Debra Walker, a fierce patient advocate, shares her cancer journey after experiencing both cervical and ovarian cancer. She talks about the differences in her experiences...from her diagnosis, treatment and survivorship for each of these cancers. We also get the chance to dive into some of her motivation behind her work in patient engagement and what she hopes her legacy will be.
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The Two cancers were very separate. The treatment was very separate. My mindset was very different. It almost could be two different people having two different diseases.
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 treatment outcomes.
Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic 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 gynecologic cancers.
Hi, I am Nicole Keay.
And I'm Stephanie Lam,
So today, we’ll be chatting with a gynecologic cancer survivor, Debra Walker, who has gone through both cervical and ovarian cancer. She was diagnosed originally with cervical cancer in the late ‘90s and was in remission until her 2017 diagnosis with Stage 4 Ovarian Cancer. Upon the conclusion of her active treatment in January 2018, she entered into an ovarian cancer clinical trial, in part to help inform research on alternative treatment options for future patients. Debra is a strong patient advocate and has been doing patient engagement in research for a while. She is part of the GCI’s Patient and Family Advisory Council and the GCI’s Clinical Trials Group among many others. Progressing through her treatment plan Debra has actively sought out increased exposure to new trials and research results for cancer care and has become proactively stretching her knowledge in areas of advanced care planning, approaches to palliative care, immunotherapy research, clinical trials, impacts of chemotherapy on the development of neuropathy and psychosocial approaches to integrated healthcare along with the scientific research that is being conducted in those areas, irrespective of cancer type. As a Human Resources Consultant, specializing in Psychological Health and Wellness in the workplace she is keenly interested in scientific research as it relates to psychosocial health of patients and caregivers. Thank you for joining us today Debra! Thank you very much for joining us today, Debora, and welcome to the show. So why don't you start off by telling us a little bit more about your journey with cancer?
As you mentioned, my first diagnosis was in the late 90’s in 1998, and it was with cervical cancer and at the time I was living in Alberta. So my treatment was done out of the Cross Cancer Institute there. At the time, it involved both internal and external radiation - and for those that don't know the technical name for internal is brachytherapy. I like to think of it at that time as medieval torture. But that's what I did. Some things that stood out in my mind from when I was there is both the x's that were marked on my back to make sure I was lined up for my radiation, as well as, it was Sandra Schmirler was doing demonstration curling to introduce curling into the Olympics, so I sat during my time waiting to go into radiation watching the Olympics… so the Olympics has a very special place in my heart. Through that therapy then, I was cancer free…. I was declared cancer free after five years and went on about my life, just minding my own business. In the meantime, I moved to British Columbia and continued on with doing things until October 2016 when my sister was diagnosed with endometrial, stage three endometrial or uterine cancer. And so I went back and forth between Vancouver and Edmonton to give support to her primary caregiver. All the while not knowing that in June of 2017, I was going to be diagnosed with stage four ovarian cancer myself. I started treatment very quickly, both in the late 90s - it was discovered through a regular Pap test. That's how I was first diagnosed with my cervical cancer. And I was diagnosed in July of 2017 through, I had metastasized tumors and I had what's known as a Sister Mary Joseph tumor in my stomach so I was bleeding through my stomach. And that's how we started to investigate that. It started off with a trip to the GP who when she thought it had opened into a peritoneal hernia. And we were looking at surgery. And then I went in to say, I think this is something different because A) it's starting to hurt and B) it's going to be two months until I get into see the surgeon to repair this rip. And she said to me for an ultrasound, which rapidly turned into a CT scan, which rapidly turned me into BC Cancer Center, where I was diagnosed without even having a biopsy at that point in time. From there, I was matched up with an amazing gynecologic team that was headed by Dr. Paul Hoskins who helped me through my initial diagnosis and all the questions that come with it. And we started at the end of August, three days after my birthday, on my first round of chemo. The difference between the first one and the second one is the first one was internal and external radiation. The second one was chemotherapy and surgery followed by more chemotherapy. It's been complicated a little bit in that, as a result of the radiation that I had, for the first cancer diagnosis, I had a stricture between my bladder and my kidney, that is required me to go for what will be this Friday, my 10th stent replacement since my diagnosis. So very different kinds of exposures to cancer treatment in two different provinces in three different decades, so very different.
Oh, my gosh, yeah, I can't imagine that could be easy, you know, managing both the different diagnosis at two very different points in your lives, as well as doing it in two different cancer systems in two different provinces, where I'm sure there might have been some key differences. What were some of the challenges and differences that you noticed, between your two different cancer diagnosis, your cervical cancer diagnosis in Alberta and your ovarian cancer diagnosis in British Columbia?
