Episode 15: Holding onto Hope

On this episode of the GOSH podcast, we are joined by patient partner Nancy Cleveland for a two-part podcast series. 

During a routine laparoscopic surgery for a gallstone in 2019, Nancy learned that she actually had stage 3C ovarian cancer. Following her diagnosis, Nancy joined a clinical drug trial to give back to the incredible research that allowed her to be where she is today. Her journey has had its ups and downs but she continues to believe that there is a lot of hope for gynecological cancer patients and survivors.

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Transcript

Introduction 

Thanks for listening to the GOSH podcast. 

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

Hi I'm Nicole K and I'm Stephanie Lam and you're listening to the GOSH podcast! 

Nicole 

Welcome back to the Gosh Podcast Stephanie and I are really excited to have Nancy Cleveland joining the show today. 

Nancy has lived in Vancouver for her entire life and is married and the mum to two beautiful adult children in her professional life. She spent 35 years as a teacher with the Vancouver School Board. 

In May 2019, Nancy was diagnosed with stage 3C ovarian cancer. After going through what she thought of as a routine laparoscopic surgery for gallstone. Her journey has had its ups and downs but she continues to believe that there is a lot of hope for gynecological cancer patients and survivors. Nancy has had some great experiences with clinical drug trials and research that continues to improve outcomes for patients across BC. Welcome to the show Nancy. 

Nancy 

Thank you, thank you so much. It's exciting to be here. 

Nicole 

Yeah, we're happy to have you today and really grateful that you're open to sharing your story. So why don't you start off by telling us a little bit more about your journey with cancer? 

Nancy 

Sure, I'll do that. 

Uhm, now ovarian cancer, though it's apparently not a very common cancer, it can be quite deadly, and so and, and it's often found late, and that was certainly my case in my story. Unfortunately, right now there's no effective screening tool. 

But yet my journey started much much earlier than May 2019, so I'll go back to the release date. I went to my GP in September of 2018. I'm complaining of pain on my right side. 

And it was a kind of pain that was super abstract. Like is there sometimes I would move somewhere and it would seem to catch it was just really odd and so my GP is amazing and so he said, well, you know, and he poked and prodded, and did a little bit of looking around and and he said, well, you know, maybe it's a __. 

So he ordered an ultrasound for me. And I got that fairly quickly and and that was came back negative, everything was fine. 

Uhm, and so when I came went back to him again because I was getting still getting the pain and and sometimes it would be on the even on the left side but it was very abstract. It wasn't anywhere like I could say oh examine part it was it because it was just so random. Right? 

Uhm, so in October. 

October 2018 he said, you know, I really would like to order another test for you. 

It's a pelvic ultrasound, and he explained how you know the procedure and all of that stuff and he said. 

I just want to make sure that we're not dealing with any bad actors. He's got a great sense of humor. He always says, and so I had that pelvic ultrasound. 

And a couple weeks back it came back negative and in fact I have the X Ray report here that was 2018. That was. 

It says both ovaries are identified and are normal in size and appearance. There are no adnexal masses and there is no evidence that free fluid so. 

That is the test that are under test anyway that is being looked at for ovarian cancer, and so in October that came back to. 

But my symptoms persisted, and uhm, I had occasional pain and stuff. But then I started to have sort of gastro kind of stuff. My bowel movements changed. 

And not that they're any more frequent, but just it was just different and I knew it wasn't me. And so back I go to my GP and just explain this sort of stuff. 

He said, well, you know, I think it's really probably a good idea that we get to a colonoscopy just in case. 

So uhm, and he referred me to a specialist at gastroenterologist. 

And uhm, that took a couple months from I'd say, early November. I was finally seen by the specialist. 

In February and the specialist took a whole bunch of random blood tests and then he started to, from my point of view anyway, it was really trying to see what it wasn't so it and that was a shift because we're not looking for what it was anymore. 

We've seen with them so he had done ____. Was I lactose intolerant? Did I have a wheat allergy? Found that was no. Then we went to IBS. Did I had irritable bowel? No, came back negative. 

Was it Crohn's disease? Celiac disease? No. 

Nicole 

Wow. 

Nancy 

So we went down there, but at no time was to see at ca125 then and looking back on that point when I was referred to this specialist, I wish so much that I had to see a 125 because at least it might have given you baseline. 

