Transcript of “What You Need to Know About Sexuality and Bladder Cancer Treatments”

July 11, 2023

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Rick Bangs:

Before we begin this episode, we want to give you a heads-up that it contains explicit language and candid conversations about bladder cancer and sexuality. We believe it’s essential to have open, honest conversations about these matters, to provide support and guidance to those who may be facing similar experiences. Bladder cancer can bring about significant changes and challenges in the realm of intimacy and sexuality, and we want to address these topics head on. Our guest, Dr. Daniela Wittmann shares her advice and insights in an unfiltered and uncensored manner. We understand that the explicit language used in this podcast may not be suitable for all audiences, and listener discretion is advised.

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast. This podcast is sponsored by the Seagen/Astellas alliance. I am pleased to welcome today’s guest, Dr. Daniela Wittmann. Dr. Wittmann is a clinical associate professor emerita in the University of Michigan’s Department of Urology. She’s a psychotherapist, educator and researcher. She’s also an AASECT Certified Sex Therapist and Sex Therapy Supervisor. In addition, she’s the associate editor of the Journal of Sexual Medicine. Dr. Wittmann has published research review, opinion articles and chapters on sexual issues in prostate and bladder cancer and other urologic diseases. Her clinical work has focused on helping couples cope with cancer and recover sexual intimacy. Dr. Wittmann, thanks for joining our podcast today.

Dr. Daniela Wittmann:

Thank you very much for inviting me and for covering this really important topic.

Rick Bangs:

We’re excited as well. So let’s start with the patient. Baseline function is an important input into any discussion you might have of male and female sexual problems and changes. Can you talk about the prevalence of male and female sexual problems?

Dr. Daniela Wittmann:

So first of all, let me tell you that I personally like to talk about sexual problems rather than sexual dysfunction, which is often the language used in scientific articles and sometimes even on websites because we live with problems and we solve problems, and I want this to be a very personal approach rather than a clinical approach, so starting with that. Then I want to say that the prevalence of sexual problems after bladder cancer treatment is relatively high. It is high partially because many men and women who have bladder cancer, any treatment are older, even though that is certainly not always the case. So for example, men already come to this with some degree of problems with erections and women may be postmenopausal and so may have vaginal dryness already in existence before coming to bladder cancer treatment. The literature describes the prevalence as being certainly over 60% and sometimes higher. But as you mentioned, baseline sexual functioning, that usually determines at least to some degree what kind of problems people are going to have. But of course, the extent of the cancer and the treatment will be the other determinant.

Rick Bangs:

Right. So what types of disorders would be typically noted in the bladder cancer community prior to diagnosis?

Dr. Daniela Wittmann:

You mean with sexual disorders? Is that what you mean?

Rick Bangs:

Yeah. Yes.

Dr. Daniela Wittmann:

Okay. The sexual problems that people might have or would be softening erections for men, that happens with age. For example, there could be as many as 25% of men who already have problems with erections and may be using medications such as Viagra or Levitra or Cialis to help with erections. Women may have low desire and vaginal dryness and may be using lubricants to help with comfort during sexual activity.

Rick Bangs:

Some of that’s a result of older population-

Dr. Daniela Wittmann:

Yes.

Rick Bangs:

… and smoking contributes?

Dr. Daniela Wittmann:

So there are certainly other things that can contribute. Smoking, extensive alcohol use can contribute, but so can other conditions such as high blood pressure, diabetes that can contribute and medications. Medications-

Rick Bangs:

Sure.

Dr. Daniela Wittmann:

… such as blood pressure medications and for example, antidepressants that can interfere with orgasm.

Rick Bangs:

I see. All right. So we agreed upfront that we were going to split the following questions by sex. So we’re going to talk about men first and then we’re going to talk about women. So we’re going to start with men again, and we’re going to focus on bladder cancer impact specifically. So we know that some patients are surprised by what is done during a radical cystectomy. So what happens? What’s done to the male anatomy during a radical cystectomy that would be relevant here?

