Sexual wellbeing is often a low priority for those receiving treatment for breast cancer but it’s important to be aware of how your body will change and what you can do to help ease symptoms.
In this episode of UpFront, Sexual Health Nurse Simone Sheridan talks about how sexual well being is more than sex and genitals, answers the awkward questions many are too embarrassed to ask and explains why it’s not ok to push through pain.
- BCNA's My Journey Online Tool
- BCNA Online Network
- Sexual wellbeing hub (BCNA.org.au)
- Let's Talk About Vaginas group on the BCNA Online Network
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by Tara Simmons, and this episode was made possible through the Supporting Women In Rural Areas Diagnosed with Breast Cancer program, funded by the Australian Government through Cancer Australia.
Kellie Curtain [00:00:03] Let's be upfront about sexuality after breast cancer. It's a topic that not many women are comfortable talking about and as a result people struggling with it avoid seeking help. But cancer treatment does cause physical changes to a woman's body and can impact on her sexual well-being. In this episode of upfront we're going to talk about some of the sexual side effects of breast cancer treatment, what causes them and how to manage them. Joining us is Simone Sheridan, a sexual health nurse consultant at Austin Health and breast cancer survivor Alison Fraser. Welcome.
Simone Sheridan [00:00:40] Hi.
Alison Fraser [00:00:40] Thanks.
Kellie Curtain [00:00:41] Already I know so many women listening will be thinking thank goodness that someone is going to talk about this!
Simone Sheridan [00:00:49] Yeah. Finally.
Kellie Curtain [00:00:51] It's a little bit uncomfortable for people isn't it?
Simone Sheridan [00:00:54] It is. And I'm so glad it's in this format of a podcast because I can imagine people with their headphones on going for a walk or doing the dishes but actually getting a chance to experience this conversation.
Kellie Curtain [00:01:04] So Alison, having lived through breast cancer treatment. What were some of the things that you experienced from a sexual well-being perspective that affected you?
Alison Fraser [00:01:21] Affected me? Putting quite simply vaginal dryness. I was prepared for it. I had an oncologist who had warned me that was a potential side effect. So when it happened and it happened quite suddenly and I knew what it was. So the first thing that occurred to me was how difficult it would be if you didn't know what it was. If you hadn't been told if you hadn't ... My oncologist is great and gives me written information and I read it, but if you hadn't read the small print or even if you weren't very sure what vaginal dryness actually means. Does that mean just not as wet as normal, or what does it actually mean? But I did know what it meant. And it was a question therefore of actually saying okay, what am I prepared to do about it? Which did include asking somebody but it also leads to a situation where, as most people who have had breast cancer or probably any serious illness will easily realize, that eventually it comes back to a decision you have to make for yourself which is: I can do this, or I cannot do that or I can hope it goes away. And you often don't know who to talk to when. And I think it's quite hard for professionals who are not trained in women's sexuality. That's not their area of specialisation. If you were an oncologist to actually talk to women about it or to talk to men because it affects men who have had breast cancer too. So not necessarily vaginal dryness but their sexuality is affected.
Simone Sheridan [00:03:01] I think it's a greater thing in society isn't it that sex is so taboo. I mean it's everywhere. It's on the media. We all.
Alison Fraser [00:03:07] It's not only everywhere, it's at us every day.
Simone Sheridan [00:03:10] Yeah.
Alison Fraser [00:03:11] But it's all about. Largely fake news. It really is about yhis is what you're expected to do. This is the level of sexual activity is expected to have. This is what's considered normal, this is what is considered raunchy, this is what's considered fun. But it's not about this is the sort of problem that lots of people have and now we'll talk about it because it'll be really good to get it out in the air.
Kellie Curtain [00:03:37] Well I think that's right. And Allison just said "normal". The word "normal". And normal is different for everybody Simone, isn't it? So how many women actually... and men, suffer in silence unsure whether what they're experiencing is normal?.
Simone Sheridan [00:03:55] I would imagine so many. So many do. I mean the women that come to see me have actually put their hand up or they've sought help and they've got a referral and they've come through to the sexual health service, but many of them have a story of it's been weeks or months or potentially even years that they've sat with things and not spoken about it. So I suspect there's a lot of women and men out there that are experiencing symptoms because we have we all carry a lot of shame around sex and it's there's a lot of secrecy. And so it's it's almost seen as oh I'm less than because this has changed now. So I don't want to speak up and seek help for it.
