Sexual health after treatment: Dr. Bober (2021)

Manju George 0:01
Hello Everyone, I’m Manju George, the Scientific Director of COLONTOWN. We welcome you all to DocTalks. Today we have with us Dr. Sharon Bober. She’s the Director of the Sexual Health Program at the Dana Farber Cancer Institute, and she’s an Assistant Professor of Psychiatry at Harvard Medical School, and her work is mainly focused on sexual health in patients affected with cancer. We are really thrilled to have you with us. Some of you might have listened to her talk on Trevor’s Man Up To Cancer podcast where she mostly dealt with problems in men. So here we have the opportunity to have her talk to us about sexual health in women following colorectal cancer treatment. Thank you so much, and welcome!

Dr. Sharon Bober 0:46
Well thank you. It’s really lovely to be here with you this afternoon and to talk with all of you about this topic, which I think really needs more attention. So, I am just going to get started. And on that note, as often, people hear me say whenever I give a talk, sexual health after cancer is really often like the elephant in the room for so many people because the truth is, it’s an important topic. It’s a quality of life issue that affects so many people after cancer, and especially after colorectal cancer, and yet it really gets very little attention. So, one of the things that we do know is that most colorectal cancer patients struggle with changes in sexual health, and that this is probably one of the most common and enduring challenges related to treatment. It’s often one of the first aspects of normal life that just kind of gets disrupted. And more importantly, or as importantly, we know that most people say they simply weren’t prepared for dealing with a lot of these changes, and that is really where I come into it. So, I think it’s important to make sure that we step back together and really appreciate that sexual health is a very broad category. It means a lot of different things to different people, but, I think we can agree, it is a very central aspect of human experience that really is with us across the lifespan, and it is most importantly not just a physical experience. It is not just about whether you are having sexual intercourse, it is as much about how you feel about yourself, your thoughts and your beliefs and your relationships as it is about anything specifically physical. We also know that it is really influenced by so many different factors. There are cultural expectations, social expectations, religious and familial expectations. It is not just one thing to one person that’s across the board. And most importantly, we really need to think about people’s sexual health and context. Everybody comes to this experience with a very different past experience, with expectations for the future. And I think it’s really important to evaluate where everyone is based on that broader context. So, really from that point of view, the fact is, sexual health is really sort of at the center of all of these different experiences and although we know that there are different meanings and levels of importance to different people, I really want to emphasize the point that if there is something that is different or changed for you, which is bothersome, which is distressing, then you deserve to have that addressed. And I think that this is really the place where I start, which is to say that, if there are changes in sexual function that are not bothersome, you don’t need to feel compelled to do anything about it. But if there is something that is different that is distressing, even though other folks might not be asking about it, it doesn’t mean that it does not deserve attention. So on that note, we also know that every type of treatment that we bring to bear to treat colorectal cancer can have a direct effect on the body and on sexual function. So that’s not just surgery, just radiation, chemotherapy. The whole gamut is really what brings us to potential changes. And, sometimes people say to me, well, of all of the things to think about, really, is sexual health the most important thing? And the fact is, although it may be not the most important thing, one, it’s important, but two, it never gets to the top of the list right? And what we also know is that when there are significant disruptions or changes in sexual function, it simply affects quality of life. And I think the point I want to convey here is that it’s not just about people feeling more anxious or distressed, that it can impact self esteem and relationships, but that these issues don’t self-resolve. So unlike other side effects of treatment, sexual symptoms really, unfortunately, can get worse over time, and they very rarely get better by themselves. So on that note, I would say the good news is that when sexual function is back on track, there are a lot of benefits to that, besides the fact that at a physical level, things might feel good in terms of sexual activity, good sexual health is also kind of tracked with release of stress, lower anxiety, sense of connection, and really recovery in survivorship. So I think there are a lot of reasons why we need to address this issue. What I would say is that given how ubiquitous the problems are, it is really notable that there is such a gap in care.

Dr. Sharon Bober 5:46
Sexual health is really important to patients and survivors. That’s clear from every survey that’s done, but they also tell us that they are very unlikely to initiate this conversation. People are uncomfortable about making their doctors uncomfortable. There’s often a belief that it’s actually up to the team, the doctor, to start the conversation. And there’s worry that if you bring it up, people are going to think, it’s either not really that important, or there’s something wrong with me, or that simply there isn’t something that we can do about it. So there’s a lot of unmet need there and I want to point out that when we do surveys with providers, which we have many now, the barriers are often very similar. Clinicians get very little training in this. Most doctors will tell you, nobody ever taught them how to talk about sex or what to do if there’s a sexual problem, so they have a lack of knowledge or experience. Often, they then feel like it’s not their responsibility. We always hear that there’s never enough time anyway to talk about everything else. So it easily sort of fits the bill of, “Well, we just can’t get to it”. But honestly, clinicians often feel uncomfortable, and we know that we have to create more resources for clinicians, because if someone sort of brings up a topic, we sort of think about that as the Pandora’s box, like, “why would I bring something up if I’m not sure what to say?”. So I want to just make a quick comment before we dive into the details that you know, it is a funny thing that we live in a culture that’s really saturated with sex. I mean, you can’t look at a TV show or a commercial or a movie without all kinds of graphic images about sexuality, but I want to point out they’re acting. They’re not real sex. It’s not a real conversation about real sexuality, and there is this confusion about who’s supposed to initiate that discussion. And again, I think there’s a fair amount of either misinformation or assumptions get made. So if a patient is, the age of my parents, or somebody is a different culture or religious background, or if somebody is single or widowed, or, from my perspective, not partnered, I don’t need to worry about it, because they may not be sexually active, lots of assumptions that get made, many of which, or most of which are not true.

