Myriad Oncology Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit myriad-oncology.com/myriad-oncology-live for a list of dates, times, and subjects.
Myriad Oncology Live episodes are recordings of an open-forum webinar hosted by Dr. Thomas Slavin. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, visit myriad-oncology.com/myriad-oncology-live for a list of dates, times, and subjects.
0:00:11.5 Dr. Thomas Slavin: Welcome. This episode of Inside the GENOME is a recent recording on Myriad Oncology Live, a webinar hosted by me, Dr. Thomas Slavin, Senior Vice President of Medical Affairs at Myriad Oncology. The opinions and views expressed in this recording do not necessarily represent those of Myriad Genetics or its affiliates. To participate in a future recording, please visit Myriad Oncology, for a list of dates, times, and subjects. I look forward to exploring the world of genetics with you all.
0:00:39.7 DS: Okay. Hello, everyone, and welcome to Myriad Oncology Live. We have a fun show today. We're joined by two special guests, I'll introduce them in a second. A little housekeeping to start, as always. This is Myriad Oncology Live. If this is your first time here, just know that you can ask literally anything you want. We do these theme-based, but they're an open door discussion to the medical affairs team at Myriad, anything that's really on your mind. Today we're talking about cancer survivorship. However, if you have a burning question about polygenic risk score and missed out last week or something, and you wanna really just get it addressed, that's fine, we can work it in towards the end, just let us know.
0:01:28.0 DS: As of a few weeks ago, we did start recording these just because we have so many people that wanna come on but can't make the times. What we're doing with them is not showing the video though, we're just showing... We're just uploading the audio. And we're putting it here, and I'll show everyone because we've been pretty active in this space. This is the Inside the GENOME podcast, which I run and Shelley helps me with as well. And, A, it's a good podcast. It's the only podcast on cancer genomic, so definitely check it out if you have not. These are about 15-minute talks. You'll see here, I did one with Annie Parker, who's on today. And so that if you either miss today or have to jump off early or something, there's already that podcast.
0:02:25.8 DS: And then what we've been doing with the Myriad Oncology Lives... And I forgot to mention this, but we probably need to define this a little bit better because no one's gonna know what MOL means, but essentially these are... Now where any of the ones that say MOL or the Myriad Oncology Live, those are just the... That's just the recorded audio from these webinars weekly. These are about 45 minutes, whereas the regular podcast are about 15 minutes. We clearly have some clean-up to do yet, so I'm just letting people know how this is shaping up at the moment, but hopefully we can clean it up a little bit more as we go forward.
0:03:06.1 DS: Today, we're talking about cancer survivorship. And then we have a bit of a break, and then we're gonna come back in mid-July, just because I know a lot of people are taking vacation and different things, kids are out of school, or at least not having to sit in front of virtual Zoom classrooms anymore, but we'll come back with rare hereditary cancer genes. I'm also building out into August, we already have some topics planned. But if there's anything that you really want to hear a topic on, let either me know, let Shelley know, Shelley is also gonna be running the chat today, so definitely unmute yourself, ask any questions that you want. But if you'd rather just send a question, you can send it to the chat or you can send it to Shelley who will also make sure it gets addressed.
0:03:57.0 DS: Okay. So, without further ado, I'll introduce our two guests. We have Annie Parker, who I already brought up a little bit. I won't do too much of an introduction... We'll definitely let you get into your stories and how you came to being on the podcast today. And then we are also joined by Laurie MacCaskill, and they are both cancer survivors. Annie has had multiple, and is also a BRCA1 carrier. And Laurie has made it through pancreatic cancer which, as many of you know, a few people can say that. She's many years out, so it's great. And I think just having them on, and listening to their perspective and what they're doing in the advocacy realm is just nice for all of us to hear. This is why we're doing what we're doing. We're either... If you're listening to this, you're either probably involved in some way shape or form of trying to keep people cancer-free, trying to prevent second cancers on the hereditary side, trying to treat cancers in some way, shape, or form. So, we're all a team, and it's nice to have the people that have really gone through it. And some of you out there have also gone through cancer, and you're part of the treatment, but it's nice to have perspectives from multiple people.
0:05:21.0 DS: Let me... I didn't really have a great way to introduce people, but I would like to hear from Annie and Laurie, just how they got here today essentially and where things are going. But really I think to start, maybe a little bit of background. I guess I could probably coin flip here. Alright. It's heads, so heads is Annie. We'll start with Annie. Annie, are you available? Feel free to unmute yourself. And if not, that's okay. She might be busy. I see Laurie has already unmuted, so early bird gets the worm, Laurie. Do you want to tell people a little bit about yourself? And then we'll see if Annie can fix her audio, hopefully.