Nicole 

What is the CA 125? 

Nancy 

The CA 125 is a cancer marker for ovarian. 

Nicole 

OK. 

Nancy 

And basically to see 125, now that I'm in remission is something that is checked every month and I'll get more part that so. 

Nicole 

OK. 

Nancy 

Anyway, we went all the way through this, so I went back to my GP again. I I still hadn't had the colonoscopy. 

There was a waiting time for that and then I was starting to get pain in my upper part of my stomach. 

And it would seem to be referred over to the right side. He thought, well, maybe it's a gallstone 'cause we're just we're trying. 

We're grabbing strategy in a lot of ways, but he's still trying to find out. You know what it was, and so he ordered a seat medicine TI. Guess it was another ultrasound, but that again was going to be about 5 weeks. 

Six weeks because it was we wanted to be done immediately. 

Unfortunately, in that time we were going to be going down to Palm Desert for the month of March, and so I asked if I could just do it privately and so we were leaving for Palm Springs on March 1st and I was able to get the private CT done earlier in February where the CD or not CD start. 

The ultrasound that was ordered at VGH wasn't going to be until mid March. 

So I had did it privately. It's great. She showed me everything. It was actually very cool. She was saying this is still open and it was very interesting. 

And then she was, ah, there it is. You've got a gallstone hungry. Yes? Why don't we find out what it is? Because that's why I'm getting the pain. And that's why my bowels are sort of a little different. It's it's because of I guess we could go out with. Your gallbladder isn't working properly. You're not processing stuff. 

Uhm, so at that point we were leaving, you know, in the next couple of days, and uhm. 

Because they had the wait list for the - I've done my ultrasound so I thought when I went back to the gastrologist told him I was able to get an appointment in there and he said great. OK then you can we will. The next appointment will do is for a surgeon. 

Uhm, and then that was quite a wait because this was the end of February and the timing of being able to get in to see a surgeon just for console to the end of August. 

Oh wow, with a long time I guess I OK, but. 

At least you know what it is and I'll just be really careful I won't eat anything with that. You know I'll be. 

I'll just be really. I just won't aggravate the situation, especially going down to the States with the medical system. I wanted to be very careful not to eat anything with yeah. Thing with that have. 

Nicole 

Yeah 

Nancy 

You ever gone to a restaurant? How many things have fat? Everything does!  

Nicole 

Yes. 

Nancy 

So it was an interesting month, but I was pretty good and so so. But in that time I was losing weight. There is another symptom. I was still having the pain it was. All over the map pain. It wasn't really all the time, but there was still pain. There was still the gastro issue and now I was losing weight. 

But I put down to losing weight because my diet changed so drastically. I'm really having no fat, but I'm very very strict because I was so worried about being down in the States and having issues down there. 

And so when I was down in Palm Springs, my friend of mine phones means we had worked together with the Richmond School Board on it as a parent group and she said, you know, Nancy, I don't know if you know. But you know, but I am remarried now. And I've married a surgeon. Would you like to see my husband? 

Nancy 

Yeah for sure because uh and and she said, well when would you like to see him and I said, well, I'll be back at the end of March, she said, yeah, I'll make an appointment for you through the end of March. 

So that was game changing because if I had waited till August. 

Uh, it wouldn't have been the same situation for sure. 

Nicole 

No wow. 

Nancy 

So that was very fortunate. Saw the surgeon and he's and he basically said yes, you've got a gallstone. You've got the gall gallbladder disease, or ___ or something. 

Rather like that, I don't know. It's I can't remember it. So now he said, you know when I'm booking into May for surgery, how does that work? Miss it? That's great, you know. 

Or work around your schedule because I'm thinking I'm having to wait for August for consult. Having surgery in May is such a gift.  

So I went into Burnaby General Hospital. It was a surgeon was fantastic. The care there was great. I go in the surgery is laparoscopic so he explained what it was. Maybe a big deal. 

So then I go. 

Have the surgery and I'll wake up and just waiting. Everything was fine. They said no get dressed and just wait for your husband to pick you up. 

And so I'm thinking, great, no more pain. I'm not going to have any more pain and all this month. 

I'm trying to find out what it is. I know what it is and like and so on with life. 

Uhm, but then I look over on the side table there and there is the sheet of paper and you know what? What's that? And I look over and it's a requisition for his PT. 

