Season 3 Episode 5: Tools and Resources around Sexual Health at Gynecologic Cancer Survivorship Phase

In today's episode, we welcome Dr. Melanie Altas. Melanie talked about the struggles gyne cancer survivors face with sexual health. She also outlined useful resources and tools around sexual health available for patients as well as for healthcare providers.

Originally from the Maritimes, Dr. Melanie Altas finished her residency in Obstetrics & Gynaecology at UBC in 2007. Currently, Dr. Altas is a Director of BC Centre for Vulvar Health and a Clinical Associate Professor at the UBC in the Department of ObGyn. Her current clinical practice is dedicated to cancer survivorship, menopause, and sexual pain disorders. She is committed to empowering women with education and tools to heal themselves and is a passionate advocate for patient collaboration and shared decision-making.
 
Links: 

Cancer & Sexual Health Clinic 

https://bcvulvarhealth.ca/cancer-sexualhealth/ 

BC Centre for Vulvar Health: 

https://bcvulvarhealth.ca/about/people/  

Hello Vulva! Instagram page: 

https://www.instagram.com/hello.vulva/?hl=en 

Dr. Lori Brotto GOSH podcast episode: 

https://www.buzzsprout.com/1387837/episodes/8056177  

Dr. Lori Brotto’s book: 

https://www.loribrotto.com/  

OHNUT- wearable tool to adjust the depth of the penetration during sexual intercourse: 

https://ohnut.co/ 

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For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca 

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For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca 

Where to learn more about us:  
Twitter – @GCI_Cluster 
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Transcript

SPEAKERS 

Almira, Melanie 

SUMMARY KEYWORDS 

Sexual health, sexuality, cancer patient, survivorship, cancer survivor, gynecological cancers, oncology, British Columbia, podcast, cancer treatment, chemotherapy, side effects, mental health, support, fertility, cancer advocacy, awareness, cancer patient journey, resources 

00:00:01 Introduction 

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 the lives of people with gynecologic cancers. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers. 

Hi! I’m Almira Zhantuyakova! I do behind the scenes work for the GOSH podcast. Today I will take over Stephanie and Nicole’s place as a host. And you are listening to the GOSH podcast! 

00:01:01 Almira 

Welcome back everyone to the GOSH Podcast! In today's episode we welcome Doctor Melanie Altas. She is originally from the Maritimes, Dr. Melanie Altas finished residency in Obstetrics & Gynaecology at UBC in 2007. Currently, Dr. Altas is a Director BC Centre for Vulvar Health and a Clinical Associate Professor at the UBC in the Department of ObGyn. Her current clinical practice is dedicated to cancer survivorship, menopause, and sexual pain disorders. She is committed to empowering women with education and tools to heal themselves and is a passionate advocate for patient collaboration and shared decision making.   

Thanks Dr. Altas for joining us today. We are really excited to have you. 

00:01:53 Melanie 

Thank you for inviting me. Yeah, I'm really looking forward to our conversation today. 

00:01:59 Almira 

Why don't we start off with just you telling a little bit about your clinical research and advocacy work? 

00:02:08 Melanie 

Certainly yeah! So, as you mentioned, I'm a gynecologist and the director of a center called the BC Center for Vulvar Health. And this is a multidisciplinary center which is based in Vancouver Coastal Health. We provide individualized and self-directed care for people with chronic vulvar conditions. So, we explore healing not only through physical aspect, but also through an emotional and sexual lens. 

So, alongside the work that I do in this center I also run a sexual health and menopause clinic for cancer survivors, and I think that's what we're going to focus on today. But so that's what I have right now, but I actually didn't start out here. 

So, my journey to where I am right now kind of followed a really meandering pathway. So, I actually started out working as a community gynecologist and did so for 13 years before I moved full time to Vancouver Coastal Health. In the community I really realized that there's this population of people with vulvovaginal concerns, people with sexual health concerns after cancer and people with complicated menopausal issues were really under service. So, I was drawn initially through self-education just to learn how to better this population. Then I did hands on mentorship with gynecologists that worked at the Center for Vulvar Health. I also did specialty training in sexual medicine as well as menopause and that's kind of what's drawn me here. 

