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Sexual health and colorectal cancer: Dr. Agrawal February 2024

Doc Talks

In this DocTalk, Dr. Laila Agrawal discusses sexual health and colorectal cancer with COLONTOWN’s Julie Clauer. Recorded in February, 2024.

Julie Clauer 0:00 
Hi, everybody, it’s Julie Clauer. I’m going to be hosting this on behalf of Manju today. But just would like to give a couple minutes before we start. So thank you all for joining. And thank you for joining with your mute on. As I think everyone on has been on one of our DocTalks before, but we will answer questions, but please enter questions into the chat as we go. And at the end, I’ll moderate the questions. So feel free to put everything in there you have. So, okay, why don’t we get excited to get started. So, this is Julie Clauer. I’m the educational lead for Paltown and I’m very excited to introduce Dr. Agrawal from Norton Cancer Institute. I’ll have her introduce herself a little bit more. But she’s here to talk about colorectal cancer and sexual health and I had the privilege of being in the audience at the ASCO GI when she spoke on this topic on a panel with our own Manju George and it was really, really, really helpful. So I’m very happy that she’s here to discuss this topic with us further. So with that, I’ll turn it over, you can introduce yourself.

Dr. Agrawal 1:20 
All right, thank you so much, Julie. So I’m Dr. Laila Agrawal. I’m a medical oncologist. I actually specialize in the treatment of breast cancer. But I also have developed a sexual health program focused on women with a cancer diagnosis, dealing with sexual health concerns that can arise after diagnosis and treatment. And I also address care for pre-vivors. So for individuals who may have a genetic mutation that predisposes to cancer risk, and go through treatments with resulting sexual health change. So this presentation is mainly focused on issues related to women’s sexual health needs, or vaginal, vulvar and pelvic issues here.

Dr. Agrawal  2:09 
So I’ll kind of jump in. Here are my disclosures. So first of all, you know, let’s kind of open up this conversation and talk about sex. So this is a topic that can be really difficult to talk about, even among friends, even with somebody’s own partner, and especially in a medical setting where this has not been discussed before. But it’s important for me to start this talk by saying that sexual health is important. It is recognized as being fundamental to the overall health and well being not only of individuals, but also couples, families. And this is relevant and important, you know, obviously, not only during reproductive years, but also throughout an individual’s lifespan. So, you know, I think the reason I start off with this slide is to just state that this is important, and this is a medical issue. And it’s one that very commonly can be disrupted and disturbed after a cancer diagnosis and treatment.

Dr. Agrawal 3:11 
So long-term sexual health concerns can affect 50% of patients with breast cancer, gynecological cancers that affect pelvic organs, 65% to 90% and among patients with colorectal cancer, female patients with colorectal cancer, long-term sexual health concerns can affect up to 60% of individuals. So this is very, very prevalent, that these issues arise and that they persist without treatment. And one in particular that I highlight is, you know, pain, so pain with sex. We see that some studies have said 45% of patients with breast cancer, and in patients who have rectal cancer, female patients with rectal cancer, it’s even higher than that, 55%. So, you know, these symptoms like pain and others are prevalent. They are common, and, you know, we really need to be able to talk about it, address it, figure out what’s going on and what can be done to assist.

Dr. Agrawal 4:10 
So, clearly, when people go through cancer treatments, the treatments may include surgery, chemotherapy, radiation focused at different parts of the body and sometimes targeted therapies or other cancer therapies. And each one of these has its own particular way that it may impact sexuality and sexual function.

Dr. Agrawal  4:10 
So when I’m seeing patients in my sexual health clinic, the way that I talk about sexuality and sexual health is through what we call a biopsychosocial model. And that basically means that there are biological factors which are physical or hormonal factors, psychological factors that are the mental and emotional parts of this, and then social interpersonal factors that has to do with relationship with someone’s partner, but also sort of societal norms or views or standards. And so all of these different factors, they come together to make up the way that a person experiences their sexuality. And when there’s a cancer diagnosis and treatment, all of these different domains can be impacted in different ways. So we sort of tried to break it down with what’s happening in these different domains and see what is available and what can be done to address these issues.