Hmmm, I'm not sure what that is. 

But at the time I sort of thought well because I had gone through the private ultrasound. She had actually shown my liver and she had shown you know, parts of my lungs. 

I've had pneumonia before. She said that scarring on the lungs there's some fatty tissue on your liver that's very normal, so. 

I kind of thought. Well, maybe they're just going to explore that. 

So I was waiting and they waited for my husband to get there and then the surgeon comes to see me and just the look on his face. He said, you know, I'm really sorry Nancy, but we weren't able to complete your gallstone you still have your gallbladder. 

You still have the gallstone. 

And you also have what looks to be cancer. 

We don't know what kind of cancer it is. It could be. I think he gave me 3 different types, but he said the next stage now is to he was able to. 

Luckily, and I think we've done a lot of surgery with breast cancer in different cancers, so he taken wide margins of the tumor. 

And this helped out a lot down the road when I was in the trial because he he was great. He was fantastic and got things going right away and put me forward to BC cancer. 

And then we went frisky at EC after that. 

And that started the journey to diagnosis with ovarian cancer. So really from September until May 2019, there were definite signs. 

And that's I think the frustrating thing with this cancer is that many others are in the same boat where we know something is not quite right. But the unfortunate thing is that there really is no effective screening tour yet. 

Nicole 

Did ovarian cancer ever come up in your conversations with your GP, or was it something that you were aware of in terms of maybe symptoms or? 

Nancy 

Yes it did. In fact, that was weird. They first pelvic ultrasound was for ovarian cancer. 

Nicole 

OK, OK yeah, and there was nothing there. 

Nancy 

So I mean, I don't think there's many GP's that go there that quickly and I was so thankful because he was wanting to make sure that it wasn't that before we were going on any further down the road. But that came back up. 

Completely clear. 

And so six months a little yeah. I guess it was nine months later I had stage 3C cancer and I guess the interesting thing that I just found out too from researching all of this again, it's been kind of interesting either when the surgeon went into the gallbladder. My ovaries are. Were and this is his word, not mine. pristine. There was no cancer on the ovaries. 

It was all in the fallopian tubes and it had gone to other areas. 

Yeah. 

Stephanie 

Wow. 

Wow, that's really interesting. And I mean what a story. I'm always so taken aback whenever patients share their story, how similar many stories are in the sense that everyone knew they had a feeling that something was wrong. 

They they all had a had this gut instinct that there was something that was just not feeling right, which I think is really goes to show like how women. We're all just so attuned to our bodies and we we just know when there's something wrong and it's really. 

It really strikes me as a something that is a common theme throughout all of these patient stories that I've always heard, but Nancy, can you share more about kind of now that we know how you got to your diagnosis? How was you know the treatment phase? How was that part of your journey? 

Nancy 

Treatment phase was good and the the one thing that I will say that I found out from that pre diagnosis stage is that the necessity to really be advocating for your health. 

I never had had to do that before? Really? I mean, I've always had. I've had two GPS in my life and they've both been outstanding. 

And really, very proactive about if anything is off they will, you know, refer me off to. Whoever is a specialist. 

But it was just in this cold created diagnosis. Everything was coming back. 

But it was. 

Anyway, so did I see, so the actual, the UM, once I was diagnosed I was went very quickly, brought it with quickly within a couple weeks I had an appointment with oncologist. 

So just Doctor Hoskins, who's another amazing and I think the really cool thing about all of this is the team approach and you see that right away with these accounts. 

So there's before I even had the appointment with, say, an oncologist. A team gets together with all of the information that they've got. 

And then the oncologist appointment was great. And even with the surgeons, the surgeons had a team. Everything is very team based and collaborative, which I think is a very powerful tool.

So from there I saw Doctor Hoskins and he explained the. 

Type of cancer that I had and the UM. The chance of recurrence was 85% because I was stage 3C, you're sort of in shock, and you don't. You're just trying to stay above water the water line. There's a lot of information that came up at that point, and part of that information that he gave me was vote. Being on a drug trial. 

So he explained what this drug trial was, and being a teacher and a lifelong learner myself, I was very interested in any kind of drug trials or anything that could be helping out with research. 

So, uhm, he gave me a a package of what this drug trial was going to be about, and I went back and just to read it over. 

