The Oncology Podcast

Let's Talk About Sex in Cancer Care

• The Oncology Network • Season 1 • Episode 28

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Welcome to Episode 28 of The Oncology Podcast's Experts On Point series, brought to you by The Oncology Network. Hosted by Rachael Babin.

Are you talking to your patients about sex enough? Research suggests that most healthcare professionals aren’t having these conversations as often as patients would like. 

Sexual health should be a core component of holistic patient care.

To shed light on this critical topic, Rachael is joined by Associate Professor Safeera Hussainy, Senior Pharmacy Research Manager at the Peter MacCallum Cancer Centre in Melbourne, Australia.

From lifestyle changes and psychosocial interventions to hormone replacement therapies, lubricants, and sexual aids, learn about the diverse approaches to enhancing sexual satisfaction and body image. Emphasizing the critical role healthcare professionals must play in addressing these topics to provide comprehensive care and break through the barriers of taboo and stigma. 

With great resources and top tips on how to approach communications with patients and their partners about how treatment will impact sexuality. 

We hope you enjoy listening.

For news and podcast updates subscribe to The Oncology Newsletter,  a free weekly publication for healthcare professionals with an interest in oncology. Click here to subscribe.

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Rachael Babin:

Hello, I'm Rachel Babin from the Oncology Network. Welcome to the Oncology Podcast's Experts on Point series. Are you talking to your patients about sex enough? Research suggests that most healthcare professionals aren't having these conversations as often as they should. To shed light on this critical topic, I'm joined by Associate Professor Saira Hussaini. Safira is the Senior Pharmacy Research Manager at the Peter McCallum Cancer Centre in Melbourne, australia. So let's dive in and talk about sex and cancer care. Hi, safira. Welcome to the Oncology Podcast's Experts on Point series. Thank you so much, rachel for having me.

Rachael Babin:

Oh, it's a pleasure. Now I like to start by getting to know our guests a bit better. Can you tell us something surprising about yourself?

Safeera Hussainy:

I'm not sure I'm quite boring and regimented now. However, it might be interesting to know that I would have liked to have done health journalism. I wanted to do journalism when I was thinking of what I should do, but I ended up landing in pharmacy. Oh wow, I mean, quite different they are. I was attracted to journalism because I loved writing and I still do and I enjoy speaking, public speaking, and actually in my pharmacy role I've had a chance to do both through conference presentations and interviews like this and writing. So I've been able to engage in those mediums, but I don't think I'm famous yet. Oh well, this will definitely help.

Rachael Babin:

So I'll move on to what we're here to discuss today, which is sexual health and wellbeing for cancer patients. So just to set the scene, can you tell us what are the common challenges patients face regarding their sexual health after a cancer diagnosis?

Safeera Hussainy:

Yep. Thanks, Rachel, In terms of the challenges.

Rachael Babin:

Yep. Thanks, Rachael. In terms of the challenges, the cancer treatments have an impact on people physiologically and the types of things that play out include erectile dysfunction, libido, vaginal dryness, body image issues and so on and so forth, so quite significant issues, and how do anti-cancer therapies typically affect sexual function and intimacy for patients?

Safeera Hussainy:

Sure, so the anti-cancer, anti-tumor therapies can disrupt the neurovascular network in the general areas and normal gonadal hormonal regulation, while impairing body parts and reproductive organs, and this then results in a range of biological side effects, including those that I've mentioned, and that can then trigger negative emotional symptoms. So also the other symptoms from cancer treatments, such as fatigue, which is number one, nausea, vomiting and psychological distress upon cancer diagnosis that can lead to depression and anxiety, can also affect sexuality. Finally, body image concerns from surgery and radio or chemotherapy, such as hair loss and weight gain, can also impact patients' confidence, with the fear of being unattractive or inferior in sexual performance, and that then leads to a decline in self-esteem, social withdrawal, reduced intimacy and relationship conflict. Thank you, it's a long list, isn't it?

Rachael Babin:

It's massive. Now, are there specific types of cancer or indeed specific types of treatment that tend to have a more significant impact on sexual health?

Safeera Hussainy:

There's nothing documented in the literature to indicate that there are specific types of treatments that cause one symptom over the other, and it does vary across the board depending on the type of cancer that you have. However, the literature also cites that this does impact mostly everyone who's got a diagnosed cancer and is undergoing treatments anywhere from 40 to 100%.