So, I have a really interesting perspective from being at a tertiary care academic center, but also from spending so much time in the community. And it's through those two journeys that I've become a really passionate advocate for increasing public awareness as well as improving access to services within the community and supporting community care providers. 

00:04:26 Almira 

Well, that's awesome. 

Considering all those experiences you have, what kind of sexual concerns and difficulties do women face during their gynecological cancer journey? 

00:04:38 Melanie 

Huh, so we know from a lot of research that sexual health is actually one of the top concerns. Usually, in the top two or three concerns for women following cancer. And it's usually something I see not so much during the acute diagnosis, but as they settle into their treatment and certainly beyond the cancer, cancer care is the time where I kind of come into play. So, we know also that sexual health is a really important element to having a great quality of life. And we also know that it's really, really complicated. 

Before diving into all the specifics, I do really think it's important to emphasize that sexual health it's not necessarily something we see in a partnered relationship. So, it's also something that can impact those people who are single or dating. So, amongst the complexity of sexual health, so the desire or the arousal, the sexual self-esteem. There are lots of different areas where we can find interruptions to sexual health and what I'll do is touch on the most common ones that I see. I find it really helpful to divide it into physical concerns as well as emotional and sexual concerns. 

So, we'll start off with the physical things that can impact sexual health. Many women who are going through cancer treatment will experience menopause if they're already not in menopause. This can be either due to surgery to chemotherapy to radiation or even some of the adjuvant hormonal medication that we use like tamoxifen and aromatize inhibitors. Along with the sort of iatrogenic menopause it brings with it all of those typical side effects that we hear about such as dryness of the vulva and the vagina which can cause sexual pain, hot flushes, which can overall impact quality of life, but also can impact sleep and we know that sleep has an important role in sexual desire. So, one of the most common things that I see in my clinic is to manage the sexual pain that people experience as a side effect of the vulvovaginal dryness or what we call atrophy. 

So, also people can have sexual pain related to radiation, so particularly with cervical cancer, those patients will have vaginal or internal radiation, and that can cause some scarring, some additions and shortening of the vagina. As well as women who have surgery like let's say for uterine or ovarian cancer, they may have scarring at the top of the vaginal vault door or shortening. As you can imagine that would physically impact insertional intercourse. 

Then there's the kind of what I feel is the more underrecognized impact on sexual health, the emotional or the psychosexual aspect. So, a lot of feelings that I hear come up around cancer treatment are words like grief, anger, frustration, uncertainty, even that there's always that lingering uncertainty about recurrences. Many people feel that their body has failed them. Some people feel that their body is broken and all of those things you can imagine can impact sexual self-esteem, their sexual self-image, their relationship with their partner. You know cancer treatment it's very intense. It's long, it's very invasive. Tere are many women with pelvic cancers who will feel that this part of their body that was previously pleasurable it's been medicalized. And so, there's that process of reconnecting and finding that pleasure in the vulva, the vagina, the clitoris, after many weeks or months of medicalization. We'll see people who have changes to the sensation of the vulva and the vagina, particularly with menopause or radiation. They may have changes to arousal. Changes to desire. 

Lastly, there are women where there's a lot of grief around a loss of potential fertility for those women who desired that and were not able to achieve that prior to cancer. So, there are so many places in the sexual response cycle where somewhere cancer and its treatment can cause interruptions. 

00:09:58 Almira 

Definitely. We all probably think about physical interruptions that happen. But as you mentioned just now, so many emotional traumas and emotional hurdles involved in the cancer journey. You just mentioned a little bit about cervical cancer and how surgery can impact sexual life. Do this concerns differ across different gynecological [cancer] types? 