And it was at that stage after a couple of days, maybe even a week, that I ended up signing up for the drug trial. And that was really the end of that. Through that period of time. 

From there I had four chemos and then I had surgery with Doctor Merritt Lee, who was against so outstanding and then I had two more chemo's after that. Normally the UM, I think there's normally three chemo surgery and infrequent chemos, but I think there was a backlog of getting surgery time. 

So that was the treatment phase. 

But by face, by the chemo number two was when the first part of the drug trial started and that was the part where they were going to be giving me the immunotherapy, which was another infusion that would be part of the treatment. 

And that that would be the immunotherapy would go with every chemo and then it would go further as time passed. 

Nicole 

And was that part of the clinical trial? Or what did the clinical trial piece actually look like for you? 

Nancy 

Yes, this was the clinical trial Nicole. It was called. The short form is called was called GOTFIRST, all one word, but I'll read you the long names. 

Nicole 

OK. 

Nancy 

With the randomized double blind phase, three comparison of fat and platinum based therapy with T SR-0 42, which is immunotherapy, and miraculous _____ versus standard of care platinum based therapy as first line treatment of stage three or four. Non mucinous epithelial ovarian cancer. 

Well I just call it GOTFIRST. 

Nicole 

Much easier. 

Nancy 

Way easier, and the reason I think it was called drop first is because this part had been given after recurrence and within this trial we were looking at taking the part after you had had the treatment right away. 

Before recurrence and the immunotherapy was all part of that. 

Stephanie 

That's really interesting. 

Nancy, you always speak very highly of your experience with clinical trials. How do you think that the clinical trial that you were a part of changed your your journey and your care? 

Nancy 

Well, it's definitely changed it in every way from number one. I just think it's really important to give backand and again it. 

Just the standard of care. It's already really great, but your standard of care within a trial is out of this world. 

It's it was really, really good. You are watched very, very closely. Do you have a lot more leverage? You have more appointments. 

Uhm, you have, uh, in my case anyway, I had a study drug nurse Paolo was my first one and then there was Candace and both still outstanding. That was so helpful for me, going through treatment when I had questions. I had someone to be putting an email to or to be phoning and just that reassurance and sense of hope who is always there. 

So for sure, I think I would recommend the trial and yeah, it just I just thought it was really important because. 

When I was having chemo myself, I know that someone before me had had to go through a trial in order for me to be at this place to be getting rid of the cancer. At this stage became and so I felt it was really important to give back. 

Nicole 

That’s a really positive and optimistic way to look at your participation in that, and I'm sure you know, down the road there'll be value to somebody else who's been you know, approaching their treatments. 

So that's wonderful. Now that you've gone through this journey with cancer, if you were to go back to when your first diagnosed, what is the one thing that you would say to yourself or or one thing you wish you knew? 

Nancy 

I love that question because, uhm, when you're going through treatment and and this is another part of the journey that I think is super important and that is the community and just that sense of hope because in my pre diagnostic stage you know I had my family. I had an amazing group of friends I had my church community like the amount of people that were rallying around me was fantastic and then when you're in the in the study, you've got a different team and they're all rallying around you. 

So I just think there's just so much hope when I look back on it in the time of my remission and been remission since November. 

There's just so much hope. 

I think that that often hasn't been the case, and I think the one thing for me that I was so surprised that was after treatment, how much fear came after? Because something OK, 85% of us get it back. 

You know those aren't great odds, but you know with my community it just. 

Just living my fear just didn't work. It just wasn't what it was called to do. And out of that sense of fear or replacing fear with, love the lack of a better word, just it it just replace it with hope and that sense of hope just has never ever left m and I think if you have to have ovarian cancer, now is the time to have it because there is so much wonderful research that is going on before me and is certainly going on after me. 

I think having the PARP inhibitors there's some really amazing things that are coming out of that and you have that with first line treatment. We're not sure what that means. 

We'll be learning more. But so far I've been in remission. 

Stephanie 

I think that that's an amazing answer. 

The holding on to hope is incredibly important and a really big driver to many people in any stages of their or wherever they are in life, right? 

Outro 

Thanks for joining us on the GOSH podcast. To learn more about the Gynaecologic Cancer Initiative and our podcast, make sure to check out our website at guiding cancerinitiative.ca.