GOSH Podcast

Season 2 Episode 8: A New Gynecologic Cancer Survivorship Clinic in BC

February 07, 2022 Gynecologic Cancer Initiative Season 2 Episode 8
GOSH Podcast
Season 2 Episode 8: A New Gynecologic Cancer Survivorship Clinic in BC
Show Notes Transcript

On this episode of the GOSH Podcast, we are joined by gynecologic oncologist Dr. Lesa Dawson. She discusses the recent establishment of a hereditary cancer and gynecologic cancer survivorship clinic in BC. Dr. Dawson shares how a focus on early menopause management through hormone prescriptions, sexual health, and hereditary cancer has allowed them to improve the health and quality of life of many patients in BC.

If you have or had a gynecologic cancer diagnosis and this clinic is of interest to you, contact Nikki Burton at nichola.burton@vch.ca. You will need a referral from a doctor to participate in this clinic. Please note this is not a general menopause clinic since it focuses on early menopause management as a result of gynecologic cancer. 

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Introduction 

Thanks for listening to the GOSH podcast. 

Gosh stands for the Gynecological Oncology Sharing Hub, an open space for real and evidence based discussions on gynecological cancers. We'll share the stories of gynae cancer patients and survivors, and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynaecologic cancers. 

Our podcast is produced and recorded on a traditional unceded territories of the Musqueam, Squamish and Tsleil-Waututh Nation. 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 

Stephanie 

Welcome back to another episode of the GOSH podcast. Today we have a very exciting guest who is joining us to talk about survivorship and gynecological cancers. We have doctor Lisa Dawson who is a clinical associate professor at UBC and an associate professor at Memorial University in Saint Johns Newfoundland. 

As a gynecological oncologist with over 2 decades of experience in cancer care, Dr Dawson brings her expertise to a practice focused on inherited cancer screening and prevention. She leads the newly launched hereditary cancer survivorship clinic at Vancouver General Hospital and runs the Inherited Cancer Prevention Clinic in Saint Johns, Newfoundland. Both clinics are dedicated to the preventative care and quality of life needs of patients with hereditary cancer predispositions. 

She was trained in gynecology, oncology, clinical epidemiology and cancer genetic risk assessment and her research interests include genomics and public health, management of early menopause, hereditary cancer, prevention and survivorship so welcome to the podcast Doctor Dawson. 

Lesa 

Thank you Stephanie. 

Nicole 

Alright, so to kick us off and break a little ice, we're trying something different in season 2 here. 

We're doing a a series of rapid fire questions that we're just going to give you Doctor Dawson. 

Short, sweet and fun just to get us started. 

Are you ready? 

Lesa 

I'm ready. 

Nicole 

Alright, So what is your favorite meal of the day, breakfast, lunch or dinner? 

Lesa 

Hands down breakfast really 

Nicole 

What's your go to? 

Lesa 

Uh oatmeal, maybe a hard boiled egg.  

Not a breadfan. 

Nicole 

Keep it simple.  

If you could have any superpower, what would it be? 

Lesa 

Oh, that's easy healing. 

Nicole 

That's a good one. 

Then what's the best piece of advice you've ever been given? 

Lesa 

Oh, don't worry about what other people you wouldn't worry so much about what other people think of you if you knew how rarely they did. 

Nicole 

Yeah, that's important. That's good. 

All right, OK, that's our little bit of fun for today. 

Moving into the important stuff. So as a gynecological oncologist and researcher, why do you think survivorship is so important? 

Lesa 

I believe that you know. As cancer care has evolved and we've come to know more about cancer. Over those years, we were really focused on treatment and which chemotherapy regimen or what radiation fields or all that. But now we've come to a point where as treatments get better and better, women are living longer. Their cure rates are better. And because cancer unfortunately, is such a common problem, you have a lot of women walking around who have had a cancer in their lifetime or have been affected by cancer diagnosis in their family. 

And so you know, there comes a point when you can put the treatment part in the rearview mirror and look forward but you're never going to quite look at the world the same, and you're always going to have those same always going to have issues that remind you every day that you had a cancer. And the the trick is to live your life to the fullest and keep that in the rearview mirror, and be as healthy as possible. 