00:10:30 Melanie 

So, there's menopause. Premature menopause or induced menopause would be very similar across all of the gynecological cancers. The ones that kind of jump out at me as being slightly different would be the internal radiation for cervical cancer and then also the vulvar cancer would be quite unique as well, because vulvar cancer, the treatment for that involves surgery. It usually involves an external radiation. And those can cause changes to the anatomy of the vulva which you can see how that would directly affect self-image self-esteem. If there is changes in cosmetics or some people, consider it a disfigurement.  

Yeah. I would say those would be the unique ones. 

00:11:33 Almira 

And is there anything that patients can do on their own to improve their sexual health caused by the cancer treatment. Shall it be physical and emotional? 

00:11:50 Melanie 

Uh, yeah, you know. All of those are very unique and there are many ways that patients can advocate for themselves, but certainly some things that come to mind are... I think in your Season 1 you did a really lovely podcast with Doctor Lori Brotto on using mindfulness for sexual concerns and that's something that I also will incorporate quite a bit. I would recommend Doctor Brotto’s book on mindfulness for improving desire. Also, I understand she is in the process of developing online modules that incorporate mindfulness as well as a type of therapy called cognitive behavioral therapy, so those will be come online and available. 

The other thing that I think is also underused that I see a lot with my cervical cancer patients is something called the OHNUT. So, it's O-H-N-U-T and it changes the depth of penetration in penile and vaginal intercourse. So, it's a set of very soft, pliable, stretchy rings that go on the base of the penis. You can use one ring, or if they come up to four rings. Basically what it does is changes the depth that the penis is being inserted into the vagina. So, this is really helpful and can be really life changing for people who have, UM, scarring from radiation who have some shortening of the vagina from radiation or surgery. So for the partner with the penis, it feels the same, but these rings on the base of the penis prevent that part of the penis from going into the vagina, so that's a common tool that I talk about with all of my cervical cancer patients. 

00:14:06 Almira 

Perfect. About the book, we will definitely attach in our description link to it, and once the resource is available, we will also attach that as well. 

00:14:19 Melanie 

Yeah, and I would refer people to the podcast you guys did with Dr. Brotto is really lots of helpful tips. 

00:14:28 Almira 

Yeah. 

In general, cancer survivors and their health care providers might be reluctant sometimes to discuss their sexual concerns. Especially if maybe the provider is not really aware about all like the sexual aspects of the cancer survivorships. For healthcare providers, what do you suggest to ensure that patients are comfortable talking about sexual concerns? 

00:15:06 Melanie 

So, this is really shifting to become more of a priority in cancer survivorship. So, we're seeing this shifting culture. Or basically I would say a growing culture so that we're not just focusing on treating the cancer and then getting to remission and monitoring for recurrence. 

So, we're growing to encompass all of the long-term impacts of cancer in the treatment on quality of life, and amongst that sexual health is very important. So, it is going to be important that health care providers are aware of this and are able to at least discuss this with the patient. So that's kind of the first recommendation for health care providers to really step back and to recognize that broad impact on the individual, on their family unit or their support system. Also really recognizing this even if someone is not partnered. So, because someone is single it's not assuming that sexual health isn't important to them. 

So, one thing that health care providers can do is to create what I would call a sex friendly environment so within their office to have maybe posters to gather some pamphlets too. Uhm, have books maybe in their waiting room or like I have a bookshelf in my office where I've probably 20 or 30 books on sex and vulvas. So that's the first step. So, create this environment that that patients feel that you know if they brought it up, you'd be open to it. Because that's a really hard thing for people to do. People have trouble talking about sex when it's not working well with their partner with their friends with family members. 

So, to talk to a stranger is very intimate meeting. I would encourage physicians to incorporate asking about sexual health or menopause into their regular cancer survivorship management. 

One thing that you can say is “you know, it's common for cancer to impact sexuality. Is this something that you'd like to discuss?”. So, sort of opening that door and then you know to depending on the response and recognizing that visits are limited, you can set up another time, so another visit to explore further. 

Or if the physician may recognize their own knowledge or interest limits and, in that case, they should at least have the resources to refer a patient to. And so, then that's kind of knowing a bit more about what are the local resources that are available. 

