Beyond the Cancer Diagnosis: Dialogue with Sarah, Hosted by Adrian Pogacian

In the recent episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian calls attention to an intimate subject that affects all of us in a hard conversation with Sarah, psychosexologist and sexuality educator.

Sarah is a psychosexologist and sexuality educator dedicated to promoting sexual well-being and pleasure-focused education. Her research explores the impact of psycho-sexual education on enhancing sexual health for individuals recovering from cancer. Driven by her belief that everyone has the right to a fulfilling and pleasurable sex life, Sarah is committed to breaking stigmas surrounding sexual health and advocating for open conversations. She is passionate about pleasure focussed education, providing accurate, positive information that empowers individuals to develop a healthy and satisfying sexuality, regardless of their circumstances.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone, welcome to a new edition of Beyond the Mind and let’s say intimate subject that affects us all and for sure it will be a lot of questions and we are going to talk about sexual health in adults with cancer with our guest Sarah. Thank you for accepting our invitation. How are you?
Everything okay?

Sarah: Good, thank you. Hi, yes, thank you so much for having me. Yeah, I’m really excited to talk about this.

Adrian Pogacian: Yeah, it is a subject that, as I mentioned, it affects us but not all of us have maybe the courage or for us it’s the sentiment of shame to ask some questions or to find out. So these things may lead to some bad events even more if you are diagnosed with cancer. As we all know, sexual function is a vital aspect of quality of life among adults and despite the fact that it’s a physical need, it has also psychological factors that contribute to sexual health.

What I want to ask you first from your point of view, if you can give us a definition or to explain for our audience in, let’s say, normal terms what sexual health means and what is optimal sexual function?

Sarah: Yeah, absolutely. So yeah, it’s maybe, like you say, it can be a bit of a taboo or stigmatising topic so it can be a bit difficult to find out what all the different terms mean but sexual health is quite a broad definition that includes a lot. It includes, like you say, the physical, the emotional, the mental, the social aspects of well-being but in relation to your sexuality.

That does include also function of course but it’s not only function, that’s really only one part of it because sexual health is also your sexual rights which I can go into in a minute but being sure that these are respected, that you can experience pleasure, that you can experience satisfaction and that sexuality is also something that’s positive for you.

So the rights are, that means like your right to experience sex free of coercion for example, your right to experience pleasure but also things like your right to choose to marry or to choose how many children you want without anyone influencing that and most importantly is your right to education and to information. So actually without that right you can’t have like a productive sexual health which I think is very interesting when you get into subjects about sex education.

Sexual function, that’s just one part of sexual health. Of course an important part and maybe something that we focus on so that you could define as, I think it’s the absence of difficulty moving through the stages of sexuality so that’s desire, arousal and orgasm.

So if you can move through those stages without any difficulty then you would have optimal sexual function but something that’s kind of up and coming a little bit is using instead of these separate terms is using the term sexual well-being because that just emphasises the fact that even without optimum sexual function we can perceive our sex lives to still be satisfying because sexual well-being is then the evaluation that we have of our sex life.

So even if we do experience a difficulty with desire or with orgasm or something, if we still experience pleasure, if our sexual rights are still met and we’re still having fun and enjoyment then you can have satisfying sexual well-being.

So there’s a lot going on but it’s kind of up to you to define it for yourself a little bit.

Adrian Pogacian: I understand. You mentioned about sexual health education and the term right. It’s like a right of individual.

Sarah: Yeah like a human right to have access to information.

Adrian Pogacian: Nowadays there are a lot of issues regarding human rights, human security and I can’t think about cultural background regarding sexual health as a right in some closed societies. So I guess it is a term or a notion that needs to be on the front lines from now on because when we are talking about rights and we are talking about sexuality in terms of pleasures, in some societies they are not matched. If you understand what I mean.
So it necessitates an important cultural background and you should be very open to this kind of let’s say not activity but well-being.

Sarah: Yeah because it’s also not only providing information, it’s providing correct information. So there’s also a lot of cultures where maybe they are talking about it but it’s not scientifically correct. I’m thinking maybe some more conservative schools where they’re providing sex education where of abstinence only that the only way to not get pregnant or to not have STIs is to never engage in sex.