Dr. Agrawal  5:37 
So there’s many different biological or physical factors that can occur. So I’ve just highlighted a few. So one is going to be things that fall under the genitourinary syndrome of menopause, so that includes vaginal dryness, decreased lubrication, vulvar dryness or irritation. It can also encompass something called vaginal stenosis, which is actually narrowing, loss of elasticity or even shortening of the vagina that can happen after radiation or surgery, pain with vaginal penetration, pain with sex, and then going through chemo or other surgeries. There can be weight changes, fatigue. For example, a premenopausal person has loss of ovarian function either through radiation to the pelvic areas, which impacts the ovaries or through surgery, they may experience menopausal symptoms. And then if somebody has an ostomy, that is a major change, as well as other bowel changes that can happen that can affect sexuality, sexual function.

Dr. Agrawal  6:48 
In the psychological domain, you know, many different things can happen after a cancer diagnosis and going through treatment, including mental health changes like depression, anxiety, there can be fear of cancer recurrence, changes in body image, sleep changes, motivation changes, and then the domain that’s called sexual response that includes libido or desire, arousal and orgasm. And that sort of, you know, spans all of those domains, its physical, psychological, and interpersonal.

Dr. Agrawal  7:25 
And then social factors, you know, really when one person in a partnership experiences cancer and treatment, it obviously can put a huge strain on, you know, the unit in terms of communication. Also the partner may be going through their own coping with the diagnosis or their own mental health or physical health challenges. Other social factors include someone trying to date after a cancer diagnosis and how do you approach that? The pressures of work and family and cancer treatment and appointments and all that. And then, beyond the physical presence of the ostomy, how does that impact somebody in how they choose to go about in their social relationships. And then in terms of a partnership, mismatched libido is an issue that affects many, many couples outside of a cancer diagnosis, and this can be exacerbated or that gap can be widened after going through a cancer treatment.

Dr. Agrawal 8:30 
So I’m going to highlight a few sexual health concerns that we’ll go into in more detail and then I’ll mention a few others as well. So vaginal dryness, really now we consider this as the genitourinary syndrome of menopause, pain with sex, and low libido. So, to start off with talking about the genitourinary syndrome of menopause, one of the symptoms is vaginal vulvar dryness, that can also feel like irritation, burning, feeling like you have to urinate but you don’t really or having a feeling of a UTI that’s negative for bacteria.

Dr. Agrawal 9:07 
So one of the simple treatment options for the symptom of vaginal dryness is to use nonhormonal methods like moisturizers and lubricants. So a moisturizer is a product that is used on a regular basis with the goal of improving the health of the vulvar and vaginal tissue. So this is not only to be used with intercourse, that’s more of a lubricant. Moisturizers should be used at least three to five times per week, regardless of sexual activity. And the reason is because it’s for the health of the tissue. Many of the products on the market now, or some of them, have an added component called hyaluronic acid and this brings in extra moisture. So a nonhormonal vaginal vulvar moisturizer with hyaluronic acid used three to five times a week can help with that symptom of dryness. The other product is called a lubricant. So a lubricant has a different purpose, it’s trying to reduce friction, that causes discomfort. So, although some products are combined lubricant and moisturizer, there are also others that are separate. So a lubricant is intended to be used prior to sexual activity with the goal of reducing friction and increasing comfort.

Dr. Agrawal  10:28 
So when it comes to vaginal moisturizers, there’s really a range of different things that can be used. Of course, I would always say to talk to your health care team before using any of these products to make sure that it’s appropriate and that the timing is appropriate for everybody’s individual case. So there are natural oil moisturizers such as coconut oil, Vitamin E oil, or olive oil, those can be used. And then there’s commercial products that can be purchased without a prescription, either at the drugstore or online. So some of these vaginal moisturizers include Luvena or Replens. And then now I find myself more often just jumping straight to recommending the hyaluronic acid moisturizers because those do have extra moisturizing capability. So some of the brands that I recommend are listed down here. And the moisturizers they come in different formulations. So some of them might be a gel or a cream and others come in the form of a suppository with a solid oil base that’s inserted in the vagina, and then it melts with body temperature. So some people, you know, have different preferences, applying with the fingers, applying with an applicator or having a suppository.