And we're really lucky in Vancouver and British Columbia to have a lot of those resources: sex therapists, psychologists, counselors, physiotherapists. We really do have a lot of resources and recognizing though that for many people those, unfortunately, are not covered by extended medical, but if they are, I'd encourage people to take advantage. 

00:18:35 Almira 

Huh, I think that's very useful. And what about for patients? What advice do you give to patients to empower them to have this conversation? 

00:18:51 Melanie 

Yeah, so I think the very first thing is for those individuals to recognize that they are not alone. 

So, they are not the only person experiencing this. There are so many people with exactly the same story and concerns that they have. To also recognize that those concerns are valid and that they're important. I'll see some people who feel that they should just be grateful that their cancer is cured and that they survived. And that everything else is kind of icing on the top. That's not true at all, so their concerns are valid. 

Then actually within when deciding to bring up their concerns with a health care provider, I really recommend that people prepare for their appointments. So, to keep in mind that appointments with family doctors are short. They're not going to be able to come in and address you know 10 issues. So, to have a focus of that appointment that you wanted to. Ask about sexual health and write down one or maybe two points that you really want to get across in that meeting with your family doctor. Also know what your ask is, so, what's your goal of bringing those up? What resources do you want? Do you need validation? Then also I think it's important to either prepare a little bit for what, what if you encounter or response, or a situation where you're dismissed? Or what if you're not believed? What are you going to do in that scenario? Are you going to come ask, continue with that physician? Are you going to find a different way of expressing your concern? or do you feel it's time to maybe find a different provider that will come that is able to address your concerns or? Do you ask for a referral to a gynecologist or a women's health specific physician? 

00:21:06 Almira 

OK, that's a really, really nice advice. I think you gave very specific sort of step points that patients could do. That's amazing and useful! How can we, in your opinion, improve awareness about sexual health in gynae cancer survivorship phase? 

00:21:26 Melanie 

Huh, so I think this is really and I think there's a lot of things that we can do, and one of them is kind of what we're doing today. This is a really good starting point is to just talk about it to normalize. Having these conversations, having these difficult conversations and to talk about something we're not used to talking about like sex and vulvas and vaginas and penises. So, this podcast, I think, is great. You know, we're so lucky with social media now that there's a lot of downsides, but it really is a great way to disseminate this type of information and I know there's a lot of social media campaigns that are out there right now doing exactly that. Then I think another thing that's really important is the education of health care providers and so making sure that gynecologists, family, doctors, oncologists are really well trained in assessing and asking about sexual health. 

And one of the things that we've done at my center, the Center for Vulvar Health, is to implement a mandatory one-month rotation for our third year OB GYN residents. And as to our knowledge, this is the only mandatory rotation in this area from any of the OB GYN residencies that we know of. So, it's quite unique but very important. So, this month is a focus on vulvar disease and sexual medicine. So, when residents come and spend a month with us, they get to spend time in my sexual medicine clinic. 

They get to spend time in my in my vulvar pain clinic. They get to spend time with us in vulvar disease, where we also manage a lot of menopausal, menopausal side effects. So, this we're hoping downstream, but this will have a really profound impact on Community gynecological care in British Columbia. 

So we also offer mentorship and observership opportunities within our centers. So we do have a lot of requests for electives from other residents, but we're also able to fit in community family physicians who have resources and interest in learning about sexual medicine. 

I've just last year I had a nurse from the Cancer Agency in Prince George come and spend a few days with me in my sexual pain and sexual medicine clinics. Just learning about female cancer survivorship issues and she can take that back to her clinic in Prince George. So, so having those opportunities available, I think is really important. 

Uhm, then what I also think would be really great and this is kind of a dream would be that, uhm, these type of clinics would be opt out clinics. So, and what I mean by that is that when patients are going through their cancer treatment that a referral to one of these clinics is routine. So, where a provider may say you know as part of our treatment we refer patients to the sexual medicine clinic and then the patient has a chance to opt out. So right now, it's sort of an opt-in, or if the patient finds out about it, they get a referral. So that's what I would love to see. 