0:06:26.5 Laurie MacCaskill: I am so happy to be here celebrating cancer survivor month for everyone out there, but I'm especially happy to be able to... For myself, this month, I celebrate 15 years of pancreatic cancer and almost one year for endometrial cancer. I was diagnosed last year during COVID and had surgery for that. But as we know, I've learned so much about the world of cancer and genetic testing. I was 55 years old, perfectly healthy, exercise enthusiast, diligent about my check-ups. Other than a cold and a flu, I've never been sick. And it was a back ache. And for those of you out there, please don't think, because you have a back ache, you're gonna get pancreatic cancer, but I really encourage everyone to learn and understand what the symptoms are of pancreatic cancer because, as you know, Dr. Slavin, you do not have the luxury of time. And it's really because I use my voice, I was persistent thinking I just needed an antibiotic, but I never once thought cancer.
0:07:38.3 LM: So, years of chemotherapy, almost four years of multiple surgeries, and I was told to get my affairs in order, "You have three to six months to live." Well, that was 11 years ago, and I'm very happy to be here cancer-free and celebrating life. And through my intuitive skills and really expertise and cancer journey, I now guide and coach others on how to navigate a challenging journey, and how to really take charge and be empowered interacting with healthcare professionals, with family members, and just really not only thrive but survive this challenging journey. And I'm so happy to be able to collaborate with Myriad, because I've learned a great deal in the world of genetic testing and how you all really are the gold standard and the importance of genetic testing, so it's an honor to be here.
0:08:41.0 DS: Yeah. No, thank you so much for coming. I didn't know you had endometrial cancer, too. Wow.
0:08:45.6 LM: I did. I did. Yeah.
0:08:48.7 DS: What kind of pancreatic cancer did you have? Did you have...
0:08:53.3 LM: Adenocarcinoma. And, Dr. Slavin, I was fortunate in that it had not spread to my liver. It had spread, and I was advised to start on chemotherapy and not have the Whipple surgery. Unfortunately, complications thwarted that, and against some doctor's advice, I did have the Whipple, and I'm so glad I did. Complicated surgery, as you know, and recovery was difficult, but I believe the most important thing is certainly, in addition to going to a centers of excellence and interacting with the best health care professionals, is your mindset. And I just never really focused that I have cancer, I could be dying, all of the statistics are against me. I really thought, "I'm gonna fight this fight, I'm gonna be my own person." I wanted to kind of practice an artful or healthy denial. I never asked, "How long am I gonna be on this chemo," or "What is my prognosis?" And that worked for me. And it was taking baby steps and really believing in myself and trying to live a quality of life, obviously it's altered and it's completely different, but really taking that step and never ever giving up, and I believe that's so possible for everybody out there.
0:10:19.4 DS: Yeah. So, here you are, you're 55, I'm assuming you went into emergency room or something with some... Your back pain. How did... If you go back in time, you're getting your evaluation and kind of like... When did you first hear that word?
0:10:39.4 LM: No. Actually, I will correct that because it was a consistent back pain. I experienced something almost as if being... I've never been electrocuted, but it sort of felt like that, I had this incredible pain starting at the top of my head that went through my entire body for only about five or seven seconds, but what remained...
0:11:00.2 DS: Just one time?
0:11:00.6 LM: One time only.
0:11:02.0 DS: Interesting.
0:11:02.6 LM: And it was just as if I was on fire, it took my breath away, I almost passed out. And what remained was a pain in my lower back on one side, about the size of a tennis ball. And this was consistent, it never ever subsided. Sometimes it was so debilitating, I could hardly get out of bed. Most of the time, it was just annoying. And I remember the next day, I was race walking with some girlfriends and we go pretty fast, I was in New York at the time, and they said, "Oh, the pain is probably from your heels you wore at the party last night." We just attribute it to something that is something else other than being sick. Days later, when I returned to my home in Los Angeles, I didn't even know what kind of a doctor to go to, and I went through a variety of doctors, and everyone dismissed me. "No, you pulled a muscle exercising. It's your imagination."
0:11:52.9 DS: So you did see some doctors that, yeah, just...
0:11:55.6 LM: I saw many doctors for months.
0:11:57.9 DS: Oh, okay. Wow. Yeah.
0:12:00.4 LM: And X-rays were taken, and I kept begging for tests or something, "I need an antibiotic. What's wrong? This back pain never goes away." And finally, I asked for a scan. I had never had one, so I didn't know what I was asking for. Is it an MRI? Is it a scan. What kind of...
0:12:16.6 DS: So you felt like you were having to advocate for yourself.
0:12:19.0 LM: Exactly. And that's what I want people to know, is use your voice, because sometimes we're overlooked. When they told me, "Laurie, it's your imagination, nothing's wrong." I am a reasonable patient and there was a pain and I was experiencing something very, very uncomfortable.
0:12:39.0 DS: Yeah. Did you have anything else going on? Were you not eating a lot, or sleeping okay?
0:12:44.2 LM: No. I've always been petite, I lost a little bit of weight. And then finally, after they did the endoscopy and biopsy, and when they said, "Laurie, I am so sorry, you have pancreatic cancer," I literally said to the doctor, "That is a death sentence. You have the wrong file. Would you please get the right file?" Honestly, I was in complete disbelief. And I barely knew what the pancreas did. I was very naive and not educated in that department. And as I said, quickly started on... Well, let me back up. The most important step, I believe, after a diagnosis is getting a plan in place. And I was fortunate to be surrounded by a lot of loving friends, providing resources, found an oncologist, and started immediately on a pill form of chemotherapy.