Dr. Sharon Bober 8:10
So, I think the goal then is that I just want to start out by saying I really think we have to be proactive about identifying the problems and identifying solutions. I think the goal of sexual rehabilitation or sexual recovery after cancer is that we need to have people identify the specific challenges in whatever key domains have been disrupted. We need to take a team approach. We really need to think about who are the different experts or providers that need to sort of weigh in on the issues. And people need an action plan. People need to have a specific goal of what to do. So, I want to just give you a quick picture of the framework that we use at the Dana Farber. This is really a biopsychosocial model which understands that, again, cancer-related sexual problems are really at that intersection between psychology and biology and relationships, and appreciating that all the sociocultural factors play a role. And this is really our starting point for working with people to figure out in a collaborative way, where are things, where do things get off track, and what’s our action plan for them to get back on track. So, thinking about women and colorectal cancer, I want to just say that I think it’s a very important starting point that women are both educated and familiar with how to address menopause, managing menopause, and very specifically, the genitourinary symptoms and sort of specifically vaginal health. So thinking very specifically, what happens when any woman undergoes any type of treatment that either puts her into menopause at an age where it’s before natural menopause or intensifies menopausal symptoms, what we’re talking about is a very dramatic depletion of estrogen, and that when we think about the genitourinary symptoms, that very specifically has a big impact on the genital or vaginal tissue. So very specifically, in terms of vaginal changes, we know that there is a decreased sort of sense of blood supply. We know that from surgery,women could lose vaginal length. We know that we lose lubrication, natural moisture to that genital tissue, and when that happens, we also lose stretch or elasticity. As you can imagine, that has a pretty big impact, and women have vulvar changes. The vulva loses collagen and tissue. We also lose about 50% of our testosterone when we lose ovarian function. I’m not going to talk a lot about it, but I’ll also comment that when women have a treatment-induced menopause, there are often urinary symptoms related to the lack of estrogen that often people don’t even make the connection. So whether that’s changes in urgency or recurrent infection, often, interestingly, theurinary changes also have to do with estrogen deprivation. So, all of that means that there can certainly be discomfort or pain with sexual activity. When there is dryness, those pelvic floor muscles, there’s essentially a basket weave of musculature that form a sling at the bottom of the pelvic floor, which not just lose stretch, but very specifically, can become what we call hypertonic, meaning that those pelvic floor muscles can get very tight in anticipation of any kind of discomfort, and when we sort of get into that secondary reflex with those pelvic floor muscles, women can develop something called vaginismus, meaning that if you are thinking about any kind of sexual activity which will end up in some painful or uncomfortable feelings,often those pelvic floor muscles self-guard and immediately clench up or tense up. And when that happens, we both have a physical and an emotional experience of understandable anxiety or fear. We want to avoid that situation.

Dr. Sharon Bober 12:15
And often women talk about decreased desire. We know decreased desire is a major issue after colorectal cancer. Often, when we start to peel back the layers, we know that when somebody is having, or has had painful intercourse or painful sexual activity it’s very closely and quickly related to a lack of desire. So that being said again, as a starting point, I think all women need to be really familiar with how to restore moisture and manage dryness. I think women get very little detailed education about vaginal dryness. Most women hear people say, use a lubricant. I will just say that is not adequate. A lubricant just stays on the surface of the tissue to make the tissue sort of slick or reduce friction with sexual activity, but that doesn’t hold water in the tissue. So anybody who’s dealing with any kind of significant vaginal dryness really needs to get educated about vaginal moisturizers. Vaginal moisturizers hold water in that tissue over time. There are different categories of vaginal moisturizers. Typically we think of over the counter, non-hormonal vaginal moisturizers. There are also prescription based vaginal moisturizers, typically estrogen or DHEA, and those are delivered in different types of formulations: Might be a small tablet that you insert, a ring, a cream, that would be something that you could talk with your gynecologist or a nurse practitioner about. But the most important piece here is that you need to moisturize if you’re having significant dryness. Vaginal dryness does not go away by itself, and we know that there is an important regimen around how to do that. So certainly, at the Dana Farber, we talk a lot about using moisturizers, typically two to four times a week if you have a lot of dryness, before you go to bed at night, so the moisture can soak into that tissue, and to consider, in addition, using something like a lubricant with sexual activity, or something like coconut oil, which you can use in the vulva, the external tissue, on a regular basis. So I would say moisturizing is a really important piece of dealing with any kind of pain or discomfort.

