Cancer sweeps into your life like a hurricane, and you’re not the same person you were before treatment, and sometimes it’s tough to adjust to those changes, and even tougher to open up about it with people you love, with people you care about. And that’s where we need to talk about sexuality and intimacy and how it works through cancer so today you’re going to hear from Sage who has such an eloquent and down to earth way of working through things, you’re getting the best advice on the planet! Here are some things we cover today:
- Key distinction between sexuality and intimacy
- Separating sexuality from image
- Who is the best person to turn to speak about sex and intimacy
- Top online resources that can make a huge difference for you
- and much, much more!
Joe: Sage, it’s such a pleasure to meet you. Thank you for your time.
Sage: Absolutely. Thank you for having me. I appreciate it.
Joe: Cool, Sage. I think I really want to start with some definitions about talking about sexuality and intimacy. Are they the same thing?
Sage: Sexuality and intimacy are not the same thing. They are two different things, although, they might come together in a sexual and intimate relationship. Intimacy is really a human need. It’s about connectivity and desire to be in community or connectedness with someone, to feel safe and trusted in a relationship with someone. We might be intimate with our best friends. We might be intimate with our partner, our family, people from our faith communities. That intimacy, again, is about that connectivity and connection.
Where sexuality is really about how we define ourselves and parts of ourselves as humans. Yes, it might have to do with sexual activity, but really, it is up here in our brain. How do we define ourselves? What does sexuality look like? That might be, again, sexual activity including intercourse, but it might be touching hands, expressing sexual expression. They can also be strongly influenced by our spiritual backgrounds, our cultural backgrounds and guide us to what we feel comfortable with or not comfortable with. It might be in some cultures or faith practices, we keep our bodies very hidden or covered because that’s sacred. That expressing sexual expression would only be within the sanctity of a marriage/relationship that the body or the sexual acts would only be seen by that person.
Sexuality is freer that they may feel very comfortable expressing their sexuality more outwardly. Neither, again, right nor wrong, it’s all very individual. Sexuality, again, is just really again an individual expression.
Joe: Yes, Sage, that was beautifully put. Such a personal and, like you say, a sacred thing. That it’s not only critical to a relationship if you’re in that, but to also how you see yourself. I think that cancer can obscure that, so that not only it’s difficult for you to deal with it, but it’s also difficult to acknowledge it as a problem for yourself. What’s your perspective on that?
Sage: Yes. I think sometimes that also, that depending on where you live in America, the way sexuality is expressed is probably different and probably in other countries, as well. As well as the media, right? The media, at least in America, over sexualises everything. Things that are sexualised would be things like looking at the breasts or the butt or who has the most rock-solid body gets over sexualised. When that’s considered sexy or sexual, my goodness, that not only sets up 90 percent of us for failure, but then you add a cancer diagnosis, chemotherapy, and all the things that change our body image.
If sexuality is defined by image, it has such a profound impact when you get a cancer diagnosis because for some women, their femininity is attached to their breasts or their hair. Same with men, maybe it’s attached to their hair or to their physique. When the steroids are added, they gain 30 pounds in two months. That can have a tremendous toll on how they view themselves. On top of the fact that no just the body image changes that occur, but the sexual function issues that occur related to the treatments itself. For young women, they are thrown into medically induced menopause.
Those sexual side-effects can be tremendous and take a huge tole on the way they view their body as well as the way they feel about their body. The same with men as well. That they might notice that they’re having a harder time achieving or maintaining an erection or that their libidos change. They’re not as interested in being sexual. Maybe that’s because of the treatment itself, maybe it’s because of the side-effects. Like, fatigue, when you’re really tired, it’s no longer an excuse, “I’m tired or I’m too tired.” It’s an actual thing. Being tired can influence a person’s, again, sexual connection with themselves, or with a partner or partner.
I think when cancer throws in that kink, it isn’t just again the body image piece, sometimes we don’t always think about all those other side-effects. Like, dry mouth, fatigue, neuropathy, hair loss, weight gain, weight loss, the changes in body related to scars or port scars. Feed tubes, colostomy bags. There are so many things that physically affect the body that then can also psychologically affect the body when we start seeing our bodies as not whole, those negative messages. That certainly then can influence both sexual functions, as well as our sexuality connected to how I view myself as man or woman.