0:13:37.6 DS: Oh, before even having the pancreatic surgery and everything?
0:13:41.0 LM: Yes. Oh, yes.
0:13:42.3 DS: Oh, wow, okay. 'Cause that was pretty rare back 11...
0:13:46.0 LM: Fifteen years ago, 2006. Yes.
0:13:50.1 DS: Neoadjuvant therapy, yeah. So you had then... So you were on the therapy for a while, and then you had your surgery and had it removed. What were those kind of feelings when you had it removed, where you're just thinking, "I'm done with this"? Or were you just... It sounds like you're a very positive person. Were you... Yeah.
0:14:15.0 LM: I am, but I was... I had never been in the hospital. And this was all... It happened quickly, but the therapy, the chemotherapy on the pill was thwarted because my liver was being crushed, and they put in stents, and I had to have two back-to-back surgeries, and never left the hospital, and followed up with the Whipple. And honestly, I believe that I was in this complete state of shock, which I know every cancer patient out there can relate to. It was disbelief. I really didn't know what was happening. I was in a lot of pain, and I believe the most important thing at that time was I really believed and trusted in my doctors. I didn't have a long relationship with them, I had just met the surgeon, I had just met the oncologist, but I had faith in that I knew that they were there for me and that this was the best decision that I could make. I did some research, should I be in another hospital somewhere else and so forth, and all of that was done very quickly. But I have that faith in them and in myself that I would come through this, not knowing that it would be years of this protocol, and this type of, well, therapy that...
0:15:37.5 DS: Yeah. You were probably just thinking of it in the moment. You were probably not thinking about the... All that's in front of you.
0:15:42.4 LM: Exactly. And again... On day six, they told me I would be in the hospital for two weeks. As you know, recovering from the Whipple surgery is complex and challenging. And my...
0:15:55.0 DS: And for those that... We should probably... Probably most people know what a Whipple is, but essentially it's pancreaticoduodenectomy. You take your pancreas out with most of the duodenum. There's a lot of re-plumbing that goes on as part of it. But, yeah, usually you're left with a standard Whipple with no pancreas at that point.
0:16:15.3 LM: Right. I do have part of my pancreas, fortunately, so I'm not a diabetic. And they say it's the most complicated abdominal surgery. And literally the second day after the surgery, I was up walking... Shuffling the hospital floors five times a day attached to machines. But I was so bored, I couldn't just lie in that bed. I'd never been in the hospital, as I mentioned. I couldn't focus. I love to read. It was just unlike anything I'd ever experienced. So, I was getting that mindset going and I just thought, "This is going to distract me, this is going to occupy the time." And I did that every day. And then on day six, my adorable surgeon comes in in a starched coat, and he looks at me and he said, "I just don't believe this, Laurie. I guess this is what my wife does, but I've never seen it done in the hospital." And I had a manicurist and a pedicurist. They were in white coats, giving me the manicure and the pedicure. And I looked at him, and I said, One more day here and it's gonna be the hair dresser, and I was told to check out the next day. But again, that was really trying to live my life as normally as possible in completely different circumstances.
0:17:31.3 DS: Yeah. And that was a thought of... Oh, go ahead.
0:17:34.0 LM: No. I was just gonna say the self-care is so important for every patient.
0:17:38.8 DS: Well, that's what I was wondering. It's not like you were just waiting around for cancer to come. You had a whole life obviously going on that just stopped for the most part, probably. How did that... How did you work through all that? And I see a question by Robin Palmer in the chat about how did you tell your friends and family and even broach those subjects?
0:18:05.0 LM: It was very difficult, and everyone was, of course, in complete shock because I'm the one that I can't eat enough green vegetables, and I love exercise, and I'm incredibly healthy, and they would say, "Oh, my gosh, if Laurie got this, what's gonna happen to us?" But it was... After a while, you learn to manage those conversations, and boundaries are really important because it's overwhelming. Everyone is coming from love, wanting to help you, "You've got to go here, you need to do this." And I think managing all of that is so important. I took really good notes. That record-keeping was another element in my managing this journey and saving my life, and I just wrote everything down, and I didn't respond or react to everything right away. And I was very open with my friends about what I wanted to talk about or what I could hear or not hear. I didn't want them to ask me, "What's next?" Or, "What did they say, what's the prognosis?" I didn't wanna go down that road, because I myself really, in many ways, didn't want to know. I wanted just to know what's the next day. Baby steps, that's all I could handle. And that really worked well for me.
0:19:24.0 LM: And again, Dr. Slavin, it was just living my life as normally as possible. I lived in Colorado part-time and in California. And my oncologist was fantastic because he let me... I was able to have my treatments up in the mountains, and I was able to manage the altitude and ride my bike. And even though I didn't have my hair, I had my bike helmet, and I was able to give myself infusions. It was just a way of managing it, that I stepped outside of the box, but I did it carefully, I did it responsibly, and I believe that I really was adding another dimension to my life while I was being told I probably won't make it, I have months to live.