Kellie Curtain [00:04:28] So Alison has touched on vaginal dryness. What are some of the more... like that? Common issues that people face following breast cancer treatment?
Simone Sheridan [00:04:38] Vaginal dryness is definitely one of the one of the big ones. But I think we've got to think sexuality is much more just than in the act of sex. And of just in our genitals. It's actually, it's a big encompassing thing of who we are and how we see ourselves in the world. So for a lot of people it's actually about body image and how they feel about themselves. The thinking of more specific sexual problems as well, one of the big ones that I do speak to a lot of women and men about desire discrepancies in the relationship.
Kellie Curtain [00:05:08] So what, loss of libido?
Simone Sheridan [00:05:11] Yeah yeah but a change. And you know that that can be influenced by so many factors. I mean sexual desire is is a very interesting and complex phenomena and I think we spend our 20s and our 30s maybe experiencing more spontaneous sexual desire and then often when there's an illness or an injury, or as we age we start noticing that spontaneous desire might start to be a little less frequent. Or with for example with breast cancer it might be a sudden drop away. That could be influence from physical reasons because of medications or it could be from psychological reasons to how we feel about ourselves and our body changes.
Alison Fraser [00:05:46] And it can be quite sudden. I mean. I was about to say I blame... I don't blame my medication has a lot to do with it. I'm very grateful to my medication. I'm still here. Yeah it's doing what it should be doing. But it's sometimes very easy to look for help and not so much be fobbed off... but my vaginal dryness happened really quickly and it happened precisely after I'd gone on medication. I'm pretty sure of what caused it because at my age I've been told so many times that this is a natural part of growing older and it had nothing to do with it. To which the answer is rubbish!
Kellie Curtain [00:06:33] So how do you balance that, Simone?
Simone Sheridan [00:06:36] There are natural age related changes that happen to us as we get older. There is changes that happen to our bodies that happen to everyone's bodies but they don't stop us being sexual beings. And I think you know, going through menopause is a really big life stage for women and that does that can actually cause vaginal dryness. And how do we balance that with... I think the thing that happens with the breast cancer treatment is that happens really suddenly. So in menopause and as you age these changes happen quite slowly. Your body can adapt to it and seeking help might be something that you've got a bit of time to work up to and build the confidence to.
Kellie Curtain [00:07:10] And you've got that you're mentally preparing for it.
Simone Sheridan [00:07:20] Yeah. And and a lot of the treatments are really similar for women who've been through menopause as well. But that suddenness can be can be so hard and you think about you know a body adapting to such big changes so quickly that it can feel really significant.
Kellie Curtain [00:07:36] So do what do we do?
Simone Sheridan [00:07:38] What DO we do? [Laughs]
Alison Fraser [00:07:40] I'm not the expert at all. Because in many ways my way of dealing with it was to some extent predicated on my circumstances and my age. One - I was in a very stable long lasting relationship where we could talk about these things and where "normal" - what I call common garden intercourse was not the only form of sexual expression that we we're accustomed to. So there's a there's a headstart. Had I been 35, um, starting a new relationship or looking to start a new relationship, already possibly sensitive about the fact that I have lost a breast or I've lost two breasts - totally different circumstance. So my way of dealing with was to a certain extent to say "this is a side effect. It's a side effect I can live with and I can work my way around it". Quite simple as that.
Kellie Curtain [00:08:34] So Simone is it usually a side effect that lasts forever?
Simone Sheridan [00:08:39] Once the body has been pushed through menopause with the medication then those side effects of vaginal atrophy it's often called where there's this dryness and inflammation is is a side effect. The body can adapt slightly but that side effect is likely to be permanent.
Alison Fraser [00:08:52] And the side effects may vary also. I mean I certainly have atrophy and that's been well and truly I've got it I don't have any inflammation yet so I have no discomfort.
Simone Sheridan [00:09:02] Whereas for some women I think they can experience quite high levels of discomfort even walking just.