Joe: Yes, absolutely, Sage, that’s so true. If you’re diagnosed with cancer and you’re worried about how that’s going to affect your sex life, maybe you’re just beginning treatment, who do you talk to about it? Do you talk to your oncologist, or your nurse? What sort of questions should you ask?
Sage: Yes, good question. It’s a hard question to answer directly, so follow me through my indirect way. I think where you start is with someone who you trust on the medical team. That might be a nursing assistant, that might be a social worker. That might be the nurse or the physician assistant, it might be physician. I say, start with the person you trust the most and let that person guide you to the next right person, if they’re not the right person. I would start by just raising, just like we do when they say, “How are you feeling?” If they’re not asking you questions about your sexual health, or if they’re not asking your questions about your relationships, then it probably is on you to bring it up.
When they do their typical check-in of, how are you feeling? Have you noticed any new side-effects? That’s your opening with that question, to say, “Actually, I’ve had some concerns, I’ve noticed, for example, my libido has changed. I heard, I listened to this podcast and this woman said that my sexual function might be impacted. What can I expect?” You can also ask simple questions of, “I understand that my sexual function might be challenged or changed, what are some things I can do about that?”
What I want to prepare your listeners for is, it’s not uncommon for a healthcare professional to not have the answers. That’s’ not because they don’t care, but it’s because we haven’t done a good job educating our healthcare professionals to be able to thoroughly address these questions. They may say, “I don’t know.” It would be less likely for someone to be more dismissive, like, it doesn’t matter. That used to be language I would hear more often. Just focus on now, you don’t have to worry if it will come back later.
If you’re provider says that to you, I would suggest you ask for a different provider to talk to. Not only do you need to feel valid and valued that your relationships and your sexual body is important, but the most proactive you are, the better outcomes you’re going to have.
Just like when we say, go exercise during treatment to keep your body strong, the same thing goes for your sexual health. The more proactive you can be on keeping your sexual body as sound and strong as possible, the better your outcome is going to be when you complete treatment, or if you have advanced disease, the more you’re going to be able to navigate some of those ongoing and continuous changes.
Joe: Yes, that makes so much sense, Sage. I know you touched on trust and it’s so important, let alone with your medical team, but obviously with your partner. It’s so crucial talking with each other. How do you bring it up with your partner? How do you talk about it?
Sage: If you’re in a current relationship, different than if you are going to be in a relationship after your diagnosis. If you’re in a current relationship, it depends on how you two communicate to begin with. Cancer doesn’t often strengthen relationships, sometimes there can be a little bit of a honeymoon period and people rally. Often times, how you communicated before cancer is how you’re going to be communicating during cancer. It does provide you an opportunity to think differently about how you want to communicate.
If you are more of the type that might communicate, for example, via text or email or writing notes to each other or bookmarking a page to say, hey, in your spare time, can you read this? Then I would say, at this moment, continue using that style. You could say, for example, in an email, I noticed that my body is changing and I’m feeling a little insecure about it. I want you to know that I still find you attractive, but my desires have changed. I would love to have a conversation with you about it.
You can find maybe a little bit more of an easy open to begin the conversation via email. Then schedule a time to sit down and talk about it. If you don’t schedule the time, one, it’s not going to happen. Two, having that sacred time carved out where you know that that conversation is not going to be interrupted is really important. If you have kids, it needs to be after their bed. Or go out on a date and have the conversation. One of the key things I say to people is, use a fact, a belief, a feeling, and then give them an option to change. For example, I’ll use a young woman with breast cancer example. Ever since my diagnosis, you stopped touching me. I believe it’s because you find me unattractive. It makes me feel sad that cancer has changed this part of our relationship.
Often times, with couples, we might drop those bombs on each other. You don’t touch me anymore, it’s because you don’t think I’m attractive. Now, cancer has screwed everything up. If we can do a better job at saying what we need from our partner, then they have the ability to respond to that information. The next thing I would say is, then say, I need you when I come in the door to come and embrace me, give me a kiss, or initiate sexual affection or initiate kissing or holding me. That will help me feel wanted and desired.