0:20:10.7 Shelley: Laurie, I have a question. I think your story is absolutely inspirational because you don't hear those stories, and those number of years typically after somebody's been diagnosed with pancreatic cancer, and so it's truly inspirational to hear this. I'm very curious how you've managed the negative side that might have been presented to you, like, "Oh, my gosh, this is not how this normally works," and the psychological aspects of that? Because you're proving a lot of beliefs are wrong, and I'd like to hear more about that.
0:20:54.3 LM: In my interactions with my oncologist, I never asked, "What do you think the prognosis is? How long am I gonna be on this drug? What should I expect next?" Because honestly, Shelley, I didn't want to know. Again, I just took it a day at a time. It was... You could call it a healthy denial. I normally like to get the answer, I wanna be informed. I was married at the time and my husband did the research, I did not wanna read the statistics. I started, they were grim, they were negative, that did not serve me well at the time, and I really just thought that I'm gonna manage whatever that day brought for me. So when I would go to my chemo treatments, I would take a large satchel of all my newspapers, and my magazines, and my computer, and my iPad. And sometimes I couldn't read any of it, all I could do was lie down because I didn't feel well, I was in pain, I was fatigued. And other times I would charge through. I learned how to manage the sessions afterwards, and the side effects, so I knew for a day or a day and a half or two, I felt fine. So I would travel, I would organize my meetings. Again, tried to live my life as normally as possible and put this in the back of my mind, I didn't focus on it.
0:22:19.4 LM: And that doesn't mean that there weren't the horrible side effects, and I wasn't in pain, and I wasn't scared. I would pray, I was spiritual. I would keep a gratitude journal. I didn't call it that at the time, I just started writing down simple little entries. "Shelley called me today, I had the best conversation. I love the view from my bedroom window. I was able to take a nap for the first time, uninterrupted for two hours." And then at the end of the week, I would re-read all of these entries and they just... They made me smile, they made me cry, they made me remember all those little things that, in my normal life, I appreciate it, but honestly not to the depth in the level that I did at this point. And that was a whole new landscape, a palette of colors just came alive that I really appreciate it later. Not at the time, 'cause I was only trying to survive the next hour, get through the day.
0:23:24.5 DS: Yeah. No, that's incredible. And I do wanna... I'd like to go to Anne, Annie Parker, a little bit, and then let Annie tell her journey a bit, and then we'll... And then, yeah, I think... I don't know if you two have ever met each other, but...
0:23:41.9 Annie Parker: No, we have not.
0:23:43.8 LM: I'm so honored to meet you, Anne.
0:23:46.1 AP: And you, Laurie. I am just sitting here, we have so many differences to our story, but we also have a lot of similarities and just bringing me to tears, honestly. So inspirational, as Shelley said, and what an incredible lady.
0:24:04.9 LM: Thank you. Well, your story is amazing, and I can't wait to hear from you. So please share.
[chuckle]
0:24:09.7 DS: Yeah, yeah. If you wanna let the audience know just... And the audience is largely a provider audience, people taking care of people with cancer. Some may know of you, but probably many do not yet, so if you wanna give people a little rundown of how you came to be in here, that would be useful. Yeah.
0:24:29.8 AP: Yes. Yes, and thank you very much, Dr. Slavin, to have me back again. It's just so wonderful. I often say and often felt that I had cancer even before I was born, because my mother actually developed breast cancer when she was pregnant with me. She didn't choose to do any kind of treatment while she was carrying me, but when I was born, she went through... Had a complete mastectomy. Now, we're talking back in the '50s, so a complete mastectomy...
0:25:07.1 DS: Yeah. How old was she?
0:25:07.2 AP: Sorry. I'm sorry, 48.
0:25:11.7 LM: When she had you?
0:25:12.8 AP: Yes, yes. It was pretty late in life. I think I was a bit of an accident, but I was the third of three children, and I only remember growing up always being looked after by aunts and never getting to know my mom really well because she was always ill. She had cobalt treatment back then, which made her stay in bed for days on end. So, fast-forwarding a little bit, that was in the '50s, and then in 1978, my sister was diagnosed with cancer. My mother died actually when I was 14, which is a very impressionable age to lose your mom, and it was all very sudden. Nobody talked about cancer back then, I didn't know what the word "cancer" meant. All I know was that my mom was really sick. And my dad was one of these people that just wouldn't talk about it, so there was really no discussions around the dinner table about how my mother had died.