Dr. Agrawal  11:46 
When it comes to lubricants, it’s really important to select a good product because many, many, I would say the vast majority of products that are on the market, are not going to be appropriately balanced for the pH of the vagina and the osmolality of the vagina. So what that means is, it can increase burning or increase discomfort and pain if it’s not the right product. So one category is called a water based lubricant and this is a good place to start. They tend to be less slippery, less messy, they don’t stain. But the ingredient list as well as, as I mentioned, the pH and osmolality need to be checked. So it’s important to try to avoid things that could be irritants to that tissue like parabens, any chemicals that are added for the purpose of warming, tingling, flavor, things like that. So the Good Clean Love, the brand I had on the other page, that has some cleaner type products that don’t have a lot of these additives to them. The other type of lubricant is called a silicone-based lubricant and this is actually probably a better lubricant. Because it is more slippery and it is longer lasting. However, it may stain just based on how it is. And it’s advised not to use it with a silicone-coated toy or a dilator. They just say not to mix those. So those are the nonhormonal options. But for this symptom of vulvar and vaginal dryness, the most effective treatment for that is going to be a topical vaginal hormone.

Dr. Agrawal 13:30 
And so there’s a range of different low-dose hormonal products that are prescription. So some of them come in the form of creams and actually Vagifems is a tablet, it shouldn’t be on that cream list. But for example, Estrace or Premarin cream, and then there’s some that are inserted, so some may be an insert in the form of a tablet. The issue with that is the tablet may not dissolve and may not deliver all of that dose every time. The second one on the list here IMVEXXY, this is an ultra-low dose vaginal estrogen product that isn’t a suppository, so it’s a solid oil-based suppository that again melts with body temperature. And then another one, all of those use estradiol as the estrogen or estradiol as the component and then another brand uses a different hormone called DHEA or Prasterone which also helps with genitourinary syndrome of menopause. And then there’s another formulation that comes in a ring form that can be inserted into the vagina and left in for a while rather than having like multiple times a week used. So vaginal hormones are really the best treatment option for dryness, irritation, vaginal concerns there. So if anybody has concern that this could be a helpful treatment for them to reach out to their doctors, their oncologist or gynecologist to discuss this.

Dr. Agrawal  15:05 
So the next, the next topic I’m going to address is pain. So it is common, as I mentioned at the beginning, for women with a diagnosis of colorectal cancer to experience pain with penetrative vaginal intercourse after going through their cancer treatment. And there are several different causes for this. One of them is the decreased lubrication and the dryness that can occur as a result of loss of hormones from radiation or surgery, or effects of radiation on the tissue directly. So one of the things that can happen is called vaginal stenosis. And that is actually narrowing loss of stretchiness, or elasticity or even shortening of the vagina. One of the causes of this is radiation, also surgery, also hormonal changes can lead to this. So one of the treatment options is something called a vaginal dilator. Let me just see if I have a, okay, and so I have some examples here of vaginal dilators which I’m going to kind of show up. And so these are cylindrical devices that come in different calibers and different lengths. So this particular one is a soft and flexible device that’s coated in silicone. And there’s other types that are out there that might have more of a hard plastic form. And so these are intended to be used, to be gently inserted into the vagina, in a comfortable, relaxed position. A pelvic floor physical therapist can help instruct on the use of this, as can people’s oncology teams potentially. It is meant to be coated with a lubricant to reduce friction and then inserted just to the level of comfort into the vagina. And then, after that, the individual kind of works on breathing and visualizing like relaxing or opening up the pelvic floor muscles. And it’s not intended to be painful or uncomfortable, only to the use of where it feels comfortable. And then over time, the size of the dilator can increase until you know the desired goals. So these are different sizes that come in a kit or a set together. So there’s different ways to do that. Another really good treatment is called pelvic floor physical therapy. And this is a really important treatment for both men and women who go through a colorectal cancer diagnosis and are having symptoms, not only pain with intercourse, but maybe having bowel or bladder concerns. And this can treat many different symptoms, including pain with penetration. So sometimes that pain is not due to dryness, and it’s not due to the elasticity of the tissue, it may actually be due to the function of the pelvic floor muscles. So the pelvic floor muscles that kind of work together to support the pelvic organs and when they undergo stressors, many, many different causes can exacerbate pelvic floor dysfunction, including surgery, radiation, and others, those muscles can either become a little weak, where there might be concern about prolapse, but what I see more commonly in my patients who are experiencing pain with intercourse, those muscles might be too tight or too or hyperactive. And so working with a pelvic floor physical therapist can help to learn how to work on those muscles. And that can actually improve the symptoms of pain with penetration. There’s a particular form of pain with penetration where individuals describe that the pain does not seem to be from dryness, does not seem to be from decreased lubrication, but is right at the opening of the vagina, so the entry point, and that the pain is localized right there. And there was actually a study, a clinical study, that looked at people who reported this symptom and applied topical lidocaine to that opening of the vagina, which is called the vestibule, and then wiped it off after about just a couple minutes and found that that reduced that symptom of pain at the initial point of penetration. So this is a different thing than dryness, decreased lubrication, or even pelvic floor dysfunction, but in some situations, when that is the symptom that people are having the topical lidocaine just on for a short period of time and then wiped off can help with that symptom.