Dr. Daniela Wittmann:

So the first thing that, of course, everybody knows when they come to the surgery is that they’re going to lose their bladder and that they will either have a diversion built or a neobladder, and that is something that everybody understands. It’s not always clear that people are told that they may also lose their prostate. That is often done because there’s a concern about the spread of the cancer into the prostate. When men lose their prostate, the nerves that surround it are responsible for erectile functioning and damaging those nerves, which can happen, which actually does happen, will interfere with men being able to have erections in the way that they used to, so they may start having erectile problems. So that is how the bladder cancer surgery cystectomy can interfere with men’s sexual functioning. As men lose the prostate, they will also lose ejaculate, which means that they may still be able to have the pleasure of orgasm, but they will not ejaculate.

Rick Bangs:

I think I remember hearing that the potential damage to the nerves was more extensive versus a prostatectomy, in other words, the radical cystectomy, because it was a more extensive surgery and which includes the prostatectomy, there was potentially more damage during a radical cystectomy than just a prostatectomy. Is that right?

Dr. Daniela Wittmann:

Yes, and that is at least partially due to the fact that while there’s often consideration given for men with prostate cancer to their sexual functioning, it is often far too overlooked for men who are treated for bladder cancer with cystectomy. So the nerves may be not spared like they might be for a prostatectomy, although more attention is being paid to that now.

Rick Bangs:

So given the scope of the anatomical impacts, patients would probably recognize that radical cystectomy is going to have an impact on sexual function.

Dr. Daniela Wittmann:

Yes.

Rick Bangs:

So talk a little bit about those impacts.

Dr. Daniela Wittmann:

So men suddenly realize that they are not the way that they were before. So most men wake up in the morning with an erection and can sometimes feel it happening as they are feeling erotically stimulated after cystectomy, they may still feel arousal, but their erection will not happen because of those nerves not doing their work, not being there to do the work. So all of a sudden, the spontaneous ability to have an erection disappears, and then that has an impact on the way that men might view themselves because it interferes with the man’s feeling healthy, masculine, able to perform. Many men worry about how it’s going to affect the relationship with the partner if they have one or a future partner if they expect to date at some point.

Rick Bangs:

Sure. So what about other bladder cancer treatments? So we’ve talked about radical cystectomy, but are there impacts of BCG and intravesical treatments, for example?

Dr. Daniela Wittmann:

Yes. Those interferences are often more temporary, but even having a cystoscopy can be unpleasant and for at least a period of time, and men might feel like he doesn’t feel like having sex. So desire will be affected, and the man may feel discomfort, pain, fatigue after these intravesical treatments. So for a period of time, the man may not feel like being sexually active. Some men also worry about affecting the partner. In fact, after some of these treatment are advised not to be sexually active for a short period of time to make sure that none of the treatments spread to the partner. But after a short while, it’s perfectly fine.

Rick Bangs:

Okay. Now what about chemo? Does chemo have an impact?

Dr. Daniela Wittmann:

Well, chemo can make a man feel nausea and fatigue. That in itself will deter anybody from feeling like being sexually active at all. For some men, these impacts can be ongoing and that can be extremely unpleasant.

Rick Bangs:

Okay, and immunotherapy?

Dr. Daniela Wittmann:

Immunotherapy can, again, have the effect of fatigue. So any kind of treatment that is available for non-invasive bladder cancer can cause a person really not feel like being sexually active.

Rick Bangs:

Okay. All right. So if I am a patient, a male patient, and it’s before my treatment, is there any way to predict my outcomes?

Dr. Daniela Wittmann:

Generally speaking, you would be well advised to consider that you will have sexual problems afterwards no matter what your baseline function is. However, if there is a consideration of sparing the nerves around the prostate, if you’re going to have a cystectomy, you may have a better chance of recovering erectile function, at least to some degree. If your baseline function is good, you have a better chance of recovery.

Rick Bangs:

Okay. All right. So based on your experience, how are sexual changes addressed in bladder cancer when the patient’s male?

Dr. Daniela Wittmann:

Well, I would say that there’s probably a plurality of physicians that will mention that there will be sexual problems afterwards and that there may be some treatments that are available to help with erectile functioning. This is not addressed most of the time with women. There is actually a study that was published I think in 2019 or 2020 from Johns Hopkins University where urologic oncologists were asked how much they discussed sexual concerns with their male and female patients. They certainly discussed them less with female patients, and they mostly didn’t discuss them very much at all.

Rick Bangs:

Wow. Okay.