Kellie Curtain [00:09:07] So not just in a sexual activitiy but in everyday life which can be quite debilitating and distracting.
Simone Sheridan [00:09:13] Yes yes I mean as women we don't walk about our days thinking about our vaginas generally we don't have any conscious feeling of that.
Alison Fraser [00:09:23] Whereas it is constantly rubbing in your face that you don't work the way you used to.
Simone Sheridan [00:09:28] Yeah I think that's a really important thing. So if there are women out there thinking I'm more aware of my vagina than I was before that's really worth talking to someone about so that it is distract them and annoy them throughout life as well.
Kellie Curtain [00:09:39] And also because it is a permanent change that's an even greater reason not to feel like you've got to put up with it.
Simone Sheridan [00:09:47] Oh definitely. And we have some really good treatments for it as well.
Kellie Curtain [00:09:50] What are some of the treatments?
Simone Sheridan [00:09:51] So some of the treatments people have probably heard of vaginal moisturizers. You know as we get older skin gets drier and we wear moisturizers on our face? Well that's similar for the vaginal tissues as well.
Kellie Curtain [00:10:01] We all go out spending a fortune on those!
Simone Sheridan [00:10:04] Exactly! And there's some very good vaginal moisturizers and what they do is they can be used as a daily moisturizing cream sometimes even two or three times a day if a woman feels that that's helpful.
Kellie Curtain [00:10:16] Sometimes there are concerns I believe with creams that contain oestrogen especially...
Alison Fraser [00:10:24] I had one one. I was very ... I wasn't going to touch it! As simple as that.
Kellie Curtain [00:10:30] Well because you were fearful of it affecting your treatment?
Alison Fraser [00:10:34] To reduce the impact of estrogen potentially on cancer cells. So why the hell would I do that?You know sort of it wasn't it didn't seem terribly good idea. It was my breast surgeon who is terrific who sat me down and worked out with a sheet of paper and a pen. Exactly what was happening for me in my circumstances: at my age, with my diagnosis, where I was in treatment what was happening with the rest of my body how little impact this was going to have. And indeed he convinced me, I have been using it and things have improved. And to me what was really good about ... this isn't a magic cure. This will help. But also it was really good to actually be able to talk to somebody who would go to that amount of detail about not just this is good for the condition but this is why it is good for you because if if atrophy goes too far it can cause other complications. So there are very good medical reasons for doing it as well as reasons for your sexual health and your ongoing sort of feeling good about your body. So it is worth investigating. It may not work for everyone but it's certainly worth investigating.
Simone Sheridan [00:11:48] I think it's definitely worth talking to your doctor about it because it is a decision that's made based on your individual risk.
Kellie Curtain [00:11:54] And clearly individual, well we're all different physically. And therefore a one size fits all approach to sexual health is he's not going to work is it?
Alison Fraser [00:12:10] It's not. But I mean for many women I can't speak for men but I imagine it's probably much the same. For many women there is a bit of a one size fits all in terms of treatment for breast cancer full stop. You know we're not perfect about chemo. This works for most people so we'll try it for you. So people have probably gone through a little bit of this before they start getting to the stage where their medication is causing the problem. So this is yet one more one size fits all which I think people do actually experience a little bit of that. It's not because people are not thinking of them as individuals. I think it's far more because medically we just haven't got that far yet to be able to tailor things to individuals. But it does tend to I think encourage people unless they're very much their own advocates to say oh well that's just what the treatment does.
Simone Sheridan [00:13:04] And just to make a point to that this the worries around oestrogen in vaginal creams is particularly for women who have oestrogen sensitive breast cancers. So not for all women with breast cancer. Yes. So for some women it's fine and they can use it and for other women they might want to have a chat with their oncologist about it. So we've got the moisturisers, we've got the oestrogen-containing creams and we've got good quality lubricants in terms of sexual activity. So the moisturizers and the creams are really good for maintaining that everyday moisture and reducing that everyday discomfort. But in terms of sexual activity the ability of the vagina to self lubricate in the way that it did before treatment isn't going to be there. So we need to provide the lubricant externally. And look I could talk to you for hours.
Kellie Curtain [00:13:48] It's not just about the different flavors!
Simone Sheridan [00:13:52] Well actually I tell people to avoid lubes with flavors and.