0:26:21.1 AP: I got all my information from my older sister, Joanie. Joanie was 10 years older than I was, and when she got sick, she told me that it was breast cancer, that was the original site, and that had taken my mother's life because it had gone to ovarian cancer. So my sister just became my best friend, my mother, I looked so much up to her. And when she also got sick, I just couldn't believe that this family could have so much bad luck. It was almost like a family curse to me. And at that time, it was like 10, 12 years later, but I was still only in my 20s, and I just knew there was something more working in our bodies that had to do with something medical. My sister passed away two years later, also my first cousin passed away, initial site breast cancer, brain cancer for my cousin, and ovarian then bowel cancer for my sister. So I became very much, I guess, feeling that, who's gonna get this next? And then it was all the women in my family, and I really felt that I was going to develop cancer. And I became a bit of a hypochondriac for every issue, every pain, every ache I had, I always thought this has to be cancer.
0:27:52.8 DS: Yeah, understandable.
0:27:54.2 AP: Yeah. And because, again, back then, nobody talked about this, nobody told me, or at the time there wasn't much history or anything to do with genetics. So, at the age of 29, I did develop breast cancer. I actually had a complete hysterec... Sorry, a complete mastectomy at that time. Hysterectomy came next, and that was in 1980. And then in 1988, I was diagnosed with third stage, almost fourth stage ovarian cancer, at which time I went through almost a year, I know, Laurie... Almost a year of chemotherapy treatment. And still I couldn't believe how this could have no medical link to it, because again, in 1988, there was no discovery about the BRCA gene.
0:28:53.9 AP: So, fast-forwarding, my oncologist here in Toronto gave me a call and said that they were looking at and there had been a BRCA gene mutation discovery, and would I be interested in being tested. And I didn't have to think twice. I said, "Absolutely, I need to know why my family suffered so greatly and I lost so many family members from cancer." So, I was one of the first to be tested for the BRCA gene mutation. It was done, the testing was done here in Toronto, took almost two years to get my results, but I do carry the BRCA gene mutation. And I get asked this question a lot, and that question is, "What did you think when you first found out that you had the BRCA gene?" And honestly, nobody I know would ever say this, but I was elated. I absolutely thought that, now, I could fight this. Now, I had a reason behind knowing what was killing, as I said, most of my family, the females in my family.
0:30:10.8 AP: I know we've come a long way. I know with companies like Myriad Genetics helping, but I think we still, from a patient perspective, still have a long way to go, because I still think, many people think, and we're here to prove Laurie that it's not the case, that when you're diagnosed with cancer, it's like a death sentence. And that's why we are advocating so much for patients, and I also had a movie made about my life called "Decoding Annie Parker." Like Laurie, I kept a journal, I wrote everything down, I had such chemo brain that I had to put it on paper. And it was all that journal information that I had logged that brought Hollywood to me and asked if I would be interested in actually having a Hollywood movie made about my life and the life of Dr. Mary-Claire King, and we all know who she is. I agreed to that because I didn't want one other person to suffer like I had. And so we had some really big stars in the film, and then I went on to write my memoirs, which is "Annie Parker Decoded," which I have right here. And the book was written from the heart. Hollywood, it was about 80% accurate to my life, but they did tell me, the producer did tell me that they had to put in some humor. They couldn't make a Hollywood movie about my life the way my life played out, they had to add some humor to it.
0:31:50.3 AP: So that's kind of where I was at, and then I just decided to advocate even more, and to leave a legacy, and to help out the cancer community. I started my own foundation in 2018, called the Annie Parker Foundation. And, yeah, that's kind of where I am today, and we're gonna do our first virtual event on August 21st, called A Second Act. Yeah.
0:32:17.2 DS: Yeah, that's great.
0:32:18.0 AP: And, Laurie, you should look into it. You'd be great at joining that event.
0:32:23.7 DS: Yeah. Shelley, put your link in the... The Annie Parker Foundation link in the chat, I put Laurie's as well.
0:32:32.4 AP: Awesome.
0:32:33.4 DS: And we have a question from Robin Palmer, and she says, "What words of wisdom do each of you have for us providers for our interactions with cancer patients, especially when the prognosis is poor?" That's a very good question, Robin. I don't know who wants to jump in first.
0:32:53.6 LM: Annie, do you wanna start?
0:32:56.1 AP: Sure. Words of wisdom. Well, I've always fought this disease really hard. I've been asked this question a lot, I actually... Survivorship to me just means supporting and comforting other people, so I think you're doing an amazing job. I've been asked by geneticists, genetics counselors, it's just make sure that you listen to a patient, because everybody's body is different, everybody's mental capacity to absorb information, as you had said, Laurie, is different, everybody handles things in a different manner. I was the opposite, Laurie. I wanted to know everything because my circumstances were very different, because losing so many family members. I understand where you're coming from, but the more information I had, especially in regards to the genetics, it would help me survive and help me fight this better.
0:34:03.5 LM: I absolutely agree. And what I know now and what I've always known and believe, knowledge is power, and finding out as much as we can with regard to the situation and working with certified genetic counselors or in our healthcare professionals. And for them, and as you said, listening is so important, and not assuming things, and really take each patient and each case individually, and understanding and giving them the time... I believe in being truthful and really not sugar-coating, we want the truth, and living your life with as much quality as you can, and really understanding what the next step is, and how to manage that, I believe, is important.