Dr. Daniela Wittmann:

So there is a issue in the urology oncology community about really making this a normal part of the conversation when patients come for their bladder cancer care. I think the awareness is rising, and I think one can be optimistic and podcasts like this are really helpful.

Rick Bangs:

Right. Right.

Dr. Daniela Wittmann:

I think patients are beginning to advocate for themselves as well.

Rick Bangs:

Right. Right. Do we have any data on male physicians versus female physicians as it relates to this question?

Dr. Daniela Wittmann:

We do not, but given the fact that only about 8% of physicians are women, it’s really currently mostly on the men. But I think that probably everybody is having to look at themselves and think, “Well, am I addressing it or not?”

Rick Bangs:

Right. Right. Okay. So if I’m a male patient, how do I initiate this fairly difficult conversation? Do you have any suggestions, icebreakers, anything you can suggest to make it a little easier for me to initiate this conversation as a man?

Dr. Daniela Wittmann:

I would suggest that you let your physician know in advance. You might even want to forward some questions that you might have, such as, “How are my sexual problems related to my bladder cancer treatment? Are there any treatments for my sexual problems? Who can best provide them? Can you refer me to the people who can help?” Because your urologic oncologist is not going to have a lot of solutions for you, but may be able to refer you. So writing it down may help, then forwarding it to your clinician and letting them know that you’re going to be addressing that should help.

Rick Bangs:

Yeah, that sounds like great advice. All right. So what treatments are available to male patients to get their sexual function back and the sexual pleasure back?

Dr. Daniela Wittmann:

So let me emphasize again that sexual pleasure is still available. Sometimes people don’t separate ejaculation from orgasm. The sexual pleasure of orgasm is governed by a nerve called the pudendal nerve, and that is not necessarily damaged during the surgery. The nerves that govern erections are the ones that are damaged. So the pleasure with stimulation can still happen, and men don’t always know that they can have an orgasm without an erection. So stimulating a flaccid penis can lead to an orgasm, so that’s something that I wanted to emphasize. When it comes to erections, there are medications and devices that can help. I already mentioned medications such as Viagra, Cialis, Levitra, they can help erections, but sometimes are not sufficient. So men are able to be prescribed injections with medications that can create an erection in 10 or 15 minutes. There are also devices such as vacuum erectile devices that can help a man pump up an erection.

All these can be taught in a urologic clinic. Some of them must be taught there such as the injections. Then men can work with those when they go home and they can work with their partner. So erectile function is something for which we do have treatments and men can experiment with what works best for them. There are some men who at some point elect to have an implant, which means a device that is implanted into their penis that can give them an erection anytime they desire. There is a pump for saline liquid with a reservoir in the belly that operatively is inserted into the body. Anytime a man wants to have an erection, he can pump up the penis with that internal device. This is something that does not interfere, again, with the pleasure of orgasm and is something that can be discussed with their healthcare provider.

Rick Bangs:

Okay. How successful are these kind of treatments? So if I’m going into the surgery, most men are going to have some issues with a radical cystectomy.

Dr. Daniela Wittmann:

Yeah.

Rick Bangs:

There’s going to be some sexual changes. So how successful are we in getting back sexual function and sexual pleasure?

Dr. Daniela Wittmann:

So now we really have to talk about the combination of biology and psychology. It is definitely true that after some experimentation, a man can find the medication or device that will work for him. However, there’s a great feeling of loss and feeling of grief about losing the spontaneity of erectile function that affects many men. For some men, that makes it difficult to persist with trying to find a solution. So overcoming that, coming to terms that now sex is going to be different ’cause it’s not going to be spontaneous, it’s going to have to be a little bit more engineer is one issue. The other is the cooperation with a partner, because the sex life change is not just for the patient but the partner as well. So the couple has to really work together as a team to recover their sexual intimacy in this very different circumstance, almost discovering a new sexual paradigm.

What I often recommend to men and couples is to also focus not just on penetration and intercourse or for gay men, that would be maybe anal intercourse and erectile function, that other pleasurable activities such as manual stimulation of the penis or oral sex or using a vibrator can also produce great pleasure. In the context of a affectionate and empathic suite, interaction can be very, very pleasurable. So what I advocate is for an expansion of sexual repertoire to these other activities so that there are more choices and the emphasis of on erectile function and the problems with it don’t overwhelm the patient and the partner.