Dr. Sharon Bober 14:34
We also know that women have to get educated about the pelvic floor. I would say, if anything, people hear about vaginal dryness, and do not hear much about the pelvic floor. We know that again, that sling of musculature is very reactive to emotional stimuli. We also know that that those pelvic floor muscles can become atrophied, can become clenched or tight all the time, and so what we really do, is work very closely with our pelvic floor physical therapists, with our urogynecologists, to help women have a good piece of recovery and rehab around the pelvic floor. So that may be learning how to relax the pelvic floor, that may be learning how to tone those muscles and regain flexibility so that they’re relaxed when you want them to be relaxed and toned when you need them to be toned. We also do a lot of work around the mechanics of that. So I will say, for example, lots of women go through pelvic radiation, get handed a set of vaginal dilators in order to stretch that tissue. But there’s very little teaching about that. There’s very little, if any, follow up about how to use a dilator. Most women never use the dilators over time. So we know vaginal dilators work, but we also know that it’s just as important to be able to give women the support and the coaching they need for how to use those dilators over time. We also know that sometimes dilators are not enough, and it’s important to be able to do some manual therapy. We are incredibly fortunate in the part of the country where I live to have amazing pelvic floor physical therapists. It’s interesting now post-pandemic, or I should say mid-pandemic, and hopefully post-pandemic soon, there has now been the couple of good pieces that come out of this, including the telehealth revolution and that there are now pelvic floor physical therapists who are working with women on the internet, in terms of being able to do coaching and give people feedback about how to do some of the home based exercises to relax the pelvic floor. So, really important tool in our tool kit for what we do around recovery after colorectal cancer. And I would HIGHLY invite women to get educated about this pelvic floor work. I will also say that we talk a lot about supporting blood flow for vaginal health. We talk about this with men all the time. We put men on PDE5 inhibitors, Viagra, Cialis, etc. We talk about penile injection therapy in order to get blood flow to that tissue. We really don’t talk about that for women, and it is just as important. We need to get exercise to that tissue. We need to get nerves firing and blood flowing. So, we use a lot of vibrators. We talk with women about the importance of self touch, again, with or without a partner, whether you consider yourself sexually active or not, from the point of view of enhancing vaginal health. It’s important to get blood flow into that tissue. And I would say that any kind of clitoral stimulation where you have good sensation, regardless of whether you have an orgasm or not, is going to help get blood flow to that tissue, which is really healthy for the tissue.

Dr. Sharon Bober 17:43
So I’m going to switch gears to talking a little bit about body image, but I just want to say, from the mechanical point of view in terms of vaginal health, certainly, if people have questions about that, we can talk about that later, but it’s a really important starting point. And the reason I start there is because, again, if anybody is having pain or discomfort with any kind of sexual activity, we know there’s going to be a loss of desire. We know that’s not going to be something that women want to do and I think it’s important to start with that first. So given all of that, I also know that when we gothrough any kind of major body alterations, when we go through any kind of significant changes where our body is not the same body that it used to be, it is not intuitive to be in the body in a way that doesn’t feel panicky or that doesn’t make you feel uncomfortable sometimes. I think it’s actually often not intuitive how to be in the body without feeling nervous. And I think that especially when we go through any kind of significant change, like having an ostomy, there’s a whole other layer that comes to worry about the other person’s reactions. We worry whether that’s with a long time partner, or whether that’s somebody that you’re just dating. Concern about how you manage this whole thing, because it’s going to sound funny and there are going to be leaks, or there are going to be odors, or all the above. And what do I do about that? It is embarrassing. It feels shameful at times. It can feel scary, and honestly, it’s hard to talk about it again if people don’t have encouragement or coaching. Sometimes it feels hard to know what language to use or where to start. I will say that some couples have great communication to begin with. Some couples never communicate about any of this to begin with. And so there’s not a background or a basis for how to talk about some of this.

Dr. Sharon Bober 19:38
I appreciate that, again, in terms of a starting point, I think people need to have education and strategies for how to manage this. I’m guessing that there are lots of women in this group who become quite expert at this, and could probably share a lot of those tips and strategies. Certainly, there are the obvious ones about wanting to empty the pouch before you’re sexually active, and not having a big meal before you get started, wanting to just feel that the pouch is secure, and learning about how to deodorize or the basics in terms of that sort of way. I also think one of the things that’s kind of amazing in the past 10 years is that there’s been this explosion of interest from women who’ve gone through this experience to say, wait a minute, I need to make things that are going to work for me, because there aren’t things that are already out there. So, we know that, for example, we used to talk about, well, use camouflage, do something to cover up if you’re not feeling comfortable, that’s okay. This is a picture of an amazing device. I don’t know if other people have already seen this. This group of design students in the Netherlands, came up with this kind of silicone cover that was used, sort of thinking about it almost as of a passion pouch, where if you just want to cover up your stoma during the time that you’re sexually active, or wanting to have some intimacy with a partner and feeling less self conscious. This won an award for something that you can use just to feel more comfortable in the moment. What I think is important is that women don’t need to feel ashamed or embarrassed if you want to use some camouflage in some way. If you want to feel like covering up is going to be better than feeling comfortable, then cover up. I think the point I would want to make is the focus is on what is pleasurable. The focus has to be on what feels comfortable. And everybody has to figure out for herself what that’s going to look like. There are also really beautiful panties, or underwear. There are crotchless, but you can keep the panties on so you can have coverage for the pouch. I think the point here is that it’s not about conforming to something you see on TV or something you see in a movie, but it’s about figuring out what’s going to make you feel comfortable for you, and really accessing the amazing new amounts of resources that are already out there.