Kellie Curtain [00:13:54] Is that right? OK!
Simone Sheridan [00:13:55] A lot of the flavored lubes and the colored lubes actually contain sugars and if you are using a lubricant with sugars in, particularly if you've had cancer treatment, then that might put you more at risk of thrush. And that's definitely not something you want to add into the mix.
Kellie Curtain [00:14:10] There's enough going on already isn't there?
Simone Sheridan [00:14:12] I would always recommend a good quality organic lubricant. They come in ... Would you like me to talk about it?.
Kellie Curtain [00:14:19] Well I'm sure we could go on for hours about different lubricants.
Simone Sheridan [00:14:21] Well I'll just give you a little overview in that you can use water based lubricants or silicone based lubricants. They're the most common. Water based lubricants are great and useful in all circumstances. The one thing you need to be aware of is you might need to top them up throughout the activity because they can be absorbed into the body, which is fine. The silicone ones are much more long lasting you can use a little bit and it will last for a long period of time and they feel actually a lot more comfortable. But the problem is that they're not good if you're using silicone sex toys because the silicon on silicon can rub things away.
Kellie Curtain [00:14:54] Note to self on that one.
Simone Sheridan [00:14:54] And it's also really if somebody is in a long term committed relationship where they're not using condoms or any sort of barrier protection actually organic olive oil, coconut oil, almond oil can be used as lubricant but you want to avoid the oils if you're using a condom or barrier protection.
Kellie Curtain [00:15:09] Yes. We've talked about not suffering in silence. Sometimes it can actually be quite dangerous to push through pain.
Simone Sheridan [00:15:18] Yeah it really can be. So for some women experiencing penetrative intercourse after breast cancer especially if maybe there hasn't been maybe that person isn't feeling really in the mood there hasn't been lots of foreplay and warm up time and there's not enough lubricant happening then there can be a painful reaction to that. It's really important that if somebody experiences pain then then that sexual penetration stops and they have a talk about it and potentially have a chat to the health professional as well about it. The risk of pushing through pain is that it can set up a condition known as vaginismus where there's involuntary contractions of the pelvic floor muscles because the body goes oh I don't want to experience this again. And so it locks those pelvic floor muscles in. So if there is pain happening, pause that activity and and look at more external pleasure potentially for for a while and actually talk to talk to a health professional about that.
Kellie Curtain [00:16:15] So Alison mentioned she's in a long term relationship. What about those that are not. How do they go about, well, broaching? What recommendations do you have for those that...
Simone Sheridan [00:16:29] Yeah I've definitely spoken with women that have said oh gosh I just don't know where to go to from here. So much has changed. How do I talk about it? I think a really good way to think about it is that especially as we go through life we never really enter a relationship completely without any baggage. Whether that's things that have happened to us emotionally in the past, or physical changes, and I think that one of the best approaches to take is to actually talk about that with somebody early on. Instead of seeing it as a barrier and seeing it as something that you need to hide away, actually being upfront about about what's happened to you and how you're feeling. Obviously those details you might disclose as you get to know somebody better and you can kind of gauge their reaction to it. But actually having those conversations might... You might find that there's moments when you share something that you feel gosh you know it is this horrible thing that I want to... You know I need to be able to tell. And you tell someone and often like that might give them permission to share some things with you that they also find challenging in life or you know or is going on for them from a body or sexual perspective too, so it might actually deepen the relationship.
Alison Fraser [00:17:34] I think that's true. I think there's also another aspect of talking about it which is how do you know it from the point of view of the person who's giving advice not the person who's seeking it. How do you know how much was enough at what time. I've heard so many people say nobody told me that and there's real anger in that. You know I've already been dealing with the fact I've got breast cancer, I've already dealt with the fact that I have you know I've lost a breast or I've lost both or you know I've already had surgery I've had reconstruction. I've gone through all this and I'm having treatment for it and then something happens and the answer is "oh that was caused by..." Why didn't anyone tell me! I have no idea how any professional knows, sometimes when they've met a person for the first or second time whether this person is capable of hearing the full gamut of what might happen - heavily emphasis on might - or is not. So as a professional how do you you gauge that when somebody comes to you and says I'm looking for information? I have an oncologist, God bless him he's wonderful, who tends to go through "I'll tell you everything" and I walked out of my first meeting with him thinking I'd been hit over the head by a steam roller.