You can also say things like, I learned today that my cancer treatments are going to affect my interest in sex. That doesn’t mean I don’t find your attractive. I’m still very interested in you. I don’t want that to change. I’m going to need you to be more proactive on initiating because my body is not going to initiate it for us anymore. Creating that open dialogue is important. I think, again, all of it has to do with how we communicate. That if there’s loving intention behind it, if there’s the intention of wanting to have a dialogue and be honest, then it gives our partners the ability to respond and have their own feelings.
We certainly can flip it back on them and say, “How has cancer made you feel?” Maybe their world has been turned upside down too and our bodies have been changed. That changes the way we interact with our bodies. Again, thinking about how we can use a fact, a belief, a feeling and then an action can help propel better conversations. If you’re dating and you’re trying to figure out how the heck you talk about this, I would say, first, trust is essential. There are certain people who wear cancer shirts on their first date and that’s because they’re advocates and that’s all over their cars.
It’s on their websites and their Facebook pages, but the majority of people have cancer more as a backseat, not their front seat. In those circumstances, I would say, before you disclose and talk about some of the changes, that you just let them get to know you. Let them get to know who you are because who you are is not your cancer, that’s certainly part of your story, just like your job, or your school, or your family. Incorporating that as part of your story once you’ve had a few dates, to establish that you actually like this person and are beginning to have trust would be important.
Joe: Yes, that’s fantastic. I love your fact, belief, feeling, action framework because it keeps your grounded and it keeps you in check because your emotions are running wild. You’re not going off-track.
Sage: Yes, really, that fact, belief, feeling, action can be used in any kind of communication. We can use it with our doctors, we can use it with our friends, when we’re feeling like they’re not being the support we need. We can use it in other types of conversations with our partner or partners. It’s a good framework.
Joe: Yes, what about talking about support? What if you’re not receiving the support you want from people in your life? Maybe your friends or family, what’s your advice on that from?
Sage: Yes, so similar framework, fact, belief, feeling, and action. I think one of the things we need to remember about both our partners and our family members, and our friends is unless they’ve had their own personal experience with cancer, and even then, their own personal experience is different than your unique experience. Often times, people’s lack of support is mostly done out of ignorance, not to try to be hurtful or hide. If you notice that your friends are distancing, it may be that they just don’t know how to talk to you about it. Or they don’t know how to bring it up.
Or they’re scared they’re going to make you feel uncomfortable. Initiating that conversation could be as easy as, “Ever since my cancer diagnosis, I noticed that you don’t call as often, I miss hearing from you. We don’t have to talk about my cancer, I’d just love to hear from you and talk about how your kids are, how your job is.” Initiate them to engage. You can also say, if you don’t know what to ask me, I can guide you on that. Or, if talking about cancer makes you uncomfortable, we can talk about other stuff.
Most of the time, they’ll say, “I just didn’t know what to say and I don’t want to make you feel bad. I don’t want to complain about my stuff because you have so much more going on.” Again, normalising, I guess I have cancer going on but I’m still human and I’ve a life and other things and I’m understanding that you have a life, too. Giving, again, that ability to share is important by giving them permission. Often times, with our partners or our friends, it just starts with giving them permission to not know what to say and that’s okay. If you hear them saying things that are unhelpful, which unfortunately happens a lot, like, everything happens for a reason or god has a plan or you’re so strong, if anyone can do it, you can.
It’s okay also to say, I know that’s coming from a place of love, but that’s not helpful to me. What I need from you, is just for you to listen. If, for example, they’re spiritual life is important, certainly pray for you, but let’s not bring god into the conversation with cancer. You can set some boundaries. Or, if that’s helpful to you, ask for more. That’s everybody. You need to know what helps you and what doesn’t.
Joe: Yes, that’s fantastic, Sage. I know you mentioned that if perhaps after treatment you’re looking to meet someone new, how do you talk about it when you just start dating, perhaps?