Stephanie 

Yeah, I think that's so important. Nicole, I'm sure you have thoughts on on what Lesa just said. 

Nicole 

I think you know for me, like going through the treatment was not easy, but you know there was a schedule. There was something to focus on. There was an end goal, right? So I wasn't prepared or didn't anticipate what life after treatment would be like. And that is where I feel like it got really tough and as over the years you know, gone up and down. 

But you know, ebbs and flows with it's a bit easier you're focused, you're positive then somebody just got pregnant again and I still can't have kids. So you know it just kind of hits you and it all these different ideas or plans you had for your life that are now shifted because of that cancer. 

Yeah, it's uh, it's hard. 

Lesa 

Yeah, I often tell you you're really right Nicole and I often tell people to get ready for a crash because what happens is when you're first diagnosed, you're almost like a expression is you're like a deer in the headlights. 

You know, you just do whatever you're told you. Follow whatever protocols you do, what you're told, and then you get through it. And when you're finished it people say, oh God this is so great, you're done. But you're not done, and then very often women have a crash after that's partly physical, partly emotional, that they just sort of feel traumatized. And they say what just happened to me and process it. 

Nicole 

That makes me feel really good. 

I think I went about a year where I kind of had this bit of a high and I I joined the over care team did the ride to conquer was like, you know I'm I'm not going to let this get me down I'm going to be positive, I want to participate in different ways. 

And then it all just kind of hit me really, really hard and my hormones weren't being managed and we're going to talk about more about that, but it really just everything kind of like you said it was a crash for sure, yeah? 

Lesa 

The crash, yeah, and we almost now in our clinic now we tell women there will be. 

And we also tell women, you know, understand that it's going to take you every day of two years to get your stamina and your energy back even close to what you want it to be. 

Stephanie 

Umm yeah, that's so important. 

Well, the both of you just eluded to my next question, and the main reason as to why we wanted to chat with you today Lesa and that is the new hereditary cancer survivorship clinic that you're leading alongside a couple others, including Doctor Janice Kwan. 

You know this is such an interesting new clinic that has been sparked just very recently, so can you tell us a little bit more about the clinic? What sparked the creation? What services are offered? Tell us all the details about this new service that you're providing to patients in BC? 

Lesa 

Oh, thank you. 

It's a great story and I'm really proud to tell it so this is really the brainchild of Doctor Janice Kwan. 

She, like many of us oncologists, could see that there was a gap in care for those women that had either had a preventative surgery, perhaps which we can talk about preventative surgery that made them menopausal younger than their natural menopause, age or perhaps women that had already had a gynecological cancer and their treatment had made them menopausal. And there was a real gap in terms of managing their early menopause and their hormones and what women were telling us and family doctors everyone was telling us is that the family doctors for the most part didn't really feel comfortable managing these ladies because hormone menopause is very complicated. 

It's a whole topic that's fraught and been mired in a lot of bad knowledge translation over the years and especially the management of young women, there's a lot of misconceptions, and it's very, very difficult for even the very best family doctor to possibly stay on top of that research, because it's there's so much. 

And in addition, what we were hearing for women is that they were really struggling with even getting access to care or getting good advice so Dr. Kwan saw that gap. 

And then as it came to play out, she and I had been colleagues since probably almost 25 years now and did our training at the same time and got talking. And I'd run a similar clinic in Saint Johns, and so when I'd moved to Vancouver, we launched it here and we were really lucky to have the support of the gynecology division through Vancouver General and warehoused officially in the Diamond Center. 

But in fact it's a virtual clinic. Umm and so, so that's sort of the how the brainchild of it began. 

In essence, we have, you know, three key points. So three kinds of women recounted issues or reasons that we launched. 