Dr. Sharon Bober 22:05
So on that note, when I think about where to start, I think the focus has to be on feeling strong and feeling healthy. I think the focus has to be on recognizing that we are not defined by any one part of our body. Our sexuality in our sense of our self as a sexual being, is not defined by any one body part or any one aspect of physicality, and that you don’t have to love every part of your body in order to be able to give and receive pleasure. So I recognize that when I say that that’s a little bit of a departure from what we commonly hear in popular culture. People say, “Oh, you have to love your body. You have to love yourself before you can be with somebody else”. What I would argue is that lots of women don’t love every part of their body, and that’s okay. We can still feel capable, and we can feel comfortable of again, giving and receiving pleasure, even if we are not equally comfortable with all parts of our body. I do think it’s important to figure out how you can get active in your body, just to remind yourself that your body has gotten you where you are today. So, whether that’s doing something completely non sexual, whether that’s dancing or yoga or hiking, but feeling active in your body, remind yourself that you can still be in your body comfortably. It’s actually a really important part of sexuality, just reconnecting with sensation and getting curious about what it feels like to be in your body without feeling panicky. Again, really important starting point.

Dr. Sharon Bober 23:38
And I think if the goal is really to create opportunities to notice and get curious about sensation and pleasure, rather than waiting, but actually being active in that way, it enhances our confidence. It enhances our sense of confidence that this is an aspect of our life that we can take back and that we can have a new chapter. So it really is a new chapter. And I think that I always talk about this notion of the need to accept the loss, or, I should say, grieve the loss, acknowledge the loss, before we accept the fact that we can also move forward. And I say that because sometimes people don’t want to talk about loss. It’s hard to talk about the things that we miss and I am quite sure that when we don’t acknowledge the loss, then it also is a lot of energy that goes into pretending everything is the same. And I want to acknowledge that everything is not the same, and we can still have significant pleasure. It may not be the way that it was, and you can still have a new chapter in which sexuality is a very satisfying part of your life. I think that these things are not mutually exclusive. So accepting change and accepting loss does not mean that we can’t still have pleasure in good sex, but appreciating that we can embrace both of those allows us to embrace, really, I would say, chart a new course or a new chapter for what sexuality is going to look like on the other side of a cancer diagnosis and treatment. So on that note, again, we have to take our time to figure out what that looks like. People are going to have different pace and different focus. I think this is where everyone needs to figure out what is a goal for herself, what is their hope or wish or action that they want to put into place and appreciating that this is now time to expand the repertoire. This may be an opportunity to have a different way of communicating. This may be an opportunity to have a more expansive view of what sexuality looks like. This may be a time to recognize that foreplay is a big deal, that having a lot of time to do the kinds of touching and embracing and non intercourse-focused sexual activity may itself actually be the full deal. That that might be as important as anything else, and again, really shifting our focus to pleasure as opposed to being goal oriented, I think, is a very important part of rehab and recovery when we go through cancer treatment.

Dr. Sharon Bober 26:18
So I want to really emphasize that I am not just talking about the mechanics. There are lots of other pieces of this puzzle. I think that men and women really need to become aware of the automatic, quick thoughts that kind of jump through our heads and often influence how we feel. So, often we are not aware of those assumptions. “My partner is going to not be attracted to me anymore. Nobody would want to date somebody who has a stoma. I had an accident, and that’s gross, and nobody will want to be with me again”. All kinds of things that can happen almost so quickly that they just automatically lead us to feeling like, “No thank you. It’s not something I’m interested in”. But sometimes those automatic thoughts are not true. Sometimes, if you heard a friend or a sister share something like that, you would say, “Wait a minute, hold on, not so fast”. You’d talk back to that thought. You’d say, “Don’t be so sure about that”. We’re very good at saying that to a friend. We’re not so good about saying that to ourselves. And we really need to notice how those thoughts impact our feelings, and we really need to become much more aware without judging. We need to really become aware of the whole bunch of thoughts that might swirl through our head without assuming that they’re true. My daughter, once noticed when we were driving, and she said, “My God, mom, that bumper sticker sums up everything you ever talk about”. It basically said, “Don’t believe everything you think” and it is really true, right? We have all kinds of automatic thoughts which we assume to be true, and they’re not true. We need to really think about moving from that space of avoidance, or distraction, distracting ourselves from some of these negative thoughts to a place where we can accept the thought, notice it’s there, and move through that place. I will also say that we also, similarly, make all kinds of automatic thoughts about our partners, about relationships, about what we imagine our partner thinks we’re thinking, and lots of times those things need to get flushed out with some communication.