Dr. Agrawal 20:06 
The next topic I’m going to talk about is libido or desire. And so this is something that is a really common and often a distressing concern after going through cancer treatment. For other people, they may experience a decrease in libido, and it is not of concern to them. And then it’s not obviously a problem in that case. But this discussion is for somebody who might feel a change in their libido that is distressing to them and wants to know, what can be done to change that. So the first thing I start talking about is, you know, what is sexual response? And what is the current theory about that, because I think that in, I guess, in our cultural, you know, understanding of sexual response, incorrectly, there’s a very linear model where someone just boom gets, you know, desire, and then they get aroused, and then they have sex and have an orgasm. And that’s, that’s the end of it. But that’s not really the way that most people experience sexual response. And so this model here was, is sort of a working model of female sexual response in the form of a cycle where the the woman’s sexual response can be activated from sort of a neutral state to like an activated state by multiple different factors. One of those factors is spontaneous sex drive. But it’s not the only one. And this can still work perfectly well, even if the spontaneous sex drive is low. So the idea is that there are multiple factors that can stimulate that. So some of those might be symptoms like arousal. So whether its use of fantasy, or seeking an emotional connection, or a physical arousal, or like the desire for closeness, any of these factors can lead to arousal or interest. And then the important part here is that sexual arousal can actually come first, and then the desire can come next. And then all of that progresses to what they call satisfaction. And that doesn’t imply necessarily sex and having an orgasm, although that may be part of it, but some form of physical and emotional satisfaction that can also lead to intimacy. And then that, again, is another stimulus for seeking out sexual activity or experiencing sexual arousal. So the reason I talk about this cycle, which is like a theoretical model, is because a lot of the patients that I talk to, they feel like when the spontaneous sex drive goes down, that there’s really no other tools in the toolbox, how to bring back libido or how to really have that sexual connection that they desire with their partners.

Dr. Agrawal 23:07 
And so here, are just some basic, simple ways that one can work to increase libido with a partnership. So one is to work on expressing what’s called everyday expressions of affection. So just that’s the hand holding or the, you know, attention that you’re giving your partner, fostering emotional connection, being able to have time together to connect with one another as much as possible without distractions, maybe planning or setting this time aside. Individuals can find ways that they’re able to increase arousal, whether it’s with reading certain, you know, literature or self touch, or using vibrators. Exercise is a proven way to increase arousal and desire. And then, when talking about sexual response, there’s there’s been a really big focus in the past several years on the concept of mindfulness, which is essentially learning how, not specifically for a sexual situation, but in general to just learn to focus on the moment. Be present, focus on the breath, focus on what’s happening at this current time. So one of the big detractors from enjoyment, pleasure and satisfaction in sex is distraction. So practicing mindfulness can also be used in terms of increasing pleasure and satisfaction during sex. And then a helpful tool for somebody whose goal is to increase sexual activity or sexual connection with their partner is to schedule time for intimacy. So, you know, pick several days or a week ahead of time, a time when both partners are going to be available, have privacy, a time when the fatigue may not be at the highest level, and then look forward to it, plan ahead for it, you know, so that can really help with increasing the arousal and then subsequently the desire kicking in. Other things that are really important are to review the medication list because so many medications can have negative impact on libido and these include commonly prescribed medications such as, you know, antidepressants, antianxiety medications, pain medications, you know, neuropathy, medications, all of these other ones. So if low libido is a concern, it’s a good idea to discuss with the medical team, which of these medicines might be negatively impacting libido? Are there alternatives? Are these the best ones for what’s going on with me right now? Another really excellent and really the foundational way to work on this is through counseling, psychosocial counseling, either with a general mental health professional or with somebody called a sex therapist. So a sex therapist is a mental health professional that does, talk therapy, often using cognitive behavioral techniques and others, but they are specially trained in issues related to sexuality, either with an individual or as a couple. And some of the techniques that might be employed include one called the sensate focus, which is a way of sort of reconnecting the mind-body-partner connection in terms of physical arousal and pleasure. And so this technique has been around and has been shown to be effective in many situations over the years. So a sex therapist can be found on the website that provides a certification, which is called AASECT. So under that website, you can search for a provider in your area by zip code or by state to locate somebody with those credentials.