I'm very blissfully able to say that the two cancer systems, both in Alberta and BC, are both strong in different ways. And at the same time, in many similar ways. One of the biggest differences for me personally, aside from the fact that I was married, then and I'm not married now was that in Alberta, my immediate family was there. My support network was very present. In BC, I have a support network, but it's not immediately living with me in my home or down the street kind of thing. And being separated from my family was a much different, my blood family, was a much different experience. I was much younger and probably felt more immortal, that I would live forever in the first diagnosis and more cognizant of the fact, particularly with my sister's recent diagnosis, that mortality wasn't necessarily guaranteed, and it was also at a different stage. So I had to deal with different emotional things in addition to different treatment. I was very pleased when Dr. Hoskins said I didn't have to go through the medieval torture. I did not enjoy that. In fact, going to visit my sister during her chemo sessions in Alberta was just down the hall from the room that I had been put in for my solitary confinement - because it was very different. Brachytherapy in the late 90s, for me, was 52 hours of solitary confinement, locked in a room. No one was allowed in…if the nurse came in for any reason, they turned off the machine and the clock and then restarted it when she left. People would look at you through a little window and that's how you got to visit people. As you're laid out on the bed, they'd be looking at you through a little window and waving. My doctor told me to go for a really good meal - we won't call it a last meal - before I went in for my procedure to put in, and what they do is they embed the radioactive seeds onto the cervix, and then they leave it in there to do its thing. Knowing that you're in there, and no one's allowed to come in because of the risk of them to radiation was very mind bending for yourself. Knowing that no one else was allowed in, but there you are, you're exposed to it. So what's going to happen as a result of it. Not really understanding the implications of what that meant. First they tried to bring me food, but you couldn't raise yourself off the bed so you had to feed yourself by hand. And one of the meals I remember was pork chops, mashed potatoes, and peas and that's really not something that's not really easy to feed yourself by hand. So we decided we didn't need food after that for a while. And then never been through medication that prevented you from any kind of bowel or bladder movement for 52 hours. So you come out of the end of that, not being able to walk, and you don't realize how quickly you lose the facility of being able to walk. Like I said, in the chemo room with my sister, looking down the room, and you can almost feel like it was pulsing. It was like yelling at me from when I had been in there and that was 20 years ago. So you don't realize the psychological impact of what it is that you're going through. So when I got the next diagnosis, it was a completely different way of being diagnosed. But like I said, I was very happy when Dr. Hoskins didn't put brachytherapy on there as an option. But then surgery scared the heck out of me. Fortunately, I also had one of the founders of the gynecologic program in BC. So I had Dr. Miller, Dr. Diane Miller was my surgeon. So I've really been blessed. I've had some amazing people on my team and that has made the world of difference. And then also to have Dr. Tinker involved. And it's just been, it's just been great.
The difference was this this before, in the first diagnosis, you would tread your way on to was the middle of winter, it was in Edmonton, it was not a fun time all the way around. But the treatment period was relatively short, because I first did six weeks of radiation. The thing that you both loved and hated at that time was when they would shut down the radiation machines for fixing and you go “yes, I get a break.” And then at the same time, you'd say “oh, my goodness, this is going to be now one week longer.” Coming into the cancer center, and you just put it on automatic and you just head to where you needed to go. It was a new experience. I was pretty young and naïve and didn't ask a lot of questions. This time around, I was older and it was more serious. And so I needed to ask different questions and make sure that I was satisfied with the answers. And I'm very fortunate that I feel comfortable doing that. I also know that there's many patients who don't, who are just overwhelmed by the whole process, either language, culture, just everything. And maybe don't have - I was blessed to have an amazing support network here. And I'm also blessed to be just literally over the bridge from the Cancer Center. So I would leave at the beginning… the first half of my cancer of my chemo, I would walk. I would leave my house here and then by the time I had walked over the bridge and walk to the cancer center, I had shifted my mindset. Then I was ready for what I needed to do. And then I had someone bring me home. Halfway through that I had the surgery. And just before that I had my first stent replacement, because the radiation had caused such a stricture, it was causing problems. So my kidney was starting to give me more problems in some ways than the cancer was. So at the beginning of November of 2017, I had my first stent replacement. Three weeks later, I had my full TAH BSO…I just like being able to say that. For the most part, I can tell you what it will stand for. And then the recovery for that and then while you're recovering from that, then you start back on the second half of the chemo.
What Deborah mentioned here as the THA BSO is an abbreviation for a type of surgery that many gynecologic cancer patients have the option to receive. The TAH stands for a total abdominal hysterectomy, which is the full removal of a patient's uterus. And the BSO stands for bilateral salpingo-oophorectomy which is the removal of both the fallopian tubes and ovaries.
And so by that time, no, there was no walking anymore. But that's okay, who wants to walk across the Cambie bridge in November and December anyway? So that made that decision easier for me. The two cancers were very separate, the treatment was very separate. My mindset was very different. It almost could be two different people having two different diseases.
Thanks so much for sharing that with us Debra. I think that also goes to show that no cancer journey is the same. I mean, even you as one patient going through two different gynecologic cancer diagnosis can have very different experiences and very different emotions along the way. While handling each diagnosis, you know, going through both cervical cancer and ovarian cancer couldn't have been easy. But I've always been in awe of your strong interest and your passion and giving back to the research community and offering your wisdom to support the work that we do. Nicole also mentioned that you are part of a clinical trial, could you maybe speak a little bit more to how that has been and how that's impacted your cancer journey?