0:35:01.4 AP: Absolutely.
0:35:03.8 DS: Yeah, absolutely. Some of the hardest things from a physician standpoint, and many people on the line probably had some aspect of this in their career, but sometimes you are seeing that patient that doesn't have hope, unfortunately, that is literally on their death bed, and it is a very... It's a hard situation. And I've always been surprised personally at how much laughter there still is, in a sense, and joking that'll go on sometimes in those rooms with the family member and their family. My experience hasn't been as dismal as you would think from that, if you were looking in and saying, "You're about to walk into a room of someone that is like, maybe not gonna be here in a week," kind of thing, that they're just on supportive care at the end of their hospice career or whatever it is. But, yeah, that levity really, even if you don't have the hope sometimes, just that, just being able to banter and still see a reason for helping others is a big part of it.
0:36:23.9 AP: And not feeling alone either, Dr. Slavin. I think there is so much more communication today than there ever was in my time, and as you said, Laurie, it's just being honest with your patient. And may I say with doctors years ago, and this has changed dramatically, which I'm so thankful for, doctors were up here and patients were down here. I always remember going into when I had my ovarian cancer and like you, Laurie, told to go home and get my affairs in order, and I recall these doctors... I felt so small because this doctors' desk, it's like the latents were cut off where the patient was sitting. I was actually looking up at this doctor, and it just... I felt I wasn't on the same level at all, no pun intended, but I wasn't.
0:37:19.4 LM: I can't believe you said that because, Annie, because last year in August, when I was interviewing surgeons for my endometrial cancer, one surgeon, he has a great reputation, excellent, but in the personal interaction, it just did not work for me. And I shared the feedback later when I selected another doctor, he wanted to know why I wasn't going with him, and part of it was really the assumption, just what you talked about physically, how we were sitting, and I was looking at him, and the attitude right away it was, "Well, you're a diabetic." "Well, I'm not a diabetic." He said, "Oh, yes, you are, because you've had your pancreas removed." Well, I've had part of it. That was just the first step of a conversation that did not go well, so just the assumptions were incorrect.
0:38:12.0 AP: That's right.
0:38:13.3 LM: And not really understanding... Looking at all the files that I had sent, I was very, very good with record-keeping, and I wanted to make sure that he was informed and knew everything. But I think it's the compassion, it's the understanding, it's the listening. And for us patients to not be afraid to ask for help, that vulnerability, I learned so much about it in my journey.
0:38:37.2 AP: Agree.
0:38:39.4 LM: What you said is they used to be on this pedestal, but really don't be intimidated, don't be afraid to ask. And if you need a second or third opinion, I believe it's important to follow through, trust your instincts, we know our body. Certainly they are the professionals, but we do know what's happening inside of us not only physically but emotionally.
0:39:02.9 AP: And as I told Dr. Slavin before, I've traveled around the US a lot with the movie, before COVID, of course, and a lot of geneticists and doctors have said to me, "Thank you. This movie has taken me out of the office, has taken me out of the lab." Because they are only human, and we all have good days and we all have bad days. So, it's understandable, yes, that you could walk in on a bad day where a doctor also has had something go wrong that particular day, but it felt very comforting to me that this film kind of brought them back to look at how patients are treated. So, yes, absolutely, Laurie, I agree.
0:39:53.7 DS: Yeah. And beyond your family, who did you both reach out to for support? Were you getting involved in support organizations, or did you just not wanna hear about anything else? What were you leaning on?
0:40:10.6 LM: I personally had an extraordinary experience. Again, I'd never been sick, and I was invited to attend at the time, again, 15 years ago, the Pancreatic Cancer Action Network was having a seminar. And I thought, "I don't wanna go to any support group, and I don't wanna be around a lot of people that are dying." It just sounded really dark and depressing to me, and that's not my personality or my outlook, even though I was diagnosed with something that could be. And after attending that and interacting with the physicians, with the scientists, with the volunteers, with the staff of PanCAN, my outlook completely changed. And so for 10 years, I was asked to be on the board of directors, I was chair of the board for several years, and learned so much about just the whole world of certainly pancreatic cancer, but what's needed in research and raising funding for medical research, reaching out to others, the advocacy, supporting not only in the health care professionals, all of you, the scientists, and the doctors, but the patients. It was just an incredibly powerful and enriching experience.
0:41:21.8 LM: And as a result, I now coach patients and really with the intuitive skills that I believe I possess, and the journey and walking with. Annie and I can both say that we have walked this walk of a cancer journey, navigating that I'm able to guide and help patients really empower themselves and to really live a quality of life. And I never imagined, 15 years ago, this would be my life now and what I'm doing, but it's... For me, PanCAN and some other groups have been incredibly empowering, educating, inspiring, and have equipped me with the tools that I need to help patients as well.
0:42:07.9 DS: Yeah. What do you do right now with PanCAN? And that's, I think, how I met you many years ago. I was trying to think about it, it was something related to PanCAN. But are you still pretty involved with them?