One was the management of women like I've said, with premature menopause who were not really getting their needs met. Number two was helping those women who may have had gynecological cancer who were trying to manage other sequelae or those women who knew they were at high risk and were trying to make decisions about surgery because you can imagine those are big choices and the third part which is really underlines the whole thing is research because we know that Women's Health is very often underfunded. Women’s Care is very often under researched and we knew that there were a lot of gaps, so we felt that by building the service we could also, in parallel, build the research program and Dr Kwan is a terrific researcher, and she had a really clear vision along Dr Gillian Hanley about how we could properly study what hormones to give young women, why they're important, what the long term effects of it would be at a population level. 

So it's a the the research is quite ambitious actually and I'm very proud to be part of it. 

Stephanie 

Yeah, I think that's so that that's such an amazing you know vision and you know outcome that has come from all of the observations that you and your colleagues have made over the years treating these women and you know, Nicole and I have had conversations about hormone replacement therapy and kind of the journey of that. Yeah, I'm also, Lesa can you just click confirm with us, like who can access this clinic and and kind of what? What do you do with these patients. And how do you kind of? What are some of those key concerns that are dealt with? 

Lesa 

Right, right. 

So since we launched in March, we've had eight nearly 80 women referred, which far exceeds even our wildest dreams in terms of the volumes of women, they're very young. The average age is early 40, 42 I think 41 so they're very young women. Most of them have had an early menopause. And so the large share of our conversations are rooted firmly in helping them get their hormone recipes straight, trying to settle their fears about all these old misconceptions about hormone replacement. Explaining to them that this is not your mother menopause. This is not your mom who went through menopause at 52 and had complained of flashes. This is a different story and none of that other stuff you read in reader's digest or Chatelaine really applies to you. 

So for most women who are going to be starting a new hormone regimen or beginning after surgery or treatment. Usually it will take three or four times adjusting before you hit the right recipe, and you get the jackpot and what we're after is really good control of hot flashes in the daytime and much improved sleep. And there are ways that you can give the hormones that really help with sleep and and then getting that tweaking properly, which can be the way that hormones are delivered or the way that the progesterone or the estrogen is given and dosed is really critical. But very often we may see somebody monthly for three or four months until we get the right way. 

So so menopause management I would say would be #1 #2. We talked a lot about sex. We talk a lot about the trauma that people have been through. So like I said earlier, I mean this is a very traumatic experience to have been blindsided by a cancer diagnosis as a young woman and many women, I think sort of kind of like what Nicole said in the beginning is you just say, OK, that's it I'm not going to let this get me down I'm going to push through and you know you almost do need to take a beat and say wow, I just had something really difficult to happen. 

So fear of recurrence management of fatigue we spend a lot of time on and then for women that are in a hereditary family, like those ladies with BRCA. For example, BRCA genetic predisposition we there's often a lot of questions about how to talk to family members, maybe how to talk to their daughters, when they grow up, how to talk to their sisters? Whole litany of things, but our primary focus that we appear on probably spend most of the time on his menopause. 

Stephanie 

I want to hone in on that menopause bit a little bit more and talk a little bit about the hormone replacement therapy Lesa, and maybe offer an opportunity for Nicole to share a little bit about her her journey. 

Uhm, what is so difficult about menopause? What are some of those like pre? You know myths that a lot of people in the general public are, you know, are believing and what what is the what is the right knowledge that you know patients and women in the public should know about in regards to hormone replacement and early menopause. 

Lesa 

Well, I think. That's a loaded topic, but you know what? I think the first sort of, and I don't mean to sound flip for a second, but the first thing I often say the patients is look you know hormones are not poison. You know people have all these misconceptions. 

So the first thing I think really is to understand what a natural menopause would be. So naturally, a woman. Will have, you know, changes in her periods. Intermittent cycles will start to have maybe heavier periods. Maybe skip a period, then have start having some hot flashes or night sweats. And then over a period of several years, her periods will stop. Those symptoms will carry on and eventually it all does settle. But it takes several years. 

So menopause is not a switch. It's not like you wake up one morning at 52, which is the average age in Canada and say boom I’m menopausal. It's not like that. For those women, that's one group of people. 