At the end of my active treatment, I finished that in January 2018. And in the end of February 2018. I started on a clinical trial, which is blissfully for me also headed up by Dr. Hoskins. So I was able to continue on with the same oncologist and the same team of caregivers, which has been wonderful. And so I've been on that cancer trial now, since well for two and a half years. And happily so.
I'm so glad to hear those clinical trials really do make such a big difference.
They do they do. Part of what I've been able to do through this process as well, I sit on the clinical trials group also for gynecological cancers but I also sit on the Prince George clinical trials group. And I was lucky to participate as one of the BC representatives at the 3 CTN which stands for Canadian Cancer trials. And I participated in the conference in Toronto, last November, as well as I was also able to participate in the Canadian research conference that was held in Ottawa last November. So I've gotten a chance to see cancer trials from a lot of different perspectives that I never ever expected that I would.
You know, I'm really glad that there are so many opportunities for patients to be able to get that other side and other perspective related to their care through these patient engagement opportunities. You mentioned earlier, and I know that you're a part of so many different patient engagement opportunities. And clearly that's a really important part of your current cancer journey. You know, could you speak a little bit more to your motivation behind why you like to engage in these opportunities? And, what value does it bring to you right now?
I think it's a very important thing for people to do. One of the reasons that I like being involved in it is that I believe that my treatment is not done to me, it was done with me. And in order to be done with me, I have to be as informed as possible about what it is that I'm going to be going through, what it is that I am going through, what can I expect, what kinds of questions I can ask. I mean, even the difference between my first diagnosis and my second diagnosis, in some ways, I mean, it was a much lower stage diagnosis the first time but it was the first time that anybody in my family had been exposed to cancer, like my immediate family. And so it was a whirlwind, it was a whirlwind, from diagnosis through to sitting at home going, “Okay, that's over what just happened to me.” And just continuing on, it was almost like a practice round. And little did I know that I get to use that practice a little bit differently. So when my diagnosis came around for the ovarian cancer, once you absorb the fact that it's a different stage and you're going to be going through different kinds of treatments, you have a better idea as to what kinds of questions to ask. And, and you're less shy about asking them and if you don't ask them, being involved in a number of different initiatives have really helped me answer questions that I either didn't know that I had, or didn't know that I would have, or help me and participate in making it easier or less complicated for other patients that are going to be going through this because it doesn't stop with me. And quite the opposite. Diagnoses are coming fast and furious. And one of the reasons why it's important for us to participate in what's going on, what's being researched, what tools are available to patients is, is because there is capacity, we have most amazing people that are working in the cancer system in the health care system, specifically in BC, all of Canada and around the world. But there's a limit to how many people can deal with how many people. The volume of patients that are coming in is huge. And the amount of personal care that practitioners and professionals want to give is sometimes outstripped by the capacity and the time that they've got to give it and so patients are another way, patients that have gone through it, patients that are that are helping with building communication tools with the research that's being done, are complimentary to what the professionals are actually out there unable to do. And one of the activities for example, this will be my third year, we're just getting started on it is I sit as the patient rep for the awards of Excellence Program that BC Cancer has. And it was important for me to help participate in a way of recognizing the sheer diversity and talents and heart that is out there in the form of every from researchers to face to face practitioners to everyone. And it really opened my eyes to all of the people not just the ones you see that are giving cancer care and it's a whole different world. It's a different world. It's, it's been really cool. Another way is, I mean associated with gynecological cancers. I've had one maternal aunt pass away from breast cancer, I've had another maternal aunt with two separate diagnosis. So it was important for me to participate in the tissue bank, the tissue bank became a very important thing for me to contribute as well as the genetic testing, just to make sure and again, to help inform some of the research that's happening there to find out if there's a way that we can diagnose gynecological cancers sooner than what they are so that we can help reduce the fatalities and the and the death rate by getting more people at the stage one and stage two then when I get it at stage four. Yeah, it's a really important. Part of being diagnosed with stage four Is that you tend to start thinking about things like your legacy, and what does your legacy mean. And to me, legacy doesn't mean a plaque or someone remembering my name. I'm pretty sure that the vast majority of us two or three generations in will not be remembered by name or what we did, what we accomplished, what we achieve. But part of my legacy is in contributing to informing what tomorrow looks like for future cancer patients. That's, that's going to live on well beyond me. And that's an important part of why I believe engagement is very, very important. Everybody should do it in, it enriches. It sounds like a weird thing to say it enriches your experience, but it makes it more concrete but at the same time, it reinstills hope. And it may not be hope for you, but it's hope for many, many, many people, far beyond. So that, to me is very, very important. I think that's the majority why people are probably in research is making that lasting impression that says I may not be the end, the end game or the end zone, but I'm a stepping stone or a factor that moves things far beyond what I could do on my own.
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.