Rachael Babin:

It's quite sobering, isn't? It, it is and what are the sort of common misconceptions or taboos surrounding sex and cancer that you encounter?

Safeera Hussainy:

Well, the word itself, sex, is something that everyone hesitates to talk about and it is seen as taboo.

Safeera Hussainy:

A lot of people also think that it's not their problem to raise it, it's not their job, it's not within their scope of practice.

Safeera Hussainy:

However, consumers who we've spoken to in the work that I'm leading have mentioned that it should be everyone's responsibility. Every clinical domain needs to raise this topic across all points in the cancer care continuum. And so, elaborating on that, some of the barriers from the patient side are lack of access and resources to information that's targeted to them. So there are resources out there, but they're not specific enough or directed enough. Fear of stigma and causing discomfort to health professionals if they raise the topic, and also lack of prioritization. So other symptoms such as fatigue and nausea and vomiting tend to take precedence over sexuality, which comes up as a piece later on in their journey, once things have settled a little bit. And then, in terms of health provider barriers, lack of confidence and knowledge in how to raise this topic, how to talk about it respectfully, what sort of terms and language to use, similarly to patients' fear of causing discomfort to them and their partners, and then lack of time and prioritization.

Rachael Babin:

I think it's interesting that you noted the preference for people across the entire sort of treatment team, the entire MDT, to discuss this, to bring this up. So I wonder what the role of the pharmacist is when it comes to communicating with patients about sexual health.

Safeera Hussainy:

Again, there's not too much out there in the literature in terms of exemplar models, clinic models that we can look to to see the different roles of health professionals and, in particular, the pharmacist role, other areas specific to cancer care, for example, in delivering pharmacogenomics, for example in leading other interventions, and not just in cancer care but also in the primary care setting, for example in providing recommendations for chronic disease management then we know that pharmacists are experts in medication and in providing advice around using medications.

Safeera Hussainy:

So therefore, if we extend that and extrapolate that evidence, we could say that pharmacists do have a role to play in this area and the opportune time would be when dispensing and providing medications to patients and counselling on them. And it might just be, you know, having anchor or a hook to bring up the topic. So, for example, has anyone spoken to you yet about some of the side effects that this can have on sexual health or on sexuality? And that would be a good leeway into having a discussion if the patient was willing. The other consideration for pharmacists is the environment and that can impact the quality of the interaction. So making sure that there is privacy if available, and in our setting where I work, we do have a consultation room and in a lot of pharmacies there are consultation rooms, so there could be an invitation extended to the patient and their partner or carer if they were willing to engage in that at that time.

Rachael Babin:

Yeah, it's a really good point. Patients with cancer need to feel comfortable about discussing these issues and we've all had certain experiences sometimes where you're going into the pharmacy and you've got something slightly embarrassing that you want to discuss and there's a very long queue and you know you can feel really awkward even around really small things of course it's a very open environment, yeah, and I think it's really important for pharmacists and other health professionals to just normalize it, to to say, look, this is quite common, or, you know, in my experience I've found other patients have gone through this.

Safeera Hussainy:

Is this something that concerns you too?

Rachael Babin:

And those open-ended questions can help you to then establish a rapport.

Safeera Hussainy:

Absolutely Back to 101 in communication. Yeah, exactly.

Rachael Babin:

So, beyond the treatment side effects, we touched on this briefly, but I'm wondering if you can discuss in more detail the role of mental health and emotional well-being when it comes to sexual recovery after a cancer diagnosis and treatment.

Safeera Hussainy:

Yeah.

Safeera Hussainy:

So I think that the impact on psychosocial health is not spoken enough and not documented enough in the literature, and it's massive.

Safeera Hussainy:

In speaking with patients, that's the number one thing that they talk about, and, if I can quote some of the comments from some of the lovely consumers who I have had the chance to spend some time with and speak to, they've said things like quality of sex, life equals quality of life, or sexual health is living too, and this zero libido plays out in my life every day.

Safeera Hussainy:

It impacts on my relationship so greatly that it is taxing. We need to be talking about this honestly. One of the really cool tips that I heard from one of the consumers was that, instead of saying you'll be experiencing a new normal to patients, it's better to focus on how can you make that a better normal for them, because saying you'll be going through a new normal without providing any backup advice or strategies on how to deal with that new normal is just as bad as not saying anything. And so, in facilitating that, there is a really nice series book series and it's available as an e-book as well, and there's also a YouTube channel by Tess DeVez, who is an OT and also has lived experience of cancer on how to live a better, normal with cancer.