Rick Bangs:

Okay. Is being proactive early after my surgery, is that important?

Dr. Daniela Wittmann:

Yes. So one of the things that happens after surgery, and this is another issue that comes up when the prostate is removed, the penis can become a little shorter and that doesn’t affect everybody, but some men it does affect. Then using the vacuum erectile device or vacuum pump can be helpful for the maintenance of the length of the penis. In general, the sooner people get back to sexual activity, the more comfortable they’re going to be with using medications or devices and finding new ways of having pleasure. Because when people leave it alone and wait, they’re much less likely to come back to sexual activity.

Rick Bangs:

Okay. All right. So now we’re going to go back to the impacts, and this time we’re going to talk about women. We talked about patients being surprised were male, but I think we would probably agree it’s even more surprising in part because the communication is so bad coming from the clinicians. But what’s happening to the female anatomy during a radical cystectomy?

Dr. Daniela Wittmann:

So during the radical cystectomy, women can be affected greatly because oftentimes, as I said about the men, the prostate can be taken. For women, the uterus can be taken, ovaries can be taken, even the vagina can be taken, even the urethra can be removed depending, again, on the extent of the surgery, so women can lose a lot. When they lose their ovaries, most of them, the uterus, when they lose their ovaries, if they’ve already not been in menopause, they will be pushed into what’s called a surgical menopause, which means that things like low desire and vaginal dryness will appear in a woman who wasn’t experiencing that before. Then, if a woman loses her vagina or a portion of her vagina is going to make intercourse impossible or difficult.

If the woman loses the part of the urethra that is closest to the surface, she may also lose the blood vessels of the nerves that are responsible for the experience of pleasure in the clitoris. So she may lose the innovation and the blood flow that enable orgasm. So women really need to have a very clear conversation before the surgery to find out what they’re likely to lose and what should be able to be preserved. So again, this is an area in which progress is being made on the surgical side because there’s more attention being paid to this. The other thing that is newer is that even though women may be older, they should not be discounted as not being interested in sex.

Rick Bangs:

Right.

Dr. Daniela Wittmann:

So those conversations need to be had before the surgery so that women can, with their physicians, make decisions about how this is going to proceed, obviously based on oncological control first.

Rick Bangs:

Right. Right. So if it’s not brought up, bring it up and ask questions.

Dr. Daniela Wittmann:

Yes. Yes. I can certainly say that I have seen women who were perhaps 50 years old and they had a cystectomy and their urinary function after the cystectomy was perfect, wonderful. But they were in menopause, and they didn’t know how they got there-

Rick Bangs:

Right.

Dr. Daniela Wittmann:

… ’cause nobody talked to them.

Rick Bangs:

Wow.

Dr. Daniela Wittmann:

Yeah.

Rick Bangs:

Wow. Okay. So now we’re going to move from radical cystectomy to some of the other bladder cancer treatments and those impacts on women. So BCG and the intravesical treatments relative to women?

Dr. Daniela Wittmann:

Yes. So vaginal discomfort, discomfort in the urethra in bladder, that leads to low desire and maybe not interest in having sexual activity. The need to wait to have sexual activity after this treatment, all of these are interruptions and negative effects.

Rick Bangs:

Okay. All right. Now, chemo and immunotherapy, I’m assuming some similarities to the male impact, but I’ll let you confirm.

Dr. Daniela Wittmann:

Yes. Yes,, they are very similar. One of the things that chemotherapy can do is it can affect mucus membranes, and so the mouth, the vagina, the anus can develop inflammation and blisters and that would certainly be very unpleasant for any kind of sexual activity. So the impacts can be quite significant and women, just like men, should be warned so that they don’t panic and they realize that many of these effects may not be permanent but unpleasant at the time.

Rick Bangs:

Okay. All right. So same question as before when we asked for the men. Can we predict the female patient outcomes before their treatment?