0:42:19.3 LM: Somewhat. Not being on the board has removed me somewhat, but I interact with a lot of the volunteers, and the staff, and the scientific and medical advisory board as well. I'm also involved with the... You may know Dr. Diane Simeone, who is involved with PanCAN, but is heading an initiative at NYU Langone Cancer Center for early detection for pancreatic cancer, and I'm on the board of precede, and that's a worldwide initiative for really protection. And all of that, it's empowering, it's enriching, and certainly with Myriad, learning about how you all are the gold standard of genetic testing and the importance of that, and demystifying what a genetic test is all about. Some people are fearful or they don't want the information, and how important this is, and one simple test can save a life for not only that person but generations to come is incredibly important, and I'm so happy to be involved.
0:43:32.3 DS: No, no, thank you. And on your website, I know you have a website, do you have your own foundation as well? We put the website in the chat, if people wanna go look at it.
0:43:43.5 LM: For Laurie, I don't have a foundation. Annie mentioned hers, and I'm happy to learn more about that. But, no, I have my coaching and I love participating in different opportunities to heighten the awareness about genetic testing and let people know that there is hope through a cancer therapy.
0:44:00.1 DS: And you have some risk questionnaire, as you said, on your website, too, where people, patients can interact all over. Yeah.
0:44:06.9 LM: Yes, absolutely, the simple hereditary cancer quiz that Myriad offers. It's three simple questions, and it's easy and fast, and I encourage everyone to take that.
0:44:16.4 DS: Yeah. Do you have other resources, too, patient resources on there?
0:44:21.2 LM: Yes, absolutely. If you search my name, lauriemaccaskill.com.
0:44:25.7 DS: Yeah, great. So, I encourage everyone to take a look there. And, Annie, when it came to your journey and leaning on people, you had so much cancer in your family at that time. How are you getting support?
0:44:43.3 AP: Well, I was the one that felt I owed a payback, and I actually... I'm very involved with force, which Myriad is too. I just couldn't get myself out there... This is long before the movie. Again, because of how I suffered mentally and physically, I just had to participate in anything that I could, like the Canadian Cancer Society being in Toronto. Any helpful... Any foundation that would have me that wanted to speak about my story about genetics, because it, as Laurie said and as you know, this is what you do for a living, Dr. Slavin. It's so important to be... It's a personal decision, I understand that, but it is certainly very important to... Look at Angelina Jolie, she's living a life now because of genetics, because of her mom. She can see her grand, hopefully her grandchildren grow up. And I just felt right from the get-go my life had an expiry date, and now that I know that I carry the BRCA gene, I can cross my T's, dot my I's, get early... I go every year, I'm still on three-time cancer survivor, so of course, yes, I still go for my annual check-ups. I just reached out to all the organizations that I could. My family literally fell apart with my mother's death because, yet again, as I said, nobody spoke about it. My first marriage fell apart because I was so obsessed with genetics and trying to find out why I carried this family curse.
0:46:34.0 DS: Yeah. And I wanna take a pause for a second and just see if anyone has any questions out there, 'cause we have a lot of listeners on. Anyone wanna ask Annie or Laurie anything in particular? If not, I have a million other questions, but we probably don't have time.
0:46:54.1 Shelley: I have one. This is Shelley again. Your desire to have information is very different from each other. Annie, you wanted a lot of information. Laurie, you were taking it more day-to-day. A lot of the individuals on this call are genetic counselors who thrive on doing active listening with patients but also providing information, and so there's that fine balance with giving too much information that you overwhelm the patient but yet giving them enough to feel empowered to make decisions that are right for them. And I wondered, in your different journeys and your different perspectives, how you handled too much or not enough with a provider? Did you just say, "Give me more, give me more," Annie? Or, Laurie, did you say, "No, I don't wanna hear that"? I know you've kind of touched upon that, but when we think about, from the provider, the doctor, the genetic counselor giving that, how did you manage that so it was right for you, if they were missing the clues?
0:48:03.8 AP: Laurie may be able to answer that better than me, Shelley, and I'll tell you why. Because, back then, I didn't go through all the protocol that you have to go through today. I never got to see a genetic counselor. I basically was told, "You have breast cancer at 29, you have to have a complete mastectomy." What was I supposed to do but listen to the experts, listen to the doctors? And absolutely that's... Don't get me wrong, doctors have saved my life many, many times, but even when I had third stage ovarian, my family doctor didn't put... Didn't connect the dots because, at that point, if it was a few years later, I would have seen maybe a genetic counselor. But there was no genetic counselors back then, and I used to go for all these symptoms that pointed directly now at ovarian cancer. But I didn't have anybody that I could tap into.