Dr. Sharon Bober 28:23
So I think, on that note, I really want to talk about the the idea that there has to be some relationship work that gets done. Certainly, for anyone who is partnered. We know that partners go through this as well and couples really need to be able to clarify what’s the action plan for the couple. How do we have a new chapter? How do we notice what we used to do, and recognize that maybe we need to do something different? In clinic, I spend a lot of time talking with people about this idea of initiating. For example, if you’ve gone through menopause and you’re not feeling a lot of spontaneous desire – this is actually a good example – where it used to be that desire felt more like a light switch, somebody looked at you across the room and you felt interested, and you were ready to roll. And now, it’s actually that you need to cultivate that experience. You need a lot more time to cultivate a feeling, to jump start the feeling of being in the mood. It isn’t like a light switch anymore that you might feel guilty. And time goes by, and then you feel more guilty, and then you don’t say anything to your partner. Partners don’t want to be pushy. And there’s, again, that elephant in the room. And for lots of couples, one way to get around that, for example, is just to say, “Listen, in this new chapter, we need to just have a date night each week” as opposed to waiting for someone to be in the mood, or waiting for someone to initiate and then feeling bad if you don’t, or feeling awkward if you say something. What if we just say, “Listen, we’re going to put time aside and we’re going to – with intention – the way we might plan for going to the gym or going out to dinner (or I should say we used to go out to dinner before the pandemic, but you know what I mean). We would plan for something. Why don’t we say, “As a couple, we’re going to make a point of saying, whether it’s Sunday morning, Friday night, Tuesday afternoon” – everybody’s context is different. “We’re going to put some time aside to spend a half an hour being connected without our phone or screen or TV, without being 11 o’clock at night because everyone’s tired and it’s late, but we’re going to make time on a weekly basis to just have some time to reconnect”.

Dr. Sharon Bober 30:27
And that may not be about sex, that might be about sex, that might be about something sexy. It might be about touching or kissing or holding without having a lot of pressure, but it gets us to a place where we sort of reconnect in a way that’s sensual, that’s focused on connection and sensuality without pressure. That may not be obvious if that was not part of the repertoire before, and that’s a very good example of a way to create somewhat of a new set of dynamics so that people aren’t feeling pressured in any way. So, I don’t mean to throw a laundry list out there, but the idea is that you start slow and you can take off the pressure, it really opens up a whole different level of connection. And I think that, potentially with some coaching, sometimes it’s really helpful to talk with someone to get some help for some of that stuff. Lots of couples find it helpful to have somebody do a reboot or a reset for how to get back to being in connection without feeling a lot of pressure. And I would say that, having an experience that creates a sense of novelty is also helpfu because when it is only about what you’ve lost or how it’s different, sometimes people feel disheartened. People feel down about the whole thing. On the other hand, if you can switch that up to thinking about how, as a couple, you’re creating something new together, whether that’s doing a new activity that has anything to do with sex, that could be doing something just fun, just allowing you to feel connected. It’s a really nice way to think about dating again. It’s a nice way to think about what it is when you were dating. And that means that you’re trying to be on your best behavior and woo your partner, and think about what you can do to keep your partner’s needs in mind. I think for lots of couples, it can be helpful to think about dating in this way, even if you’ve been married for a long time.

Dr. Sharon Bober 32:33
I really just want to emphasize the fact, and I think you’ve heard me say this now more than once. You know, lots of different aspects to sexuality and sexual health, but everyone deserves to get the support that you need. So thinking about how your treatment may have had an impact on sexual health or sexual function is not good enough. You need to identify the resources that you need. That might mean figuring out who you speak to, and how you start the topic of conversation, because we know, if you wait for your team or your providers, it is likely that they might not bring this up. And I would just want to encourage women to not be afraid to seek help. In my experience, in the years that I’ve been doing this work, it is stunning how many more resources we have now than we had even 10 or 15 years ago. There are a number of resources now online, as much as in person. In terms of actual programs, there are lots of resources, both specific to colorectal cancer, and in general, to cancer. And I think that it’s really incumbent on all of us to access those resources. So, I think again, stepping back and recognizing that this is about quality of life, it is really. This is a quote that I’ve used for many years, because I love this quote, “It’s a waste to be alive but not to live fully”. I think that’s really true. And I think that my goal is to make sexual health a part of cancer care the way that we have lots of other kinds of things that we think about. So whether that’s bone health, whether that’s heart health, whether that’s any other part of health and well being, sexuality should be a part of that. You shouldn’t be shy to ask for help if you need it and to seek out the resources that are available. So thank you for having me today Manju. It was really a pleasure to be here and to to speak with all of you, and I hope to be a resource, if I can in the future. Thank you.

Manju George 34:28
Thank you Dr. Bober, that was excellent. So I’ll just see if Julie and Marion have any questions, and then I’ll start with a few questions.

Julie Clauer 34:37
Mine might be pretty specific, but I’m looking for a new gynecologist, and my previous gynecologist couldn’t talk about these things, so that’s one of the reasons why I’m moving on.

Dr. Sharon Bober 34:50
Amazing, right? The gynecologists don’t talk about sexuality, but it is true.