For women that have been had a cancer treatment or had a ovary removal, they don't have that dream that gradual period. They have what we call an acute menopause. And so the symptoms of not only would you period stop, but the what we call vasomotor symptoms, which will the old fashioned term would be hot flashes or waking up many times at night with lots of sleep disturbances and hot and night sweats. Those things are really a major quality of life factor for women and we all know. We all know you have to sleep if you're going to be functioning and your mood will be stable and your memory is going to be good and you know you're you're going to function at your best capacity and need good sleep, and we know that vasomotor symptoms wake women up many, many, many times per night, so it's not just feeling hot and sweaty in the daytime, it's a deeper issue with really disrupted sleep, and so for those, I'll say girls, but those young women who go through this. It's a very acute menopause and it can be a bit more dramatic than it would be for somebody who went through menopause naturally, at age 52. So that's the first part. 

The next part would be about the hormone piece so about 20 years ago there was a study called the Women's Health Initiative, which was a large study of women who had gone through menopause. Naturally, the average age of women entering that study was in their 60s, and there's been a lot of written and published about it. And it's not, you know, not the time to get into it. But in essence, there were concerns at that point that there may be a small trend higher rate of breast cancer. The increased relative increase was very modest, but there were significant advantages in terms of people bone density and quality of life. So women felt much better their bones were much safer, but there was a little blip in the breast cancer risk and everybody freaked out. 

And and so that all got mixed up with people perception of menopause. And so the women who were in that study were 63 and that research has nothing to do with a woman who's been made menopausal at 37 or 40 in fact, a woman who's been made menopausal at 37 or 40 has dramatically reduced her breast cancer risk, and we don't have any evidence that giving back her the hormones that her body is supposed to have will do anything to her breast cancer risks. What we do know is that her quality of life will improve dramatically. She will protect her bones because your bones do start to get a bit thinner as you go through menopause and you don't want that to start too soon and that in the long term there are actually benefits to her heart and her cognition ff she replaces her menopause, her hormones at least to the age when she would have been menopausal naturally and then she's like everybody else she can decide what she wants to do then. 

Nicole 

It's um that whole cognition piece the memory, the sleep. I think I had a very stereotypical idea of like what it would mean to go into menopause like I'd have hot flashes and I'd be cranky. That is really the essence of what I thought it was and and so I really didn't. I couldn't figure out why I was so challenged why my sleep was so bad. I couldn't remember anything at work and felt like I was always in the fog and I was just getting so frustrated with myself. You know, and feeling like. Like I just. Like not as worthy or capable, as I I once was 'cause you know then starting to think you know is this depression or what am I going through? And it was really challenging to figure out that this was partially because the hormones I was on wasn't even enough. And I had that fear for sure that you know there's a lot of them in my family have breast breast cancer. So if I take more home hormones, is that going to increase my risk and it was really misinformed but didn't really have too many places to go get that information, because like I said, it's mainly for women who are not really going in there, so most of the resources I found just didn't really help me out and then didn't have that that support from my family Doctor who was very open and just said I can't manage this, so it was such a huge challenge to figure out what do I do next and how do I find those resources so it makes me like really emotional to hear you talk about what you're doing with the clinic and that women are getting access to this because I just I think it's so so needed and so important, and the other things that come even you know with changes in after the radiation going into menopause, just sexually with your vaginal tissues thinning and you know things that didn't happen before that now happen that are embarrassing or frustrating. Or, you know, really hard to manage and and that what you spoke about the trauma? It's so so real, and I've never really thought about it in that sense, but you're right, that's exactly you know it it is an essence of trauma that have gone through the change is really hard to kind of grasp and understand it kind of comes in bit by bit, and because you're just kind of learning as you go up, so I'm I'm really happy to hear that you've got this clinic up and running and and that there are more supports for women. It's amazing. Thank you for for this work. 

Lesa 

Well, thank you for spreading the word and telling your story. You know not everybody is ready to do that, and it really matters when you say things like vaginal changes 'cause many women won't even say the word right. 

Nicole 

Yeah, well it's it's taken me a while to get there and I I I've downplayed that piece of it, but um sexual health has been a like a night and day change for me like from what I was before and it's been really hard to overcome and not just on those things that we talked about, but your body is just different you know I had a trachelectomy so things are they don't feel the same and so you know it's a it's a real challenge, you know you kind of lose that sexuality that that feeling that you had before, and then you know, having to overcome that with with a partner, it's yeah it's it's not I'm getting better and talking about it, but it's definitely not not easy. 