Rachael Babin:

Oh, thank you. We'll make sure that we include links to that in the show notes. That's a useful link, yeah thank you, thank you.

Safeera Hussainy:

And then, finally, this is from someone who is both a health professional and a consumer who's had lived experience of cancer. When the physical sexual side effects go unaddressed, the psychological impacts are severe.

Rachael Babin:

It's very illuminating. Thank you for sharing that. So do you think oncology healthcare professionals talk about sex enough? No, not enough.

Safeera Hussainy:

From all the evidence I've examined and all the health professionals and the consumers I've spoken to, they don't raise this enough. They don't give it enough priority due to those barriers that we discussed before, and it should be placed upfront in that discussion. We've got the screening tools and the questionnaires available to have these discussions to facilitate and assist. We also have resources like question prompt lists and checklists for patients to bring into consultations. It's just about the health professional leading the discussion, because I think it would be quite hard for patients to bring it up on their own. Yes, absolutely.

Rachael Babin:

And, as you've alluded to with your research, patients say this is their number one priority, and so healthcare professionals are letting their patients down if they don't step up to having this conversation.

Safeera Hussainy:

Yeah, I agree with that statement. Health professionals come in with a set of expectations and being able to gather information from patients and likewise patients and their families and their partners come in also expecting from health professionals and this may not be on a patient's radar initially because they're dealing with so much, especially when they get a cancer diagnosis it's not that obvious and they may not have read enough at that point to know that they should expect these sort of side effects. And if there's some hesitation in framing the discussion around particular side effects, just making a general statement around the fact that side effects can occur and asking the patient have you read anything or have you heard anything? That could be another way to open up the topic.

Rachael Babin:

This is an opportunity as our audience is primarily healthcare professionals who are working in oncology or an interest in oncology to give some really practical insights to help listeners improve their communication skills around this. So, when it comes to delivering information about sexual health to their patients, what would your top tips?

Safeera Hussainy:

be? That's a really good question. I'm going to be guided by the communication frameworks that are out there. There are so many and I'll just mention one because I think it's good if we can focus on one of them to guide us. So that's called the BETTER model by Elsof et al, and that was published in 2013. So the B stands for bringing up the topic of sexuality and sexual functioning, and I gave some example statements on how this could be raised.

Safeera Hussainy:

E explain to the patient or their partner that sexuality is part of quality of life and it can be discussed, so you're giving them permission to have that discussion. The T is telling the patient that resources will be provided and about the healthcare team's willingness and interest in addressing sexual concerns, and so you should have, or the team should have, a set of resources ready to go, ready to refer the patient onto. The second T is timing the discussion for when the patient wants to raise the topic, emphasising that they can raise it at any time in their journey. E is educating them about possible or expected changes or sexual side effects of treatment and then available interventions for treatment and for the symptoms that might emerge.

Safeera Hussainy:

And that's a really important point because in a recent audit that we completed in my workplace of sexual health assessment, diagnosis and referral for a sample of patients with breast cancer, we found that, first of all, documentation was poor, and that doesn't mean that the discussions aren't taking place, we're just going by the documented evidence. But then when there were issues and there were for a significant number of patients interventions were not recommended so readily, and these are mainly non-pharmacological interventions, and there are pharmacological interventions too. So having an awareness about what those are and recommending them upfront is also quite wise. And then the R in the better model is to record everything. So record it in their notes that these discussions have occurred, so that anyone else in the treating team can have a look at those notes and know where things are at and then follow up as well. And finally, part of that recording is also referral, so referring patients to specialist services where necessary, so such as gynecology or a menopause symptoms after clinic, or psychology and psychiatry.

Rachael Babin:

Thank you. Now could you talk us through what some of the common management strategies are?

Safeera Hussainy:

Sure, so if we talk about the management strategies according to the type of symptoms patients are experiencing, that would be the easiest way to tackle it. So for someone who's experiencing erectile dysfunction, the PDE5I or phosphodiesterase 5 inhibitors are a good management strategy. Alternatives include a vacuum erectile device or a medicated urethral system for erection. Also, for vasomotor symptomatic relief, medications like venlafaxine, medroxyprogesterone acetate, cyproterone acetate or gabapentin can be used. There are some lifestyle modification strategies that can also be implemented and individual or couple-based psychosocial interventions. For menopausal and vaginal symptoms, you could offer HRT hormone replacement therapy, and alternatives for vasomotor symptomatic relief include paroxetine, venlafaxine, gabapentin and clonidine.