Dr. Agrawal  24:48 
So above and beyond that, there’s actually two medications that are currently FDA approved for the treatment of low libido for women, but they are specifically approved for this situation of a premenopausal woman who has a condition called hypoactive sexual desire disorder, which specifically says that the low libido is not caused by a medical condition or a medication and so after cancer treatment, certainly the impact of the treatment might be a contributing factor on libido. However, these medicines are out there. The Flibanserin is a daily oral medication. It has side effects of sedation or low blood pressure and should not be combined with alcohol. Bremelanotide is an injection given as needed. So prior to desired sexual activity, a person can inject themselves with this medication. It may cause nausea that usually can be counteracted with antinausea medicines. So these are options that are not really approved in the setting of low libido after cancer diagnosis, but could be discussed with medical teams.

Dr. Agrawal  28:16 
So another important issue when it comes to sexuality is body image. So body image is not the way somebody looks. It is the way that a person perceives their body, the thoughts that they have about their body, and the behaviors that they practice because of those perceptions and thoughts. And then the emotions that an individual feel related to to their body. And so it’s very common that after a cancer diagnosis and treatment, there are many changes that a person’s body goes through, could be hair loss or weight changes, or bowel changes, or ostomy, or a number of different things. And so, it’s important to understand that body image, even without someone’s body changing the way it looks, the way that an individual feels about their body can change and can improve. And so there’s ways to do that that can be done with either kind of simple thought patterns and exercises that someone can do on their own or probably more helpful would be counseling or even cognitive behavioral therapy. So what I would stress when it comes to body image is to know that it is not vanity, it has nothing to do with vanity, it is important and if it is distressing, then it is something that can and should be discussed with a mental health professional.

Dr. Agrawal 29:52 
Relationships are also an area that can really be impacted. So sometimes when someone is going through a cancer treatment, the roles between an intimate partnership may shift where one person is taking on the caretaker/caregiver role. And sometimes it’s hard to continue to maintain that connection of intimacy. Or if the treatment is of limited time period, after it’s over, the treatment period is over, sometimes it’s hard to work the way back to an intimate partnership too. So communication is always difficult, there’s always potential for miscommunication, and then putting all the strain of diagnosis and treatment and appointments and finances and work and family and all of those things on top of it, sometimes can strain communication. And then the partner, of course, is experiencing their own mental, emotional and physical health challenges as well. So ways to address these would be just to start off with to try to focus on communication, to try to open up the conversation talking about sex, not at the time when you’re trying to have sex or someone’s trying to have sex. So to talk about this sort of more in a neutral setting can be helpful. Bringing in a professional, like a counselor, a couple’s counselor, or a sex therapist can be extremely helpful as well.

Dr. Agrawal 31:24 
So from here, I will sort of lead into a summary. So this is just putting together many things that I’ve talked about and others. So, first of all, vaginal moisturizers manage vulvovaginal dryness, they can be used three to five times per week, some of the brand names are listed and adding hyaluronic acid can be really helpful too. The second one is vaginal lubricants. Those have a different purpose to reduce discomfort with sexual activity or genital touch, or use of a dilator if that’s being used. There’s water-based options that need to be really carefully assessed for pH,  osmolality and what components are added to it. And then the silicone-based ones may be more slippery and longer lasting. Vaginal hormones are an important treatment for the genitourinary syndrome of menopause, vaginal, vulvar dryness, irritation, urinary concerns, also the elasticity of the vagina and others. So we talked about different types of vaginal hormones. And then if incontinence is an issue, then many may be utilizing pads or panty liners. Those are designed to wick moisture away from the tissue. But the consequence of it is it can be very drying to the vulvar tissue also. So skin protectants can be utilized, such as Aquaphor, Desitin and there’s many, many others, to sort of protect the tissue from irritation and further drying. And then the pelvic floor exercises help not only with, for example, pain with intercourse, but also sometimes can help with other pelvic issues such as incontinence. And that is something that a medical team member would put a referral into a pelvic floor physical therapist. And then vaginal dilators are a tool that can be used to help maintain vaginal elasticity and reduce the chance of developing vaginal stenosis, which is something that can happen after pelvic radiation, for example, for rectal or anal cancer or others, and can help with pain as well. I don’t think I talked about this, but for individuals who are getting pelvic radiation, vaginal dilators can be recommended by many as a way to actually reduce the chance of developing that symptom of vaginal stenosis in the first place. So working with the healthcare team, finding out would dilators be helpful? If so, when can they be started during radiation, usually after radiation, but some say to do it during radiation. Can a pelvic floor physical therapist help with that as well?