Julie Clauer 34:54
So my question is, what kinds of things would you ask to find the right person before you meet with them, and if there’s any sub specialties or anything that I should be looking for?

Dr. Sharon Bober 35:08
Well, I would say that although it’s it’s not 100% tracking, I think that if you find a gynecologist who is also certified as a menopause specialist, that may be a good hint that they have some training and how to talk about these issues. Again, it doesn’t mean that you’re a sex therapist if you’re a menopause specialist, but many folks who get that certification do certainly have at least base experience, foundational experience around dealing with some of these issues. You can get on the national association at NAMS, the North American Menopause Society, They have a listing of NAMS certified menopause specialists, so that might be one place to start in terms of finding a gynecologist who is at least comfortable or knowledgeable of some of these issues. Certainly, you could reach out to any sexual health program, if there is one at a cancer center in your city, to find out if there are gynecologists that either collaborate or coordinate with that program. There certainly are gynecologists around the country who have a growing specialization in this. So I think that is something you can also look towards. But I think the NAMS menopause certification is a good place to start.

Julie Clauer 36:27
That’s great suggestions. Thank you.

Dr. Sharon Bober 36:29
Sure.

Manju George 36:32
You covered a wide variety of things about what to be physically, what one needs to be aware of, and then all the mental health parts. So one thing that we see in our groups is, with young women, or sometimes it’s older women too, but once they have been diagnosed, their partner of 15 years decides that he’s done, he’s moving on. We see that a lot, and then that’s somebody who’s dealing with cancer, just to know that somebody who they thought were with them their entire life is suddenly gone. So, I’m wondering whether you have any – it’s such a bad place to be, but if you’re in that situation, what are some of the things that you can do so that you’re not down in the pits.

Dr. Sharon Bober 37:19
Well, I would just say, for anybody who’s been with someone for 15 years and they leave because you have cancer, you’re going to be down in the pits, right? That’s a pretty crappy thing. And for me to say you don’t have to feel bad about that, is insane. That’s a horrible place to be but I think the key is recognizing that even though that has happened to you, it does not mean that all partners, all potential partners, would be the type of person to do that. I think partly what you’re getting at is, how does one recover a sense of hope or belief that, one, you could ever have a partner again, who’s a good person, and two, who would be the kind of person that wouldn’t leave when the going gets tough, right? And what I can say is that we know that not everybody can handle tough stuff like that, and sometimes it is a really crappy way to find that out that when you go through a cancer diagnosis, that’s when you find out, and you dig down that the person you’re with is not able to handle that because it’s way too scary or way too overwhelming. And it’s important to recognize that that does not define all men or all women. That there are other people out there who don’t leave, who are willing to stick with it and stick with you and find a way to move forward. So, I think the key here is that you need to talk to lots of other people. You need to hear from other people that not everybody does that. You need to grieve that loss because that’s an enormous sense of grief and loss, and to pretend that it’s fine when it’s not fine isn’t going to work anyway. But you also have to know that there will be somebody else. There will be someone else who’s going to love you and who’s going to stay with you. But the fact is, that’s a horrible thing to happen and we’ve all met people who have had to deal with that. So I think the paradox here is recognizing that it is a terrible grief that you have to acknowledge, and that not everybody does that, and I think really what it comes down to in the end, is recognizing that it’s not about you. It is not about anything you did, but that really says more about the person who can’t handle it. And it may well be that they are panicked and overwhelmed. And I’m not trying to say something to make them seem sympathetic, because when that happens, that’s terrible. But the fact is, it is more about the person that leaves than about the person that’s being left. So I think that that’s sort of all I can offer in a two second response, but knowing that that does not define all partners or all people, is really important to recognize that.

Manju George 40:15
Thank you very much. So in that situation, you said something that was very interesting in the beginning. When you’re surviving cancer, or when you’re going through cancer and your tumors are shrinking, then people think that they have to be just grateful that they’re living, and everything else is secondary, right? So in such a situation, how do they look at recovery? How do they get out of where they are, do they start with a counselor? How do they get to that mental space where they can move forward? It’s a difficult question to ask, but if you have some bullet points?

Dr. Sharon Bober 40:54
Well, I mean, I think the point that you’re getting at is that people have to identify where they’re stuck in order to figure out how to get help. So, I would imagine that lots of the the groups that you’re involved with, are are both helpful from an educational, informational point of view, but they’re also therapeutic, right? They allow people to hear from other points of view, and to hear from other people that life may look different in a different chapter, that there are different possibilities, that there are different ways to look at the same problem. And I think the point you’re making is that, at least, that I’m hearing, is that you have to sometimes figure out where you’re stuck, and then from there, figure out, well, who would be the kind of person to help me get unstuck? Sometimes we aren’t even aware of how we’re stuck. So, I am the first person to say that you don’t need to see a sex therapist or a psychologist for every sexual problem. Sometimes it’s really helpful, I think, – I know, I do that work, but I don’t think that’s the only way to go. I think that the key is that for some people, for example, doing some reading about dilators is good enough, and they get all the help that they need and it works. Somebody else actually says, “Wait a minute, I don’t feel comfortable, this isn’t working. I end up getting a lot more help going to a pelvic floor physical therapist”. It’s the same idea that it’s not one stop shopping, not everybody needs the same kind of intervention. But what’s key is to figure out for yourself, for my own sense of self, what is it that I need? Where is it that I’m stuck? What are the things that I am moving forward with, and what are the things that I’m feeling like there’s a barrier there. And I think I would work backwards right from identifying where the stuckness is, to then figuring out what are the kinds of resources that I need.