Kellie Curtain [00:18:54] It's a real balancing act.
Alison Fraser [00:18:57] Other people who get told everything will be okay but then it isn't. And they're deeply resentful. It's really tricky stuff. How do professionals manage?.
Simone Sheridan [00:19:05] It's really hard and I don't think there is a good textbook on this. And I think every professional takes it differently in terms of building up that relationship with the client or the patient that's coming in. I think there is some information especially around cancer treatment that we really have to make sure is conveyed in terms of risks and side effects. There's other information that can be given at various times later. Unfortunately sexuality is one of those things that it's not a life or death situation and.
Kellie Curtain [00:19:31] And as far as the list of priorities when you're going through breast cancer it may not seem...
Simone Sheridan [00:19:35] It mayactually be pushed way down the list.
Alison Fraser [00:19:40] For most people the immediate reaction is I'm going to die.
Simone Sheridan [00:19:43] Yes.
Alison Fraser [00:19:44] So we're dealing with fact. No,I'm not going to die and I'm going to do this and I'm going to do this and we all know we've got these appointments and we will go through. The last thing we were actually thinking about is sex because right at the moment it is not it's not on the cards.
Simone Sheridan [00:20:00] It's not on my list and I need to get through this. And I don't know that that's necessarily the best time for many people to be talking about it and they're trying to take in so much other information that to try and take that in as well. I think the most important thing is that people know that it's a topic that's up for discussion if they'd like to talk about it.
Kellie Curtain [00:20:17] So how do you balance between telling someone what might happen and scaring them and pushing towards the, "well I'm sure they'll bring it up if there's something going on".
Simone Sheridan [00:20:34] So one of my roles is that I try and educate health professionals to talk about sex. And so one of the ways we talk about having these conversations is to generally bring it up in the sense that saying having breast cancer and breast cancer treatment can actually have an impact on on your sexuality and your sexual function. Is this something you'd like some more information about? Because you can gauge from that person's response as to how much more information they'd like about it and then you can say say to them, would you like me to go through some of the risks? These are things that might happen to you. Or would you like to talk about things as they come up? So yeah putting the autonomy back with the person experiencing that.
Alison Fraser [00:21:09] And this is an issue I think for everybody in that circumstance. Ultimately you have to make the decision that your medical advisers your counselors can help you. But ultimately and I know a lot of people find this really really difficult. The decision is yours and a lot of people really feel desperate. They want somebody to guide them and that is to a large extent. Please make this decision on my behalf because I don't know what to do. And for most of us this is very new. You know we haven't faced this before. Make a decision about whether you take treatment that could do this and you're going to be on it for 10 years. I don't know what do I do!
Kellie Curtain [00:21:50] What a lot must do is go and Google.
Simone Sheridan [00:21:54] Yes.
Kellie Curtain [00:21:55] Which can be helpful but can also be very unhelpful.
Simone Sheridan [00:22:00] It can be really unhelpful and in the context of sex or experiencing sexual symptoms. If you start Googling you're going to end up somewhere potentially you never really aim to go and then you'll be dealing with those pop ups on your computer for a while.
Kellie Curtain [00:22:13] You've actually got a really useful tip.
Simone Sheridan [00:22:15] Yes so useful tip. I mean because googling is something people will do and and especially about sex if it feels uncomfortable to talk about. So one of the things that I even encourage health professionals to do if they're trying to find out more on the topic is to google the question they're interested in maybe it's sexuality and breast cancer but add in "PDF" into the Google search engine as well because when you add in PDF you actually get documents that have generally been published by organizations. So that's a really good way to find your fact sheets your information sheets. I always encourage people to see if they can find a date on it because we want to make sure that we're accessing recent information then you can print these fact sheets and you can actually take them into a health professional and talk through them.
Kellie Curtain [00:22:55] So we've talked about the physical. What about the emotional impact? Not wanting to either feel sexual. Not wanting sexual activity, loss of libido. How is that addressed? Alison did you experience that?
Alison Fraser [00:23:12] Yep yep. It just isn't terribly important in my life anymore.