Dr. Agrawal 34:18 
And then referrals. So there are many, you know, sexual health sexuality as a biopsychosocial phenomenon. So, there’s many different specialists that could be helpful in terms of what an individual may need. So if there’s concerns related to mental or emotional factors like the sexual response, which is libido, arousal, orgasm, body image concerns, social concerns, mental health concerns, or interpersonal relationship concerns, working with a psychosocial counselor or a sex therapist can be helpful and again, that’s a referral that a medical team member can place or oftentimes that care can be sought out on the patient’s part. For pelvic floor dysfunction, working with a pelvic floor physical therapist. Sometimes if there’s symptoms related to vaginal narrowing or difficulty even working with the dilators, then a referral to a specialized gynecologist or a urogynecologist or sometimes at our center, sometimes we refer to a GYN oncologist for some of these concerns. And they’re able to evaluate the vulva, the vagina, see if there’s any other issues beyond what I discussed that might be at play. And then there’s other more advanced interventions that can be done too. So, for example, if there’s people who have very pronounced pelvic floor dysfunction where the muscles are overly tight or spastic, there’s actually a method to inject Botox into the pelvic floor muscles to help those release. So these are the types of things that a referral to a specialized gynecologist or urogynecologist or GYN oncologist may be able to help with. Menopausal symptoms, so if someone is premenopausal and then through the treatments, whether it’s chemotherapy, which can cause premature menopause by suppressing ovarian function sometimes, or radiation to the pelvis that if it includes the ovaries can result in the end of ovarian function. So that could cause an earlier premature menopause. Or if there’s a surgery that involves removal of the ovaries, that can cause menopausal symptoms to develop. And if that’s the case, working with a menopause specialist can be important to understand if hormone replacement therapy would be indicated, would be helpful, if there’s risks or benefits that are important to know about. So the early menopause or premature menopause can cause symptoms like hot flashes, joint pain, mood changes, sleep changes, can affect, you know, bone health, heart health, all these different things. So in the event of an early or a premature menopause, it’s very relevant to meet with or discuss with a menopause specialist. This might be somebody’s primary care doctor, or it might be a gynecologist, or it might be somebody specialized particularly in this area. And then if somebody is having multiple sexual health concerns, as is usually the case, if there is availability for evaluation at a sexual health clinic, there are some cancer centers, not most, but some that have a sexual health clinic or a program where they can have sort of a comprehensive evaluation. So that’s the information that I wanted to cover today. And I hope we have some time to get some questions from the audience if we have any.

Julie Clauer 38:07 
That was fantastic. Thank you so much, what a fantastic, detailed explanation and just so practical for everyone. So thank you so much for what a wonderful, useful time with us. So thank you for that. I have some questions. And I have a couple that were submitted as well directly. So one was on the last slide, on the menopause specialist, I think you said sometimes it’s a gynecologist, you know, but somebody was saying they were having trouble finding one. So is there a certification or something that somebody should be looking for to figure out if somebody is a menopause specialist or so?

Dr. Agrawal 38:46 
Yeah, there is. So there’s a medical society. It’s called The Menopause Society. It was previously called NAMS, The North American Menopause Society. And they have a certification that physicians or other health care providers can obtain, to sort of show that they have a level of education and competency in menopause care. So people who can deliver menopause care, it doesn’t have to be a gynecologist, it can be an internal medicine provider or a family medicine provider as well. So to look on, find a provider under the NAMS or The Menopause Society area.

Julie Clauer  39:34 
Great, thank you. And speaking of that, a lot of our discussions are around discomfort with having these conversations with their oncologist or lack of feedback from their oncologist to get into some of these topics. So in terms of not even knowing what referrals somebody might need, who and how would you recommend kind of initiating those conversations or with who?