Uhm, do you see any opportunities for more clinics being offered throughout Canada like this? Or something that you know even your own clinic could be expanded to to support more women? 

Lesa 

Well, Dr Kwan and I talk about that all the time. So in essence this clinic was really started as a as a very kind of baby, gentle pilot and we because we didn't know what we didn't know where the demand. We thought there was a big demand. But we didn't know now we're finding that so we're in the midst of applying for funding to to continue and and to build on it. 

So we were very lucky that we were very, very fortunate to get some support from the Diamond Foundation to get us rolling along with the grant that Doctor Kwan had received from the University of British Columbia from the division of gynecology. So that's kind of what got us started and we're in the midst now, applying for other funds, and we've been supported by Gynecological Cancer initiative tremendously, so stay tuned, but for certain at present there's myself and a lovely very experienced cardiology nurse called Susan Keist who has worked in clinical trials and bonding oncology for years. And we have a wonderful admin called Nikki Burton who like me and from New Foundland and so right now it's the three of us with Doctor Kwan. But we have high hopes to expand and see more women in terms of your question about reach across Canada so. So you know my clinics are the bookends, but there are some really excellent practitioners across the country. There's a lovely clinic very similar at Women's College in Toronto. There's an excellent clinic in Winnipeg. I don't know the guys in Alberta as well, but I understand there's a couple that are very skilled for certain what I can say is that we have a network now of actually, all female physicians who are very interested in this topic and our dream is to build a collaborative community of people caring for young women with early menopause. 

Nicole 

That is so important. The women that are in the clinic. What stage of their journey are they in like? Did they come after they've finished their treatment, and that's an opportunity, or are they coming to you later on where they've struggled to find management for, say, their met their menopause and they can get access to your clinic later on in their journey? 

Lesa 

Yes, both. 

I think most of them are fairly for the ladies with BRCA or Lynch syndrome, which are hereditary predisposition, we know that there is no proven screening test for bearing cancer and then variably depending on what the hereditary predisposition is, there's a recommendation for them to have their ovaries and tubes or perhaps those nearest removed so quite a few of the hereditary ladies are coming fresh out of surgery. 

We have some that have maybe been on the go for several years and really struggled and found their way to us. The word of the clinic hits some of the support groups and so we have quite a nice trickle of people coming because they heard about it on say, a BRCA support group. And funnily enough we have a bunch of sister pairs who were East Coast and West Coast who found one found us and then the other found us. So it's come from all corners really. 

Nicole 

That's amazing. 

Stephanie 

Yeah, that that is so amazing to hear the reach and clearly such a big need for this clinic but you know, you're running and others across across Canada. 

Lesa, I'm curious what what is your vision of all of this. 

Like if you had all the money in the world to dedicate towards this survivorship clinic, what what would it look like and what would you want? Uhm, what is your vision in this? 

Lesa 

What we what I would love to see and I think I think it's very doable I don't think it's a you know, high in the sky vision. I think what we need is a a multidisciplinary team and so you need a solid base of clinicians, doctors and nurses with expertise in menopause and gynecological cancer. We for sure need expertise in genetics. 

But then you need more than that because the whole purpose of survivorship and prevention is that it's patient centered, and it's holistic. So this is different than treating a cancer. We're not treating the cancer anymore. We're treating the person. And so that means that you're going to need, depending on the woman, you may need some more psychology support or counseling. You may need more sexual therapy or sexual health support. You may need more genetic support. You may need somebody to help them with finances and how to navigate all the costs of all these prescriptions. 

You know there's a there's a lot of different factors, so it wouldn't ever be just the doctor centric clinic. I the way I would envision is the patient is at the center and all of us are around to serve her. And and so ideally I would see us, you know, if we were just here in BC, I think we would end up needing maybe 2 1/2 doctors and maybe an equivalent number of nurses. We would need research staff and then the big dream of course is that if we can generate the research to prove how important it is for these young women. To get their hormones and prove the benefit for them in terms of their cardiovascular health and their bone health and their quality of life and their longevity. That research staff would really make the difference if we can get those publications out there, because you know in BC we have the ability to do these kind of things very well. 