Kellie Curtain [00:23:19] And in a relationship but I imagine that's fine for the first couple of months or whatever and then.
Alison Fraser [00:23:26] Depends on your relationship. The loss of libido was much more gradual and I cannot again personal circumstance. I cannot say it is not affected by age. All right I can't. It might not be but equally it might be. I think it probably is a bit you know. So I think it's a combination of things. If that's going to happen then you've got two ways of dealing with it. You can either accept that and continue in a loving relationship knowing that somebody else is pretty happy to be having sex and deal with it or you can desperately try to resurrect it. I haven't chosen to do the latter. I don't think that's my way of dealing with it. My way of dealing with it to say it's still fun. It'ss still close it's still intimate.
Simone Sheridan [00:24:20] I really like what you said before Allison about having looked beyond the garden variety of sex.
Simone Sheridan [00:24:25] I think this is something that I do with people who come to see me.
Alison Fraser [00:24:28] There's other things you can do!
Simone Sheridan [00:24:30] Let's step away from this traditional idea of sex as penetrative intercourse and actually focus on pleasure.
Alison Fraser [00:24:37] Yes!
Simone Sheridan [00:24:37] And focus on body exploration and actually sometimes when I meet with people who've had breast cancer and we talk about what's going on at home and I say to them what what sort of touch would you like at the moment? What would feel really good? And you I've had women go oh God I just love someone to play with my hair, stroke my back. And it's actually going. We have this very kind of narrow definition of sex but sex is so much broader than that sex is being intimate and sensual with somebody and that can be anything from having a close cuddle playing with someone's hair holding hands in a way that you both recognize is that what it means and.
Alison Fraser [00:25:15] All of those things I think are important and probably get squeezed out a bit in so-called normal.
Simone Sheridan [00:25:21] And I think the other thing that's really important that I wanted to talk about that I see happen is that people are worried that if they engage in a close intimate behavior like cuddling or having a hug or spooning in bed that they might send a message that they want something that they don't. If they haven't had that conversation with their partner they're worried about things then "oh but if I if I lay there and I give him a cuddle he's going to think that I want this. So I don't." So what I see then are couples that get more and more pushed apart and are scared of that physical intimacy. One because there's one partner going I don't want them to think that I want it because I know they don't. And the other partner going I don't want them to get that message either. And and that divide causes a bit of a rift in the relationship. So one of the therapies that I when I'm working with with couples is where one person's experienced breast cancer is sometimes actually to ban sex. And together we'll talk about it and we might actually say look sexy in the sense of sexual intercourse? It's off the cards. And we'll put a time limit on it if they'd like that. Three months, four months. So during that time if there's any intimate contact that happens there's this understanding between the two people that it's not going to lead there. So we can enjoy that pleasure. So instead of having to go Oh God am I getting the message that this is where I want things to go. I can go oh, that naked cuddle, that back rub. I'm just really enjoying it and I can relax and enjoy it.
Alison Fraser [00:26:42] And I think some men might find that actually lifts a little bit of pressure. My partner is the same age as me. He's not as dependable as he used to be either!
Kellie Curtain [00:26:56] But for those that are younger though?
Alison Fraser [00:26:59] If you can actually take some pleasure in other ways we've had more as lying in bed howling with laughter at the things that don't quite work. Humor still has to be one of your best assets. You know see the funny side of it. There will be a side... I promise yo there will be a funny side but you've got to actually be open to it. Yes and lots of difficult things can be dissolved literally by laughing. Yes. So it's a good way of getting through it. Of tone everything down. It's not the end of the world. You know these are things that you can explore other ways around. And it may actually surprise surprise get you to an occasionally happier place. It's quite possible to do that.
Kellie Curtain [00:27:44] So what about for people that are currently not in a relationship and they would like to. Whether it's abstinence for a while and then engage in sexual intimacy. How do they... can it return to normal?
Simone Sheridan [00:27:59] Can it return to normal? Oh look I think we always want everything to go back to what it was before. At the start of going this but. But things have changed. So much has changed. Your body's changed, your outlook on life, your experience of life has changed and so it's going to be I guess what we term as a new normal. It's going to be different. Doesn't necessarily need to be better or worse but it is going to be different. So I think there is this feeling sometimes of holding onto "I'm just waiting for it to go back to like it was". Where in actual fact getting to a point of acceptance and grieving that life but also accepting what is now is going to open you up to those new experiences and new explorations.