Dr. Agrawal 40:04 
Yeah, so that’s a really good question and that’s a question I get pretty much in every talk that I give on this topic, because many times that conversation has not been initiated. So you’re kind of coming in cold, not knowing how this question will be received. So a couple of different things. Number one, you can always reach out to the person on your medical team that you feel comfortable having this conversation with. So it may be the nurse or the nurse practitioner, or it might be the medical oncologist or the radiation doctor. So whoever you feel comfortable having this conversation with is an appropriate place to start. And that can at least lead to okay, what is the next step? Are there any resources? There might be resources, but it’s never been, you know, publicized or you’ve never been informed about it. Another tip that I give, just in terms of having this conversation is, for places that use a My Chart feature, one option is to send a My Chart message before your appointment, saying, I’m having these concerns, and I’d like to discuss them at my visit. Because that sort of like a kind of neutral, like heads up, you know, I want to talk about this, we’ve never talked about this before. And that will also allow your medical team, if they’re not already prepared, to be prepared to answer those questions for you. So I think that’s very helpful. And for example, if you see the nurse, you could say, I’m having these issues, and I’d like to talk to the doctor about it. So that kind of brings it up too. I believe that it should be our responsibility to bring up these questions. But I know that the reality is that that’s not happening across the board. So, you know, I, I just want to give you some tools and ways to kind of open that conversation. So for some people, it may help to have a support person with them to sort of support them in opening that conversation that might feel difficult if you’ve never had it before. Or to like write down your questions so that you make sure you don’t forget them. I always love when my patients come with a list of questions. And then we can review the list, and make sure everything was answered by the end of the visit. So just depending on what works with you, those are a couple of different ways to start and I know the reality is sometimes people feel caught between their different providers, like the oncologist might say, oh, I don’t know what to do talk to your gynecologist, and the gynecologist says, oh, you’ve had cancer so talk to your oncologist. So I know that people do get bounced around a little bit. And that shouldn’t happen, but I know it does. So I think just starting with a trusted member of the team, whoever that is, sending a My Chart message, writing down the questions so you don’t forget them, and having a support person can help.

Julie Clauer 42:53 
It’s great, I’m gonna cheat and pull from when you were talking to providers about providing a universal statement to say this is very common to make patients feel uncomfortable having the conversation but I think the stats you provided at the beginning of the of the of the discussion could also be a tool for a patient too to be able to say, I know this happens in 60% of patients kind of thing so that you’re kind of coming with this like macro. In the macro this was going on and so I want to talk about it could be helpful.

Dr. Agrawal 43:29 
Yeah, absolutely. So when I gave my talk at the ASCO GI symposium, which was really geared towards, oncology healthcare professionals what I suggested was to lead with something called a ubiquity statement. So that’s basically saying, this is common. So instead of starting with a personalized way, it could be I know that sexual health concerns like dryness are really common after a cancer diagnosis. I’m experiencing that what can be done about it? So that’s just a way to sort of open the conversation, normalize having the conversation, not normalize the concern, but normalize the conversation and then go from there. So that’s a great point. Thank you, Julie.

Julie Clauer 44:10 
Yeah, that’s great. Ubiquitous statement. I love that. Another thing that I’ve found super interesting here was about kind of how specific in the symptoms of pain. I know a lot of times people report, you know, pain with intercourse but getting very specific because those symptoms are treated in very different ways. So I think that that was extremely valuable and I’m just making a comment, I guess, is that people will say like I tried dilators and it didn’t work. But, you know, maybe like getting into that more, but this is the kind of pain I’m having or this is the kind of sensation might help to get to some other options which you provided here but also in those conversations.

Dr. Agrawal  44:53 
Very much so. So pretty much people know if the issue is dryness because a lubricant helps with that, but then the pain may not actually go away. So for the symptom of pelvic floor dysfunction, the way that many of my patients report that to me is that it feels like an internal pain inside the vagina, not like a dryness or a friction pain. And sometimes it’s described as a hitting a wall sensation. So there’s like a place where penetration seems like it’s painful or sharp pain, you know, anything like that. Anybody who’s having pain should be evaluated with a pelvic exam with their gynecologist to find out what’s going on because it could be something else. So that hitting a wall internal pain is sort of a clue to a pelvic floor issue. And then, of course, if people have had pelvic radiation, vaginal stenosis is a really significant issue. And that’s different than just the pelvic floor. So that’s when, in addition to using the moisturizers and the vaginal estrogen and the dilators, and the pelvic floor PT, sometimes I do refer patients on to a gynecologist or a, in our setting, to a GYN oncologist that may have to do a more in depth evaluation to find out if there’s like actually some adherence because in the real progression of vaginal stenosis, the walls of the vagina can actually adhere together. So it may not even be an issue that a dilator could ever fix, because the changes of the radiation can cause that change.