Manju George 42:44
Thank you very much for that. Thank you so much. So then some of the other things that we hear about is about young people in their 20s or 30s, who are not in a stable relationship, and what happens to them? I think you covered some of it about body image and how you have to grieve what you’ve lost and be more accepting of where you are now. Could you please elaborate a little bit because here, in our groups, it’s a diverse membership. We have older, younger and their problems are all different. And you hear somebody saying, “Hey, this happened”. And the other person is like, “Oh, you’re talking about that. Look at me. What do I do now? I’m 20, and this is what life is.”

Dr. Sharon Bober 43:29
Sure, well one thing I will say, and I think it’s the case whether you’re married or whether you’re single, I don’t think people are defined by any one body part or body alteration, and that’s also the case when it comes to dating. I am the first person, I mean, I do these really fun dating workshops at Dana Farber. I’m the first person to acknowledge that obviously, it may well be that you have to take it a little more slowly, and you’re not going to have an anonymous hook up with somebody if you’re not comfortable with an ostomy. I get that. But at the same time, the idea that no one would ever want to date me because I have an ostomy, is totally not true, right? The fact that you know the pictures of bodies that we see on TV and movies, the perfect bodies, again, part of that’s hard for everyone, right? Because it’s an ideal, it’s an image, it’s a fantasy that springs from the mind of an 18 year old boy. That is supposed to be, how you’re supposed to look, whether you have an ostomy or not, whether you are a woman at the age of 25 or 75 it’s crazy, right? No bodies look like that. But the fact is, so we sort of have all this cultural baggage in terms of how it’s supposed to be and how it’s supposed to work, and how we’re supposed to look. But the reality is that if you are with the kind of person who sees you as a whole person, I truly believe to be true, and know it to be true, that whether you have an ostomy or not is not going to define whether you can have a new or possibly positive relationship. I think the key is that if you are dating and you share with somebody a little bit, and this is always how it’s my perspective, you don’t have to, I mean, some people sit down on a first date and tell their whole story, and that’s fine, but lots of people aren’t sure how you disclose when you start. My invitation to people is to say, “Listen”, you can say, “Well, listen, actually, last year really was a hard year. I went through a cancer diagnosis, and I had a tough treatment, full stop. – Just full stop, and see what you get back from the other person. If the other person leans in and says, “Oh my gosh, that’s terrible, tell me more about it”. Versus looking like a deer in the headlights and they’re looking for the nearest exit, that’s just saved you a lot of heartache. Because if it’s the latter or the second case, you could be done. Because this isn’t going to be the kind of person you want to date, right? So, I think it’s helpful to recognize that, yes, I understand it’s challenging to date whenever anything is not what you might, quote, expect from typical dating. But on the other hand, if you are being genuine and you are putting a little bit out there, and the other person really seems to want to know more and see you as a whole person that’s going to be very different than somebody who seems freaked out anduncomfortable and doesn’t want to know more, right? I always feel like that’s just a test balloon that’s just going to save you a lot of trouble because you’re good to go, “I got a phone call, see ya”. So I would say that really recognizing that there are really good people out there, men and women and everybody in between, who see each other as whole people, and who are not focused on any one body change or alteration as defining of who you are. And I think recognizing that you might have to again, meet a few different people, but that’s the case all the time, right? And so I think if we can get outside of the cultural crap, the cultural baggage around how things are supposed to go, and recognizing that real life is complicated and messy in lots of ways, it frees us to realize that there’s a lot of possibility.

Manju George 47:05
Thank you for that. So my next question is about people who are done with treatments. They say that, while you’re getting through treatment, you have goals, your whole life is focused on getting to some end point, and then you’re there. And then we have in our group, for example, we have people who don’t know, are not very sure about their career. What seemed very fulfilling isn’t fulfilling anymore. They are questioning their relationships. They’re questioning everything they are at that point in their life, and they seem really stuck. So this is not a sexual health question, but it’s more a mental health question. So I was wondering if you have any pointers?

Dr. Sharon Bober 47:45
Yeah. I think that’s actually where I think some individual psychotherapy can be helpful. Quite honestly, I don’t think people need to do long term psychoanalysis, but I think that’s why finding a clinician and now again, with the beginning of this pandemic the good newsabout telemedicine is that, you can reach people great distances. You don’t have to go to somebody’s office anymore. There are a lot of mental health providers, social workers, psychologists, that have really good training in working with people after cancer. There is clearly a sub specialty in this, and I think that this is where it can be very, very helpful to have, whether it’s three sessions or five sessions or eight sessions. It doesn’t have to be a longtime ongoing treatment, but to really help you crystallize and clarify: What are the next steps? How did this life-changing experience have an impact on what it is that you’re doing or going to do? How you want to look at that and maybe make changes in your life, or maybe not make changes in your life? I think again, it doesn’t have to be there’s only one way to have insight, but I don’t think people have to feel that they have to do it all on their own. Being able to get the right kind of support, and in this case, maybe doing a little piece of counseling, I think, can be incredibly powerful.