True but there are other options. Yeah and then there’s cultures of course that don’t speak about sex at all and this can cause a lot of problems later. It can cause maybe most significantly is the other sexual rights that can’t be adhered to either because people don’t know if you’re not provided with the information you then don’t know that you have the right to have sex without coercion.

You don’t know what consent means. You don’t know what pleasure can like that you have the right to pleasure and how that feels in your body. So yeah it’s kind of step one of everything else.

Adrian Pogacian: It is very important indeed because as I told you before the interview I have two kids, a boy and a girl and I don’t know why regarding the boy I’m not so concerned but regarding my daughter as she grows up I became more and more concerned.

So also in Romania they started to implement for the moment like a social movement this intention to introduce sexual health courses but it’s very difficult to break a closed society like us but for parents like me it will be very useful because there are questions that you mentioned before I can’t answer you know

so I just can’t answer from my own experience but now the society is such in a movement so every day it’s like a new day totally different it’s not seems like was yesterday so and I can’t keep going with the evolution so it is a really neat and except the cultural background what are other conditions or situations that affect sexual health and how we can manage these issues?

Sarah: Yeah it’s interesting you say you can’t answer the questions because it’s so sex is something that impacts us all which I think is an interesting part of psychology because we study things like depression and anxiety so much but maybe not everyone will be impacted by depression anxiety whereas every single living person even if you identify as asexual you will be impacted by sex and yet we don’t talk about it as much I think it’s yeah it’s interesting so and sex it impacts everything and everything is impacted by sex it’s very like multifaceted and it combines together it’s a paradox you know yeah everybody

Adrian Pogacian: like it’s doing but in the same time not in the right way but it’s not only the act that that counts and we see a lot of issues a lot of problems after sexual contact especially nowadays with a lot of social media influences so yes it is very very difficult to to manage this yeah and there’s a lot of things that

Sarah: And there’s a lot of things that are impacting our sex lives and whether we’re having a satisfying sex life so because yeah it can be impacted by things like social media the social social sphere in our cultures that we’re spending time in but it can also be impacted by your physical body if any medical illnesses it can be impacted by your relationship and by your mental well-being so things like your body image is also something that we’re talking about more with the use of social media

But those who maybe have a worse self-esteem or a poor body image they may avoid sex they may not their partner to see them without clothes on they may not have so much desire to have sex anymore then you’ve also got things like if you’ve got relational tensions like stress in your relationship and that could be from communication issues it could be from children and having job stress stress tends to also decline our desire for sex it can also reduce the satisfaction that we’re having during sex

You’ve also got then things like mental health issues which can impact sex so things like if you do have depression it’s quite common for people with not have very high desire and another paradox is the medications that we tend to give to people with depression also impact your sexual well-being it can impact your ability to have an erection or to reach orgasm and impact your arousal actually as well so like it’s very many layers to it

And then you’ve got the medical sphere so things like chronic illnesses like diabetes and cardiovascular problems that can impact blood flow so that could make erections very difficult or it could prevent sufficient lubrication but that could also change your nerve sensations it can cause nerve damage and things like that which could make the sensations that were once pleasurable very painful or the other way around and then you’ve got things like the hormonal changes

So you could think menopause but this is also very relevant to cancer of course because when you go through hormonal changes your sexual body is going to change yeah i think cancer is maybe quite a sort of nice example for summarizing it all because everything i’ve mentioned cancer impacts it’s so holistic so you’ve got all of those things you’ve got the fatigue you’ve got the nerve damage you’ve got the stress the mental health issues and all of those things will individually and combined impact your sex life

Adrian Pogacian: You mentioned also and you talk about more about psychological factors and you mentioned cancer in psych oncology when we discuss about the impact of cancer diagnosis the first emotion is fear and this is like a common fear a common emotion for every oncological patient and fear is the only negative emotion out of all emotion but in the case of sexual health when one of the partners are diagnosed with with cancer which emotion will be dominant or which is the first instinct let’s say that the cancer patient fears or experience and also for his caregiver or partner yeah yeah i think it’s a really