Alison Fraser [00:28:43] I think it's a really hard one. I think that is one that takes a lot of getting used to. Many people who've had cancer say I'm sick of people saying oh well you're okay now. You know I finished active treatment. My hair's grown back. Everything seems normal and I don't feel normal. And I can't speak for myself on that because I didn't have a particularly difficult transition with it but I've heard enough people who have and they don't feel normal. And quite naturally what they want to go back to is feeling the way they did before. Particularly if that was a happy time in their life. Nobody goes back none of us can go back. It doesn't matter what happens to us. We don't go back. But that's really hard to let go of if what you have now and this might be two three years after diagnosis seems not as good as what we had before. The really hard part seems to be, and it does seem to take time, and that's pretty difficult to face that people do gradually get to a position where other factors in their life start to balance things out a little bit better. But it's really hard and it's very hard to say to someone and particularly to their friends and relatives when you've had cancer it isn't six months or 12 months of chemo and it's not the two, five or even ten years of hormonal treatment. It's actually adjusting to something that will go on for the rest of your life. I always say that you've drawn a line in the sand and you can't go back to that. You've crossed the line and part of the crossing of the line is you know something bad can happen to you. We're all pretty hard wired to believe it never will. But now we know it can. And with that is the fear, "what if something bad happens again?" And that to me is one of the biggest things that you have to adjust to, is actually that change in what it is I'm afraid of and what I refuse to be afraid of. And that takes really quite some time for most people.
Kellie Curtain [00:30:47] I think what Allison said is fear is a very powerful emotion. So what would your recommendation be to anyone that's whether they've got vaginal dryness, whether they're getting increased urinary tract infections or have a weak bladder. Is it, for goodness sake go and talk to somebody?
Simone Sheridan [00:31:12] It really is. I think sometimes that the fear and shame especially around sex and personal issues can really hinder us seeking help. But one of the best things that we can do with shame is speak it. And it might be the first time you actually tell a close friend just to see how how that feels to actually say it. But please know that health professionals would love you to come and actually share those fears. And I have to say not all health professionals will necessarily know what to do without that. Some of them might say Oh gosh okay. Yes I'll look I'm not sure. And a good health professional will go and find out. But also if you don't get a good answer. And that's the thing to have don't necessarily feel like you have to talk to a certain role of person, like your oncologist. You might find you have a better relationship with your breast care nurse or you might find you have a really good relationship with your GP. I would trust your intuition and trust the personality of the person that you're talking to. Because we get a really good feeling for how things go. And if that person doesn't know the answers see if they can help you find out. And if they can't help you find out, can they point you to somebody else who might be able to? I guess this is where you do need to be like you were saying before a bit of an advocate for yourself and and try extend your confidence to this level of talking about a personal topic. But I think you'll find that once you do talk about it it does open up a world of ideas and potential solutions or potential support. And I think just even having that conversation can be incredibly relieving because someone else has heard that this is going on for you and it's not just you hiding this inside.
Kellie Curtain [00:32:48] And there's nothing quite like having the experience of someone else that's been through it I know BCNA online network has a private group called Let's talk about vaginas. Yeah. And I think there's lots of love and support and handy hints.
Alison Fraser [00:33:04] And a lot of people saying I've tried this and it worked or I tried this and it didn't work as well as something else. So there's a bit of user group going on there.
Kellie Curtain [00:33:12] Thank you both for sharing your thoughts with us and being upfront about sexual health. An episode made possible with thanks to Cancer Australia through the Australian Government's supporting women in rural areas diagnosed with breast cancer program. If you'd like more information about sexuality following breast cancer we have put some links to resources on our website BCNA.org.au. The opinions of our guests are welcome but not necessarily shared by BCNA. If you have any individual concerns please contact any health professionals. We hope you find our podcast series informative you can help others find us too by leaving us a rating and review on Apple Podcasts. Until next time, I'm Kellie Curtain. Thanks for being Upfront with us.