Manju George 49:12
Thank you so much. Julie, do you have any more questions? Marion?

Julie Clauer 49:15
I don’t think so. This was super helpful. I can’t wait to share it in the Tough Chicks Club.

Dr. Sharon Bober 49:23
Well, I appreciate being with all of you today, and I appreciate the opportunity to meet Tough Chicks through you, and to know that, I just want to say again, I think that I’m actually not saying again, but, say for the first time I think although there’s more interest around this topic around colorectal cancer, it doesn’t nearly get the attention that it deserves. I think people often think about GYN cancer, and certainly breast cancer, because it’s such an obvious alteration, if you havebreast tissue or breast removed. But it doesn’t mean that it’s any less relevant. We know that it’s just as relevant, if not more so for so many of our patients who go through this. So, absolutely, don’t be biased to wait and seek out resources.

Manju George 50:07
Yeah, I have a question for you. So I think that, in your practice too, we have this invisible effect on colorectal cancer patients. They don’t have an ostomy, but they have what is known as LARS, which is not something you can see. And, how do you tell somebody that you meet that you might have to get up in the middle of the meeting and go to the bathroom and you might not come out in the next three hours, right? Those kinds of things. So, there isn’t so much awareness, even among surgeons, when you want to tell them, “Hey, I heard in this group about LARS”, and they’re like, “Oh, your chance of getting it is very low”. And the person is like, “I’m, like, two years out of surgery and I’m still in the bathroom for this long”.

Dr. Sharon Bober 50:49
Yeah. And that’s a real that’s a huge challenge, right? And we, everyone has to deal with that. It feels very embarrassing 100% and that’s the kind of thing that I would say that may not be something that you talk about the first minute on a first date, right, but that it doesn’t define you. It isn’t all of you. And in the same way that people make decisions to be with all kinds of partners based on who they are as a whole person, that is just part of the conversation that you share over time. And I totally agree that it’s all because something might not be easy to talk about, does not mean that it can’t be talked about, right? Does not mean that there isn’t a way to talk about it. But I totally get that. And I also think sometimes these sort of side effects are downplayed by physicians on the front end because nobody wants to talk about it, right? But it doesn’t mean that they’re not real, and it doesn’t mean that they don’t have an impact on relationships. It’s just something that we have to take on and acknowledge. It’s just part of the part of the price that we pay to go through treatment.

Dr. Manju George 51:53
So this is my last question. So I was talking to my gynecologist, and she suggested an app, which is known as “Rosy”, and I was wondering if you’ve heard of it?

Dr. Sharon Bober 52:02
Yeah, yeah. It’s fine, in the last few years there’s just been this huge explosion of femtech and sextech and putting things on app and, I think it’s cool. I mean, I’m old, so I don’t do a lot of that myself, but I would say that there are a lot. It’s just, I would put that in the same category as lots of resources that are available to women right now. I think that the main thing I want to say, is that sometimes these resources are useful. Sometimes it doesn’t feel like it’s tailored for you, right? Sometimes it’s helpful to get a little bit more individual consultation or counseling, because something that seems kind of basic for everybody needs to get figured out for oneself, right? It has to be in a more tailored sort of way. So I would say that something like Rosy is a good example of an app that it looks good, it has lots of good information about sexuality and at the same time, don’t be shy if you feel like you need to get some coaching or counseling at a more tailored sort of way to make something more individualized for one’s experience.

Manju George 53:17
Thank you so much. So I was wondering that those people who are uncomfortable bringing up those subjects, if, for example, as a group, we could introduce people to these apps and say, “Start here”, and then they they watch or see something, and then we can suggest to them from this, the next step is going to counseling or meeting somebody so people don’t even want to —

Dr. Sharon Bober 53:38
–Sure, even the stuff that you can look at online or the apps. It’s really just also a way for women to get clear on what the issues are so then you have a way to talk about that with your doctor, right? Or you have a way to talk about that with your partner. I’m all for it. I certainly think that, like I said, there’s really been an explosion of interest in what’s called, mobile health, or electronic health, and that’s also now with sexual health. Moving in that direction and, and I would just say, getting access to the resources is great because it allows you to know how to start the conversation. So, it’s funny, like with something like Rosy, it’s great because, we talk about when physicians say that they don’t start the conversation because they don’t have resources. When the gynecologists say, get that app, it’s easier for the gynecologist, right? So it kind of works for everybody.

Manju George 54:30
Okay, thank you so much. This has been great, and I’m sure that once we post the video, usually we start getting comments, so I’ll email you some, depending on how they come.

Dr. Sharon Bober 54:39
Sounds great. Nice to see everybody. Pleasure to be here with you. Yeah, take care. Bye, bye.