Safeera Hussainy:

The literature also speaks a lot about physical or pelvic floor exercises for people who are going through menopausal and vaginal symptoms to strengthen the area. Also, vaginal estrogen or vaginal dilators and lubricants, so there are different types of lubricants. There's water oil or silicone-based vaginal lubricants that can be used with sexual activity, and vaginal moisturizers for daily comfort. There's a saying that I learned from Tess DeVez, who's written a good series of resources on this topic, called the Better Normal. This is what she said if sex is toast, then lube is the spread.

Rachael Babin:

I won't forget that one.

Safeera Hussainy:

Yeah, it's a good one to remember Just tells you how important lubricants are in improving the quality of sexual interaction and quality of life for patients. Finally, for menopausal and vaginal symptoms, there's sexual aids such as vibrators or clitoral vacuum devices. And then the last category is body image or relationship and sexual satisfaction concerns. The evidence points to using psychotherapy to talk through these concerns and also couples-based counselling.

Rachael Babin:

Excellent, well, thank you. In an ideal world, what would your best practice be when it comes to that supportive aftercare?

Safeera Hussainy:

In an ideal world, I would love to see everybody talking about sex and sexuality in cancer and raising it in every discussion that they have with the patient and their family and talking about it as if you know they're talking about the other symptoms. And what comes with that is being able to use really effective communication techniques such as teach back, motivational interviewing, open-ended questions, like you mentioned, those sorts of things that people are already very well versed in.

Rachael Babin:

Yes, the professionals have the skills, but they're not necessarily applying it to this problem. Correct, because we know that lots of clinicians are often asking their patients about, beyond their symptoms, about their diet, about their lifestyle, whether they're maintaining a social life, and so their sexual life is as important, if not more important, as you've mentioned.

Safeera Hussainy:

That's right. It's something that shouldn't be kept behind the closet or the curtain. We need to unveil that curtain and bring the problem onto stage, as they say, and talk about it yeah.

Rachael Babin:

So what's next? What's your next work in this area?

Safeera Hussainy:

So we've just finished this audit I mentioned and we're analysing the data from that. We've also wrapped up a scoping review of questionnaires, screening tools, guidelines, education programs and service delivery initiatives all of those particular to adolescents and young adults, and that publication will be available, hopefully soon. And the next step, which is really exciting, is that we're going to be co-designing a sexuality clinic at my workplace. Oh, that's excellent news.

Rachael Babin:

Well, congratulations, that's exciting.

Safeera Hussainy:

So we're going to be working with consumers and health professionals to work out what needs to happen, what does it need to look like, who needs to be in the team, what needs to be the FTE of the team, what are their roles, and then developing a business case from there and will you be treating across the board or just AYA the?

Safeera Hussainy:

intention is for it to be available to all patients with cancer and not to be specifically targeted to one particular group. However, when we're scoping the model and we're doing those co-design workshops, it'll be interesting to see what comes out if participants do think that we need to focus on particular groups or we can offer such a service as a one-stop shop.

Rachael Babin:

Okay, well, please keep us posted, because that sounds like a really exciting intervention. Absolutely, and really to help shine the light, as you say, on something that we all need to be talking about a lot more. Thank you for coming on the show. I've really appreciated you taking the time to talk us through this because, as you say, the statistics and the feedback that you have from consumers is really startling and sobering. You know, some of these fixes simply asking an open-ended question are quite easy and something that people can incorporate into their practice straight away. So hopefully this helps you with that mission to get everybody talking about sex.

Safeera Hussainy:

Thank you so much, rachel, for having me. I had a great time and I do also hope that this just primes people and lifts the lid on the topping and gets them thinking about it. Fantastic, thank you Thanks.

Rachael Babin:

Thanks so much. You've been listening to the Oncology Podcast's Experts on Point series brought to you by the Oncology Network. To explore more podcast episodes, head over to our Oncology portal at oncologynetworkcomau. Registration is free for healthcare professionals and provides access to exclusive content and educational podcasts. If you found today's episode valuable, please share it with your colleagues, and if you have exciting research or news to share with our listeners, we'd love to hear from you. This is Rachel Bavin. Thank you for tuning in to the Oncology Podcast.