Sage: I think when you’re starting to date and especially here at least for, again, I think it depends on the generation in which you’re diagnosed. There are 65-year-olds who are dating, and they may or may not be using the apps. I think if you’re 65 and dating, there is an expectation that you’ve lived a life that probably has had some traumas in it, like a cancer diagnosis. Dating and disclosing that in your 60s is going to be very different than dating and disclosing that in your 20s and 30s.
Again, I think when you look at how do you being to date again, or come out after your cancer diagnosis, certainly, you can try to meet people. Like if you really want to meet another survivor, go to some support groups of people your own ages, right, connect on different social media sites. You can connect to people on Stupid Cancer, or other young adult focused cancer websites. Really, I would say, if you’re just looking to data again, I would not say bring cancer into your dating profile because you are not your cancer. It’s really important.
Unless you’re actively in treatment and it’s hard to hide the appearance, issues related to the cancer diagnosis, then probably you’re going to need to put somewhere in your profile or in your description, currently kicking cancer’s ass or something. That it’s got to have something that shows your strength. Again, I think that’s what you need to be really comfortable with. I always tell people, get really comfortable with your story first, go and practice disclosing to your best friend or to your sister or brother who can say, “That was horrible, do it over again.” You can feel confident because the more confident you are in your disclosure, the more confident you are in your story about your diagnosis, because most likely when you’re on that date, nowadays, enough people have had cancer to know that there are going to be some long-term effects of that, right? We’re starting to see survivorship so many more years later. They might say, “Wow, that’s amazing, how does that impact your life now?”
That might be the time where you say, “I don’t really know, I’m still figuring that out. I really haven’t figured out my body yet but I’m working on it.” Or fertility might be an issue, but we’re not sure yet. That would be your opportunity to disclose some of the things that you might need to disclose at some point. Being confident, like, yes, I had cancer, I was treated three years ago, I have clean scans, I see my doctor every six months, or every year, I feel great.
I’m back running. Whatever that might be, or you flip it to the things you are now is going to be important. Again, if you’re in treatment, flip it to the things that you’re doing really well and make sure that that person feels relaxed. If you’re insecure about it, they’re going to either think you’re hiding something or that you’re not confident that you’re doing well.
Joe: Yes, I love this advice, Sage. You’re keeping it honest, but at the same time, it’s not front and centre.
Sage: Yes. Again, you need to adapt your own personality. I joke about the people wearing cancer sucks shirts on dates, but I do have some of my young adults who do. That’s an okay thing. They slap those bumper stickers on people’s cars as they go on their date. Use your own unique style. It would be important to think about. The other piece of this is social media has really changed anonymity. If you disclose on Facebook or on Twitter or on any other social media site that you have a cancer diagnosis, even if it’s just a picture of you bald, you need to be prepared to speak to that.
Nowadays, people will Facebook stalk you four days before you see them on a date. Be mindful that what you put out there is going to come back. If you don’t want cancer to be part of your profile, right, not even your written profile, but your internet world profile, you should be really thoughtful about what it is you’re putting out there in the social media world. They will find it.
Joe: Yes, exactly, that is so true, Sage. Talking about survivorship, there is this expectation that you’re just going to bounce back to life. That’s not always the case, is it?
Sage: No, not at all. I haven’t yet met somebody that bounces back to life after their treatment. I think the challenge with treatments is we do now a really good job at treating the cancer and making sure that we give you the highest survival rate possible. That means we’re treating you with some pretty heavy-duty stuff that have ongoing side-effects. As you get to the finish, if you’re taking chemotherapy, the finish of chemotherapy, you may be rejoicing that you’re done, but that chemical stuff still has to get all the way out of your body. Then there are all of those other secondary effects of late effects.
For some people, it has cardiovascular issues, that they they’re followed by that might impact, again, their ability to get back to running like they used to. Most importantly, though, many people are okay with putting the sexual components like the actual act of sex on hold during treatment. There is this anticipation of, okay, once treatment is done, we’re going to get back to normal and we’re going to start having sex again, or I’m going to have sex with myself or whatever my normal patterns were before. They suddenly become very keenly aware that their body is not where their brain is.