Sarah: I think it’s a really interesting question and i think the one that comes to my mind is it’s very related to fear but it would be maybe anxiety because i just think that anxiety has an interesting relationship with sexuality anyway because arousal is sort of that sweet spot of anxiety that like there’s the arousal of the unknown but not too much because then that then destroys our arousal

And i think when we talk about cancer we can see that fear anxiety and everything and i think that really relates with sexual health because you have things like go back to body image the anxiety of how our body is going to change the anxiety of will my partner still find me attractive will i will my body function sexually the same as it did before or how will those changes feel um what will my sex life look like you’ve got

then the anxiety of the future is is this change in my sex life permanent is this change in my relationship permanent you could then have anxiety from avoiding sex

Which is very common because then you get um it builds it up and it can become something that’s got a lot of pressure behind it and or maybe things like performance anxiety as well if um sex has changed or has not been something you’ve done very recently or if you feel that your body looks different or is performing differently there can be a lot of stress on how you’re doing while you’re having sex instead of experiencing the pleasure together you’ve then got things like thinking like pain during cancer and having anxiety of of having pain during sex

Which is again a very like mutually exclusive or mutually mutually relational i guess they impact each other um because you can pain can cause anxiety but having anxiety about feeling pain can cause pain um many women could develop vaginismus and things after cancer because of the anxiety of experiencing pain again and then i think it’s also maybe the most apparent in the partner because the partner has so many stresses

And so many uncertainties i mean am i being a good enough caregiver um will me touching my partner hurt them can i touch them intimately do they want that the fear of rejection i think can be huge if a partner wants to engage in an act of intimacy but they’re not sure that the partner with cancer can cope with that once that can do it can feel it

that can be really stressful and then i think there’s a lot of anxiety about the shame of even wanting to have sex you know my partner has cancer and i’m sat here worrying about about sex and about when we’re next next gonna be intimate and that can make people feel very selfish and make people feel very anxious about that um which is totally not necessary but is understandable yes uh and now we

Adrian Pogacian: Yes and now we are going in my opinion to another paradox um because we are talking about couples and now in this situation uh also about families and um the paradox is that uh as i mentioned before the society is progressing yeah uh and we evolve very very much but in the same time it’s like sex become the most important things on the relations even though there are other things that we’ve learned to be more important so this uh cancer diagnosis can end the relation in your opinion or can end the family life

Sarah: From the research that i’ve read because i was really interested in this actually when doing my own research um the separation rates were in couples where there is a cancer diagnosis is actually really similar to the general population so they’re not separating any more than the general population is but in the separations that do happen um when someone has cancer it’s uh six to eight times more likely to be the woman who is diagnosed with cancer

Which i just think’s an alarming statistic but also an interesting statistic because it does suggest to me that it’s the men when they are when they are the caring partner when they’re the person that needs to care for their other partner yeah the caregiver thank you um they maybe we need to support them more maybe they need um the space to share their emotions more maybe they need help with how to be that partner

With how to be intimate with their partner with um with cancer um how to fit into that role so yeah i just think it’s a really interesting statistic but there needs to of course be more research done on to why exactly but um i think when the separations are happening cancer might be the catalyst it might be the thing that triggers it but mostly there has already been some existing tension or existing problems in the relationship um and there’s of course a lot of people when they have been diagnosed with cancer

And particularly when they’ve survived it they can really have this new outlook on life this new like i’ve been given a second chance i want to embrace it and maybe that can also be a catalyst for ending that relationship that you weren’t fully happy in um or yeah having that confidence to be like i’m gonna do something new i’m gonna change so i think that could be the catalyst but usually there was already something going on

Adrian Pogacian: Also me or even you as a specialist or being involved in relations being married i i don’t believe in also in what you mentioned that you know cancer diagnosis just can end direct the relation it is for sure something going on during the relations