Then I also think lastly, what's important is to involve patient partners and patient advisory boards in this discussion. I think through asking them a similar question that you just asked me I think you'd get a lot of really unique and helpful answers. As to how we can improve, improve awareness from patient partners but also involving patient partners in things like conference talks and rounds. I think hearing that the power of the patient's narrative or their story is really impactful and those other stories that have actually really guided me on my journey and it made a really big difference. So, I do feel that storytelling and narrative from the patients perspective will be really important raising awareness. 

00:26:07 Almira 

Huh, definitely even in the research community as well where people study gynae cancer or like sexual health hearing what patients think and what patients want it's really important and powerful. 

Yeah, and you just mentioned a couple of your projects involving mentorship involving the residency students. Are there any other projects you want to talk about that focus on improving access to care for sexual health concerns? 

00:26:45 Melanie 

Huh, absolutely, so one of the strategies that we've implemented just a year ago last September was a social media campaign. So, we have a very active Instagram account. It's called @hello.vulva. And this basically embodies our mission to normalize conversations about vulvar health and sexual medicine, and so we talk about anything that kind of touches on any of those things. And there's a lot on there about cancer awareness. So, and I think this is really important because so many people feel isolated and alone when experience sexual dysfunctions. If they could see an Instagram post where it says something like, you know, it's normal to have grief in this situation. I think that can just be really powerful. 

Then the second project that I'm working on right now is not specifically related to sexual medicine and cancer survivorship, but it is applicable. It's a quality improvement project that I'm working on through Doctors of BC Shared Care Committee where we're developing a toolkit to support family physicians in the community to diagnose and initiate management for a condition called Vulvodynia. Vulvodynia is a sexual pain condition and this is something that cancer survivors can have. But within this toolkit there will also be a lot of resources that providers can use for patients who are having other types of sexual health concerns. This is, I think probably will be Open Access in September 2023, so another year we're just about to start a pilot project and I really think this is going to be important to improve access to care in the Community. So, this will be great for people who encounter geographic barriers to accessing care so people in remote areas or people who have professional personal financial limitations to accessing. 

00:29:11 Almira 

Yeah, all these are really important projects I think. 

And yeah, I think this would be a great resource for not only gynae cancer patients, but community in general. 

What are other sexual health resources and services that are available for gynae cancer patients? 

00:29:40 Melanie 

Yeah, so I think you're right, we have touched on, touched on quite a few things. What I did want to maybe just expand on a little bit is the sexual medicine clinic that I run so this clinic has been running for many years. So well over a decade and I took over this clinic within the last year or two from another gynecologist, Dr. Sidney Thompson, who founded this clinic. So, we see referrals through the BC Cancer Agency and we see anyone with menopause related or sexual health concerns. And we really do take a multidisciplinary approach. So, for new patient appointments we have an hour long and then for follow-ups 30 minutes to sometimes it can be an hour. We really approach the physical but also spend a lot of time on the psychosexual. What are some mindfulness tools that people can incorporate, particularly with arousal? What are some communication strategies? How can you address these issues within a relationship? Certainly, with my training I'm able to do some of those initial sort of what you'd call quote, UN quote therapeutic or therapy type things. But I absolutely don't have the skills to do anything in detail. We are very lucky to have to be a training Center for psychology residents. So, for six months during the year, we have a psychology resident who is able to see patients who need a little bit more in depth therapy or who need to see a psychologist or counselor. She's able to provide some sort of shorter to longer term therapy that's way beyond anything that I could offer as a gynecologist. 

00:31:42 Almira 

So yeah, thank you so much and we will. Definitely include all the links for the Instagram page and everything you mentioned.  I think that was our last questions and thank you so much for joining us today. It was very insightful interview. 

00:32:05 Melanie 

Thank you, yeah it was really lovely chatting with you and thanks for giving me the opportunity and anyone who wants to can reach out through social media or e-mail. I'll also give. You the link to our website as well too. 

00:32:21 Almira 

Thank you. 

00:32:22 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 gyne cancer initiative.ca