Julie Clauer 46:34 
Okay, and on that you mentioned that different providers feel differently about the timing of that. Is that based on the case situation, or just based on research, or both?

Dr. Agrawal  46:47 
Yeah, both. So for individuals that go through pelvic radiation, there’s some recommendations that talk about using vaginal dilators. There is not currently a consensus among the medical literature about exactly how this should be done. So this usually comes down to the radiation oncologist and the surgeon in terms of is everything healed? Is it safe to put anything in the vagina? Is there bleeding? Is there acute inflammation or swelling? So depending on what happened surgically? What kind of radiation was done? Was it external? Was it internal? What does the tissue look like and other factors? This will be individually recommended. So, at our center, we most commonly recommend for patients to start four to six weeks after the completion of radiation. But there are other places that recommend it during, so that’s very individualized and that should be discussed, based on individual situation type of cancer, type of treatment, and so forth. But what also happens a lot is that people are never told to use a vaginal dilator at all. And it’s not until the stenosis has really kicked in that they find out that this is something that exists. So we see that too, sometimes.

Julie Clauer  48:05 
Great, thank you. And then question about timing of when to seek out these specialists. And we talked just now about dilators, specifically, but then just with all the symptoms and discussion, what timing in terms of discussion?

Dr. Agrawal 48:21 
So if someone’s having any concerns currently, then that would be a good time to do it. In general, when, so if somebody is planning to initiate a treatment, you learn all about all the different side effects that are possible and so forth, but before starting a treatment or radiation or surgery, I think it’s important to add to the list of questions. Can this impact my sexual health? Will this potentially impact any part of my sexuality? And if so, is there anything that can be done to reduce the chance of that happening? Can we make any modifications that might reduce that in severity or likelihood? Or is there anything that can be done to help start to mitigate that from the beginning? Like what if we start vaginal estrogen right away? Would that be helpful, rather than waiting for problems to develop? So I think at the beginning of treatment, it’s a hard time because there’s so much going on, but in some of those early visits, that’s definitely a question that can be asked, will this impact sexual health? Can anything be changed to reduce that? Or can I do anything to help mitigate that? And then, at any point when a symptom arises, that would be another good time to talk about it too. I think especially, I’ll make note of it, especially if someone is premenopausal, and they are going into a treatment that will impact their ovarian function, I think it’s important to talk about am I likely to experience early menopause because of this and what will be done treat that or to manage that and who should I talk to about it? Because it won’t be the radiation doctor usually, or the surgeon, usually, who’s managing this. It would need to be another person for the most part.

Julie Clauer 50:13 
And is treatment induced like chemo induced early menopause, does it physiologically basically mimic like regular onset menopause? Or is it different?

Dr. Agrawal  50:26 
So, oftentimes, if someone is premenopausal, and they have chemotherapy, the chemotherapy has the chance to impact the ovarian function. So sometimes people will experience an abrupt set in menopause rather than a kind of perimenopause period of time. So it can be a more sudden menopause. And so, you know, people might be saying, why am I suddenly having hot flashes? And why do my joints hurt? And why do I creek when I get out of bed? And, you know, why are all these things happening? If that’s the case, the menopause may be temporary. So sometimes there’s a recovery of ovarian function. And that can even be a few years down the road. And other times there’s not, so it might be a temporary or it might be a permanent change.

Julie Clauer 51:12 
Okay. In terms of seeking out specialists, if you don’t want to go to a menopause specialist or can’t find one, would gynecologists, like, would that part of it be consistent, if not the other things related to treatment? Okay, great. Okay, well, thank you. I think that’s it on questions. Thank you so very much. This was extremely useful. And we will be posting it within Colontown and then also in Colontown University, which will be available to the public and I’m sure we’ll get a lot of views. So thank you very, very much, Dr. Agrawal.

Dr. Agrawal 51:49 
My pleasure. Thank you so much for having me. Bye.