Nicole 

There's also that opportunity of community building knowledge translation. You know creating a space, whether it's support groups or peer to peer type support, or you know, just offering you know an additional step that's more community based to that mental health piece, which I think is always really important as well. 

From your experience so far, and in your practice in general you know there are important lessons that you would want other gynecological cancer patients or survivors to know about their own cancer survivorship? 

Lesa 

So you mean speaking specifically to somebody who's already had a cancer? 

Yeah, I'd say cut yourself some slack. Acknowledge that what we've been through is, like we said already, a huge trauma. Don't try to bounce back to to where you were, not to say you you're not even better than you were and stronger than you were, but it is different and you know to be frustrated. I see a lot of women who are frustrated that they're not exactly this doing all the things they were before, and that frustration is even more depressing. 

And so I think cut yourself some some slack. Take the bloody hormones. You will feel better. There's only a very small subset of women who've had a cancer for whom we would not recommend hormone replacement. There be certain you know breast cancers of different conversation, but for gynecological cancer there really aren't very many that we would not and and then I guess the third thing I would say is the importance of vaginal estrogen so not only do systemic and it's important to distinguish the systemic estrogens will help your brain and your heart and your bones and your hot flashes and your vagina to a degree. But remember that the vagina and the bladder have a lot of receptors for estrogen. And those tissues are much happier and much healthier with lots of estrogen around them. And so even if you're taking systemic estrogen, you need for general estrogen too. 

Nicole 

Right, that is good to know. 

I gotta add that. 

Lesa 

Yes you do. 

Stephanie 

Lesa, the very last question that we have for you is you know if we have listeners who are listening to this episode and want to learn more about the survivorship clinic, you know, is there a place where they can reach out to to find out more about how they can access this type of service? You know, where can people go to find more about what you're doing. 

Lesa 

Yeah, so the contact Nikki Burton our admin so she's nichola.burton@vch.ca and her phone numbers at the Diamond Center in the division of an gyne oncology, so it's I think the extension is 20153. 

Check it out though before we quote it. But I think it would be important to say that this is focused on gynecological cancer focused on early menopause, so this is not a regular menopause clinic. 

Stephanie 

So people can. If someone with a gyne cancer is interested and feels that they would benefit from accessing your clinic, you know anyone can kind of reach out and then see if it would be an appropriate service that they can access for their health care. 

Lesa 

Yeah, and they would need a referral from their doctor from any doctor and we would be able to tell them. You know there will. Be some women that. There are other clinics that are perhaps a better match, but we'd be able to advise them. But certainly for somebody who's struggling with with early menopause and hormones, we'd be happy to help. 

Stephanie 

Perfect. OK, so we will make sure to put that information in our show notes so if any of you listeners are interested and feel that you would benefit from this sort of service. Please do inquire about it and see if it would be something that you would benefit from, or if there are other services that would be more appropriate for you. 

Uhm, OK. Thank you so much Lesa. That was you know, such a pleasure. Is there anything else that we might not have covered that you want to also include in this episode? 

Lesa 

I think you guys have done a terrific job. I guess maybe I would just throw out a little comment that for people that are worried about their family history of cancer that it is really, really important to know that ovarian cancer in particular has a strong hereditary component. And so that as many as 20% of women who have ovarian cancer will in fact be found a hereditary predisposition, so that if there's somebody in your family who's had an ovarian cancer, it would be really important to have us have a look at your family history and consider access to genetic testing. You'd want to find out if you have a change in a gene in genes like BRCA1 or BRCA2. 

Stephanie 

OK, well thank you so much for coming on the GOSH podcast Lesa, this is such important work that you're doing and we're really excited to amplify and share this with our listeners, and hopefully we can have you on again, you know, once we make more strides in the research and you can share some of that work with us to our listeners as you continue building this amazing resource that you're building. 

Lesa 

Great, can't wait. 

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 gynecancerinitiative.ca.