That their brain may want to be ready and roaring, but their body is fatigued and doesn’t feel good and may have some dryness or some other sexual complications that take time to heal. Sometimes it’s time and sometimes it’s using techniques to help heal it, that you’re going to have to do for life. I think the emotional component of that, that comes up for a lot of survivors, the awareness of pull up your boot straps and get through the treatment. Then the reality that, oh my gosh, what just happened? It hits you, and as you’re done pulling up your bootstraps, and you’re ready to go back into life, your body isn’t ready yet. That grief of how cancer didn’t just take those nine months of your life, now it’s taking another year for that healing.
Often times, I’ll tell people, when you hear that you’re going to be done with treatment, celebrate that but be gracious with yourself for the next year. It really takes about a year from when the time treatment ends until a year at that point, where you start to feel like, I’m some semblance of myself again. That semblance of yourself may look different because the other part of survivorship is maybe your priorities or values have shifted a little bit, even if you were single, maybe the person you’re attracted to after your cancer diagnosis is different than the kind of person you were attracted to prior, just based on your experiences and exposure. That’s okay too. I think being gracious with yourself and giving space for both the grief and also for the redefining of today I might have a lot of energy, so I’m going to do what I can. Tomorrow, I may be totally gawked out and that’s okay.
Joe: Yes, that’s such fantastic advice, Sage, because I think sometimes we have such high expectations of ourselves. I’ve spoken to a lot of folks, yes, they talk about if you finish treatment, you expect to bounce back to life and do the things you’ve always done. That really isn’t how it works out and you have to redefine how you see yourself, how you see your everyday reality and how you see your future.
Sage: Yes, and if you’re in a partnership, it often times is the mistake of the partner not ill-intended, just ill-informed. That when treatment is done, within a month, you’re going to be back to normal and able to take care of the kids and back to doing laundry and back to running around, and all of those things. That’s just not possible. Including your partner in some of those conversations with the doctor about what to expect in healing would probably be important, too, because that’s an opportunity for them to ask questions. Like, well, how long until? When will she be back or when will he be back? It also gives you a platform to say: How long until I’ll have energy again, so that you can ask the questions that maybe he or she needs to hear to better be equipped for expectations that are realistic.
Joe: Yes, absolutely. Sage, you have so many fantastic support groups at your centre, so what are some of those things that you see are working, that are helping people connect, help people during treatment and beyond?
Sage: Yes, I think some of the things that we focus on, we have disease specific support groups. You can go to a support group that crosses all ages and unites you from a diagnosis. All colon cancer survivors can come together. Sometimes that’s stage one to stage four, but the unity and connectivity that happens because their shared experiences and the impact of the diagnosis is so similar, that there’s great strength in that community.
Certainly, support groups are not for everyone. We know they can improve the quality of life for people, for people who tend to be more people-people and want to connect to people. For people who rejuvenate more internally, that may not be a place for you. Maybe you want to think about taking a mindfulness class or taking an exercise class for survivors that doesn’t necessarily require you to share feelings but still creates that sense of connectivity and community. At our centre, we really look at mind/body/spirit options, both from a support group around disease but then also, mindfulness based stress reduction techniques, education series on managing some of the side-effects of treatment, so that, again, you might go to a session on chemo-brain and being around other people hearing their stories, gosh, you walk away thinking, “I’m not as bad as I thought I was, or I’m not going crazy, that’s actually a real thing.”
That’s the importance of connecting to other people, it’s the validity that one feels when you hear that you’re not alone in that, that you’re not the only one that can’t remember where you put your keys, or you’re not the only one that is struggling with figuring out how to feel good in your body again. There is a great sense of relief experienced when that can be done. Again, whether that’s a support group or just joining another thing. The other benefits we’ve seen, things like our fitness classes, is not just about the physical improvement and awareness of their own bodies, but also, again, that encouragement, that buddy-system that happens around, hey, I didn’t see you at yoga on Monday, what happened? That shared experience of encouraging one another to take good care of their bodies while they’re in treatment, as well as when they’re after treatment, as well as that accountability around, are you okay?