0:49:12.9 AP: I know genetic counselors are doing an amazing job today, and I value them and I thank them for the job that they're doing, but I didn't have that luxury. So it was complete hysterectomy. I didn't have any choice. "If you want to save your life, this is what you have to do." So I had that surgery done. And then my third cancer was 2005, which was a tumor that was behind my liver, so they had to take some of my liver out, too. But at that point, I knew I had a genetic disposition. And yet they said that my third cancer was actually an unknown primary, and my oncologist actually sent it to Dr. King. She wanted to see the pathology results, and it came back as an unknown primary, so it really wasn't connected, I don't think, to the breast and ovarian cancer. And that was in 2005. So, Laurie, over to you. I'm not sure... I don't mean to be evasive, Shelley, but I didn't have that luxury, unfortunately, that patients have today.
0:50:32.3 LM: And, Shelley, I was never offered genetic testing. It was never posed to me as, "This is something that you could do." And over the years, I might have done things differently. I do believe knowledge is power, and today I would definitely do testing. I believe in the counselors, in healthcare professionals. I think it's really important to manage and understand your patient. I realize there isn't a lot of time, but I hope patients will take someone with them. I hope they will ask questions and derive this information, because it is powerful and it can save a life.
0:51:16.9 LM: And it doesn't have to be overwhelming if it's presented in a way, and they go to a trustworthy company like Myriad, knowing that they have a lifetime commitment to their patients. They really do care, and it's accurate, it's safe, all of that is very comforting, I would want to know that. And that's gonna help me make the decisions. I'm not gonna do this alone, you do not have to think you are alone in making these decisions and navigate this journey. I think it's super, super important. Ask for help, and ask the questions, and learn, and do your homework. And for me, I am doing my research with where I would have this surgery or what oncologist or so forth. It was only so much, I couldn't overwhelm. You could spend the next 12 months every day, as you know, Annie, doing research, learning about this healthcare facility, this and this. It can be too much. So, I managed it. But again, I believe that asking those questions, getting the information, don't do this alone, knowledge is power and it can save a life.
0:52:23.7 DS: Yeah.
0:52:23.8 AP: And you know what, Laurie, it's so true. But I'm really gonna age myself and date myself here, but you can imagine how obsessed I was with researching this, I had to do it in a library. What's a library today? Nobody goes to a library anymore. It's all done, of course, online and, yes. Yeah.
0:52:47.0 DS: Even online is almost overwhelming now.
0:52:50.1 LM: Yes. It can be, you're right.
0:52:53.0 DS: Yeah. We only have a few minutes left, I don't know if there's other questions, people can chime in, but one general lasting question, what lessons learned? Is there any really good tidbit, or tidbits, that you would have personally loved to have known in the beginning, or advice that you would have for our provider audience here, maybe taking care of patients that maybe hasn't been said in the webinar yet?
0:53:25.9 AP: I think I've said it all. Again, empowerment, knowing your body, going and getting things checked out when you know things just aren't right, that will give you peace of mind, peace of mind that I never got initially, given the sign of the times or the way things were. So empowerment.
0:53:51.3 DS: Being an advocate, it sounds like.
0:53:53.6 AP: Being an advocate, absolutely, Dr. Slavin. Yeah, absolutely. Advocating for yourself. Look at Laurie, look at where she is today, 'cause that's what she did, so bravo to you.
0:54:04.6 DS: Yeah. What about... What say you, Laurie?
0:54:09.3 LM: I absolutely agree, because being dismissed and being told this is my imagination when I'm absolutely experiencing something, it is not. And I want people to really, just what you said, use your voice, trust your instincts. And for the health care professionals, really understand all of us have different personalities, and to better understand that patient, listen to understand and manage the information how it's conveyed. And I love when you talked about humor and just trying to treat this as, even if time is limited, really understanding what that means to that patient and how to manage that. And for the patient, again, knowledge is power. Take baby steps. This isn't gonna be solved or everything is not going to happen in a very, very short period of time. Manage that and know that there is hope. Just because my statistics were not good, Annie's were not good, why can't we be in that other smaller number where we are gonna survive, we can overcome this. It might be two steps forward, three steps back, but really think that, "I can do this, it is doable." And it's a chapter in your life, not the whole story.
0:55:34.8 AP: It's a journey. That's right. That's right.
0:55:36.6 DS: That's great. Well, I can't thank you both enough, to take time out of your busy days and come on, tell your story. Yeah, I know you've done it numerous times, but you still are helping people every single time you tell it. I hope that providers listening really took something personal out of today's webinar, and I can't thank you enough. I appreciate it.
0:56:03.7 LM: Thank you for what you're doing, Dr. Slavin.
0:56:05.2 DS: And I look forward to our paths crossing in the future.
0:56:05.4 AP: And, Laurie, let's stay in touch.
0:56:10.9 LM: I absolutely will.
0:56:12.6 AP: I'd love to reconnect.
0:56:12.9 LM: Thank you.
0:56:13.8 AP: Awesome. Thank you.
0:56:16.5 LM: Thank you, Shelley.
0:56:16.6 DS: And, yeah, so everyone definitely, Annie Parker Foundation, take a look at Laurie's website, which was posted in the chat. There's some resources there as well, and a little bit more background about her, PanCAN network, advocacy groups, many links throughout those. I appreciate everyone coming on. Thank you, and we will look forward to next week.