dig in. And, so you know, in the heat of it, I was probably working 30 hours a week The project. And you know, there was, there was a lot of background together so that we could make the right decisions going forward. So, no question, from my perspective it was just I love doing it. I had a wonderful relationship with all of the players and it was very personally rewarding.

00:13:05 Sabine

Yes. And obviously the outcome was amazing.

00:13:09 Nancy

From a strategic planning point of view, it was pretty easy exercise because nobody had the answers when I went around and asked about, you know, how they look at the disease and how can we put this into bite sized pieces So that Both the clinicians and the researchers could identify just, you know, what are we working on here? What are the objectives and what are the expected outcomes? You know, as a good strategic planner You not only want to have the plan of action but you want to have measurable outcomes, so it was pretty easy exercise for me and I had to just, you know, keep them in the tent so that we were all. Working towards it and they had a lot to teach me about the disease and how we needed to look at it and what not. We were both benefiting from the process, I think.

00:14:18 Sabine

Yeah. And I think this contribution kind of shows the significance of patient partners in general and how you know, it really bridges the gap between like our research and what we're doing and who we're, yeah, who we're working with, who we're helping. And how has your involvement and advocacy in research change your perspective on life and influence your day-to-day activities?

00:14:41 Nancy

Well, it's not so much... I mean having a project like this just fed my soul. So, you know, I was helping somebody and getting the joy of seeing success. So from that point of view, it's been very, very rewarding. How did it change? You know, it's the disease that changes your perspective On life. It's not this. The disease changes you immensely. And you know having the reoccurrence, even more so because you know 20 years ago Life was easy. You know, I retired early, My husband was well, You know, we had the resources to do I really wanted to do and travel and we had a cottage and, you know, we had a lovely life and, you know, since then my husband's had a stroke, so he's living in a facility, and of course, Now I have this recurrent cancer. So, you know, life is turned upside down. And so, the disease has changed my perspective a great deal. Not necessarily this project.

00:16:14 Sabine

No, that's understandable. And I think still with everything that's going on, it's so impressive that you still contribute as much as you can, not just to work, but also like in terms of funding, you've set up several funds for trainees and researchers in ovarian cancer, including the Nancy Mckinstry Trainee Excellence Award And the Nancy Mckinstry endowment fund for ovarian Cancer Research. And I think it's now surpassed nine $934,000.

00:16:42 Nancy

Yes. And you know, this has been 18 months, we've raised almost $1,000,000. And it's it hasn't just been me. I've got Incredible group of friends and former colleagues and whatnot. And in fact, you know, when I was diagnosed, 2 of my pals came to me and said you need to do this. And I'm like, I don't have time. I'm trying to manage my life, and you know they talked me into it and right from the get-go, people just fell in line. I mean, it was an overwhelming response, and I think in the first six months we raised just $400,000 and then a couple of other pals came to me and said, you know, we need to do an event. And so, we all through our contact lists into a pot and we had an incredible turn out and we raised another $500,000 at that event.

00:17:56 Sabine

That's amazing.

00:17:57 Nancy

It is amazing. So, Needless to say, we're all thrilled. And it's not sort of ending there, you know, I'm still doing some work behind the scenes to raise some more money for that. And pretty much everybody I think that's donated has brought in other people to support it. So, I couldn't be happier. You know, $1,000,000 of research money Doesn't come every day, certainly not through individuals and what not. So, you know it affords OVCARE the opportunities to lever that money too. So, if we've $1,000,000 that could be 3 or 4 times More with using that to access other funds. So, you know, it's a pretty wonderful thing to have the opportunity to do it. I'm thrilled. Thrilled. That, again, feeds my heart. I can't believe the generosity of the people around me, so it's a remarkable experience.

00:19:28 Sabine

Yeah. And with your support of researchers already through the endowment prizes and your involvement as a co-founder of the Minerva Foundation, why is it valuable to you to support trainees and researchers?

00:19:43 Nancy

Well, let's just talk about what motivated me and another and a group of people. I was one of five that established the Minerva Foundation. And we were all senior businesswomen in the community and we fought the battles and all had success and we just thought. You know, we're a pretty powerful group here. How can we make this happen for other women? And I'm one of four girls in my family, so I'm the oldest and I have three sisters, so I've been brought up in a house of women. And always were supportive within my firm to.. when I was hired. I was the only woman in a senior position. And then today, Over the last five years, they just reappointed somebody new, but we had a president who was a woman. 50% of the board members were women. And in the top 10 People 70% of them were women. So, you know, this goes back a long, long way. I'm still very involved with Minerva and this was just another opportunity. It’s Always bothered me that the money spent on research, regardless of the disease or the rate whatever is happening in research was targeted largely to men, even if it was a disease that affected both men and women. So that has always bothered me and I Thought ok so Here's an opportunity to actually help make that shift happen so that a disease like ovarian cancer gets the same attention that prostate cancer does. You know that's a dream, but Certainly whether It was just never diagnosed, but every time I turn around, I'm hearing of another incidence of ovarian cancer in in my network of friends or colleagues. And, we just have to do something. I'm a victim in this case, so I'm not going to go lying down. 