And cancer might be only the reason or the uh let’s say plausible reason or the elegant reason for the other part just to to get out for the relations that however didn’t didn’t went well of course we are not judging people we just we are here to to have these hard conversations for everyone who are listened and wants to find out more about how important or not is sex in uh relations and according to this the philosopher Nietzsche said very very beautiful that it is not a lack of love but a lack of friendship that makes unhappy marriages

do you think that the friendship it is we can regard it as a coping strategies because we all know after a cancer diagnosis we try to find out coping strategies especially positive ones so friendship might be a coping strategies

Sarah: Yeah 100 i think it’s um yeah a very beautiful quote and I think it’s true always but maybe something that becomes more apparent during cancer um because the other parts of relationship can can struggle during this time and i think something like friendship which includes for me anyway i think that includes communication it includes still intimacy and closeness but maybe an intimacy that doesn’t involve sex

And i think that that’s such a powerful tool during cancer but but always so i definitely think it’s a coping strategy i think it allows people to to work together as a team during a really difficult time and yeah that closeness that the feeling of touch the like a supportive partner can really help with not feeling so isolated anymore it can help the acceptance of the diagnosis it can help with the rehabilitation into life again afterwards um i think it’s a really important and powerful tool that we that we really embrace

Adrian Pogacian: And to be friends more than because you know we all know that loves not past but during time when you enter into routine after let’s say 10-15 years of not marriage but also after 10-15 years of relations uh if you are not friends the first obstacle means the for the first breakup

so it it is very important to to be friends to remain friends and so on uh we are not still uh have very much time so i would like to ask you like the final questions that i believe everyone is interested in how can i have safe sex during treatment or after treatment i guess this is the most important questions of all of them before yeah um so my first thing would be uh feel your

Sarah: Feel your body listen to your body sex should never be painful if there is pain stop do something different try something different sex should be pleasurable um hand in hand with that sex is not penetration um the very it’s a very heteronormative idea that sex needs to be penile vaginal penetration and it’s completely not true you define what sex is for you if that is just an act of self-exploration if it’s an act of intimate touch it could just be a game fun it could be a cuddle

Like you get to decide um with that said your immune system could be weakened due to treatments so it is very advisable to wear condoms and use lubrication because that can just prevent any irritations or tears and infections things like that even if it’s your usual partner it’s just safer to use these and i think with that as well manage the symptoms that you’re experiencing the side effects that you have so chemotherapy and hormonal therapy can cause vaginal dryness

So use lubrication use a vaginal moisturizer because that can prevent pains and tears and things like that can just make sex more pleasurable for you if you have um low energy levels and you can incorporate that in so you can be very mindful of that so things like choosing a position where you get to lay down and relax a bit more um and you can again incorporate that into the sexual play you can experiment with your partner with finding props and pillows that mean your body is in the right position for you to feel the pleasure without having to exert any energy i think as well hugely in this is use toys

I think these are widely under acknowledged sexual toys are a fantastic tool things like a dildo can really take the pressure off anybody who’s struggling with erectile dysfunction from nerve damage you different sensations might feel good at different parts of your body whereas others don’t anymore so any kind of vibrators can really help with that and it can be easier instead of having to thrust an entire body you can then just use a toy of course this can also be alone and that could save somebody a lot of energy by using a toy

I think it’s important to talk i think that’s the most important one be open with your communication say what it is that you desire what it is that you need what doesn’t feel good anymore what kind of intimacy do you are you seeking for um and be flexible with one another um that’s the easiest way to do it sex at the end of the day of closeness it’s a way to um become together and uh yeah feel pleasure there shouldn’t be too much pressure behind it

And if you’ve got a specific situation i think it is also important we can speak to healthcare professionals about this you can go and talk to your nurses or oncologists or whoever they actually should know about this it might be an awkward subject but go for it yeah

Adrian Pogacian: As we mentioned before if you are friends in our relations it is very true the sentence that in every self trust there is an opportunity you just have to see it and if a couple is friends they can explore new possibilities opportunities except only the challenging issues of cancer related issues so thank you very much for thank you so much your explanations for your accepting our invitation and hopefully we’ll see again maybe on other subjects related to sexual health

Sarah: Thank you so much