Is there anything you need? That can create some of that connection between people. Certainly, there are people who live in remote areas that can’t get to a face-to-face group or can’t get to a class. I would encourage the listeners that are in more remote areas to find online connections. The only thing I say about online connections, if you’re going to find a support group, I would really advocate, and I am bias just because I’m a clinician, that you find a group that is facilitated by a clinician.
Moderated by a professional that has a license because often times, what can happen, especially on the web, the lines of the interweb lead to all kinds of openness and some people will get on there just to complain or share really scary stories. If there isn’t somebody who knows how to redirect that conversation and make sure that everybody feels included in the conversation, it can be rather unhelpful over helpful. Then finding things, even for me, I’m a big fitness guru, so I think even just as sexual bodies, movement is critical for our bodies. Using online apps that keep you moving.
It doesn’t have to be going to the gym. It can be literally tracking your steps and having a realistic goal for yourself that day, that if you’re feeling more depressed or if you’re feeling more fatigued, set a goal of a thousand steps, can you get that done? Have somebody maybe in your family or somebody in your treatment that can be that accountability buddy, that can send you a text and just encourage you to get up and walk. That also has a huge impact on the way you think about yourself and the way you feel about yourself.
Joe: Yes, that’s fantastic, Sage. What are some of the best resources online in your opinion that talk about sexuality and intimacy around cancer?
Sage: I wish there were more. There aren’t a lot of online resources. I would encourage you to Google, there’s probably a lot you can find connected to specific disease. Living Beyond Breast Cancer, and Young Survivor Coalition, those are two breast cancer organisations that have great information on their websites. The National Cancer Institute in the states has as great section on sexuality and cancer, both for professionals, like myself, to read up, like, what do I need to know about side-effects, but also for patients and families. That’s an easy place to start, as well. There is a website: cancer-network.org. That’s for the LGBT community. I think that’s a great online resource.
Stupid Cancer has some information on their website. Now, ASCO, the American Society for Clinical Oncology, partnered with the Canadian ASCO, and together we created some guidelines on addressing and assessing sexual health in cancer. Although, that is written for professionals, we wrote it to put in pocket books of physicians and nurses, what is valuable about that is, if you’re a patient, you can go on and you’ll at least get some of the information that is normalising, like, I had no idea that my libido was going to be affected or I didn’t know I was going to have vaginal dryness. That it will give you some of the information that you might need.
Then a nurse named Anne Katz, she’s done some great books, both for men and women, one called: Woman Cancer Sex. The other one: Man Cancer Sex. Are also some great books. I also think, again, depending on your own experiences coming into cancer, and I should have said this earlier, if you have any kind of sexual trauma in your past, I think it’s really important to honor that. If you can, tell someone because unintentionally as healthcare providers, we don’t know that history unless you share it. We may touch you in ways that we view as clinical but may actually be emotionally harming you.
If there is any kind of sexual trauma in your life, that could be from unwanted touch to molestation, to a rape, it’s really important for us as providers to know that, so we can do a better job taking care of you through your experience. Then the other piece I would say is, depending on your faith background, your spiritual practices, that your spiritual leaders might be good resources for you on navigating, how do I manage this? What about my changing body can I do without the context of my faith practice.
For example, as a certified sex therapist, I prescribe masturbation, not for the goal or orgasm, for rehabilitation. If masturbation is not within the religious of culture confines of your practice, I personally, as a sex therapist, would work with your faith leader to talk about what would work in order to preserve this, so that when they are in a sexual relationship, they can go into that fully healthy and knowing their body. Again, I think some of that may be on online but a lot of that is just talking and sharing.
The other piece I would say for any of the women listening, tell the floor therapist, and men too, if you have incontinence issues related to your treatment for prostate cancer or bladder cancer or colon cancer. Floor therapists are physical therapists that specialise in just the pelvic floor area. They do amazing work and are tremendous resource to just strengthen that pelvic floor muscle that’s often attributed to sexual pain, or discomfort, as well as incontinence.
Joe: Well, thank you so much, Sage. Thanks so much for all your time and your advice. Thank you for what you do, this is crucial.
Sage: Absolutely. Thanks for having me. I look forward to being back again if other questions come up.
Joe: Absolutely, thanks so much.
Sage: Alright, you’re welcome, take care.