00:22:45 Sabine

No, absolutely. And are there any other unique collaborations other than OVCARE and GCI or any of the ones we've already talked about that you're particularly proud of?

00:22:56 Nancy

Well, Minerva, of course, would be one thing that.. they've been going since for over 20, we just said our 25th anniversary. And they have affected the lives of 8000 Women in our Province and because we drew participants from all over the province and paid for them to come to Vancouver and participate in our leadership initiatives and we placed particular emphasis on the indigenous women's population in BC. And so, it's 8000 individual women and that doesn't include their children and their families. So, the trickle down has been incredible. And most of these women for us to identify them to participate were leaders in their individual communities. And this I think was a huge motivator to have to give them a larger voice and to not just make a difference for themselves, but to make a difference their communities. So, it's had tremendous impact. and you know I believe the same about the the OVCARE and the endowment project. If I can sort of help bring attention to the problem, you know, my job is to have done.

00:24:46 Sabine

Yeah. I mean, the first step is bringing attention. It’s actually quite a big step. It's quite shocking, actually, how much attention needs to be brought, how many questions are Still unanswered so.

00:24:58 Nancy

Well, that's exactly it. And it’s so vast. I mean, I know absolutely nothing about science and research. What I do know is Finance and marketing. So, we all play to our strengths.

00:25:14 Sabine

Yeah, it's transferable skills.

00:25:17 Nancy

That's absolutely right.

00:25:20 Sabine

Yeah. And what has been your biggest lesson, I guess through your journey, that you think others should know?

00:25:29 Nancy

Well, there's no mountain too big. You know, and you can't do it by yourself, I guess if. You know this? All of the success of Minerva and the success of OVCARE has nothing to do with me other than You know, maybe creating a coalition of people with the same value system or you know the desire to give back in some way. So, I think all you need to do is fundamentally identify the problem to develop a strategy and then work the plan? So it's, you know, it's not that difficult process, But it feels very big sometimes. And as long as you recognize that you're never going to do this by yourself, It's only through the work and the passion and the vision of the people around you. So that's a life lesson in itself.

00:26:44 Sabine

Definitely. And what do you hope that Gyne Cancer Research prioritizes in the future and in the coming years.

00:26:51 Nancy

You know, I was thinking about that question last night, because it's really not for me to say. There's so much happening, you know, I keep myself relatively up to date. This work worldwide being done around PAR-inhibitors, there’s work being done worldwide about immunotherapy. So, as they learn more about, I mean some very major things have been discovered in Vancouver to date. And so, they know what it’s Like to have success. And it's the brains like the David Huntsman's of this world that are the ones to choose Which path ko along. And you Know there's always culture transitions that are made. And when I say cultural, I don't mean ethnicity, I mean you know what's happening in the world and what people's expectations are. And I think with the scientists and the clinicians that you have In Vancouver, it sets stage for great things to happen in the future. I would never tell them to spend more time in an area. All I can do is sort of present the objectives and you know recently at this event that we have 9 Doctors at The event and we all sort of huddled as the event was closing down And you know, it's been five years, just about five years, since we established the original objectives and so, I've gone through what we what we wrote And what we need to do right now I think is go back and said what our desired outcomes were, And if they haven't been measured, measure the successes in the different areas, See where we're getting money, You know what's attracting donors, And what kind of results we're getting from those specific areas of research, and do another plan. I think that the timing for that is critical For us to look at How things have changed, What Some of the new technologies are, are we taking advantage of all of those? And I think for most part we are. You have to target certain areas. You can't, you know, throw a bunch of paint on the wall and hope it all sticks. But I think the group is very clear on sort of next steps.

00:30:00 Sabine

I think they do a good job in terms of the research moving with the times, what's you know the priority, I think they're pretty good at that.

00:30:09 Nancy

Yeah, I sort of put myself up as a bit of a Guinea pig when I was re diagnosed with, you know, with this reoccurrence of ovarian clear cell because ovarian clear cell cancer is only 5% of ovarian cancers and they hadn't used immunotherapy for ovarian cancer. And I said, well, let me begin, let's give it a try. So, I had 10 treatments of Immunotherapy, and until I couldn't tolerate it anymore. And then I responded very well to the radiation therapy, but I had a limited life there because of my previous cancer and I had 35 radiation treatments then. And then I tried, I've been on a chemo drug, not the traditional 2 drugs that they gave me 20 years ago, and so, we're just measuring results of that. So, you know, I think you have got to be prepared to step out of your comfort zone, both as a researcher, clinician and as a patient. Because this fight's not over.

00:31:33 Nancy

Absolutely. Thank you so much, Nancy.

00:31:36 Outro

Thanks for joining us on the gosh podcast to learn more about the Gynecological Cancer Initiative and our podcast, make sure to check out our website at gynecancerinitiative.ca