Dr. Daniela Wittmann:

Well, I would say, again, everything usually is based on pre-treatment functioning, but women who have radical cystectomy are very likely to lose their ovaries; although, again, there’s an attempt to spare them if that’s possible. So women really need to understand that their sexual functioning may really change, that they will now have low desire, they may have vaginal dryness, and they’re going to have to work with that to get more comfortable. Similarly, you can’t really predict how women will be affected in the long run, but certainly in the short run, everybody’s going to have trouble with the intravesical treatments and chemotherapy.

Rick Bangs:

Okay. All right. From your experience, and I think you’ve already given us some hints as to what the answer’s going to be, but how are sexual issues addressed in bladder cancer when the patient is female?

Dr. Daniela Wittmann:

There are definitely some things that can be helpful. So for things like vaginal dryness, there are vaginal lubricants and vaginal moisturizers. Many of them are over-the-counter, so they don’t have to be prescribed. Now, here is something that’s really special for women with bladder cancer that for example, women with breast cancer or ovarian cancer cannot approach. That is that women with bladder cancer, unless they have a history of breast or gynecological cancer in their family could be eligible for topical estrogens, which can really help with plumping up the vaginal walls and making them be able to lubricate better. So hormonal replacement, topical hormonal replacement can be available to women with bladder cancer. Those are the women who actually still do have a vagina that has not been removed. There is a medication called flibanserin that is available for women to help stimulate their sexual desire, and that is a prescription medication that has to be discussed with the gynecologist. Again, it’s not hormonally based, and this one, it’s not hormonally based and can be made available.

Now, women who have lost their vaginas or portions of their vagina may be eligible or may choose to have a vaginoplasty it’s called, but to have a constructed vagina so that they can have intercourse with their partner. What’s important about that is realizing that the vagina’s not going to have the same sensation, that it’s going to be a vagina that can function for an ability to have intercourse, but it’s not going to be a source of pleasurable sensation. So that is something to be aware of. The other thing that I actually want to emphasize is for women to realize that they need to discuss with their doctors, if at all possible, to preserve the portion of the urethra that has the aberration and the blood flow for the clitoris so that they can preserve the sexual pleasure, because stimulation of the clitoris can lead to orgasm whether you have a vagina or not. That is something that’s important not just to the female patients, but also to their partners, and it protects the sexual activity for the couple.

Rick Bangs:

Okay. So if I’m a female patient, how do I initiate this difficult conversation? Do you have any suggestions for me, icebreakers and specific questions that I might ask?

Dr. Daniela Wittmann:

So I think for women especially, it’s really, really important to say, “Look, what is going to happen to me during the surgery and what parts of my body am I likely to lose, and how is it going to affect not just my urinary function, but also my sexual function?” Again, women sometimes have a harder time raising it than men in a session with their doctor, unless they feel very comfortable with their doctor. They may want to write it down. They may want to send that ahead of time. They may want to speak to the nurse practitioner who works with that physician, somebody who can facilitate the conversation so that they can have it with their doctor, they can maybe engage their partner. That’s true for men too, in having that conversation with their physician so that they can tag team.

Rick Bangs:

Okay. I want to pivot to that specific question, broadly, men and women. I want to move to this question about who can help me because you’ve mentioned some players, but let’s just go through the list of people who could help me with my questions and with my treatment here.

Dr. Daniela Wittmann:

I’m so glad you asked me. So no patient should assume that their oncological provider is going to be able to fully help them. It’s really not what they do. They are saving lives. That is their job, but they can collaborate with people who can help in the sexual realm. So first of all, sex therapists are trained to address sexual problems of any kind. If they are not very well aware of what sexual problems go with bladder cancer, they can educate themselves and they can also be in touch with the oncological urological oncological provider and learn from that person and get articles. The patient can also educate them about what’s difficult for them. So that is the kind of person that can help them psychologically, that can give them tips for how to function better sexually for how to work with a partner. They can include the partner.

They can work on all the sexual issues that the person who has had this bladder cancer treatment, regardless of what the treatment was, how to get back their sexual pleasure, enjoyment of sex and sexual intimacy with a partner. Sex therapists exist in every state in the United States, and they can be found on the website of the American Association of Sexuality Educators, Counselors and Therapists, so it is aasect.org. On their website, a person can click on their state and all the sex therapist with their qualifications and with their scope of practice will pop up, and then you can find somebody who is near you, get in touch with them and try to get help from them, so that’s one. Another one is many urology departments have urologists who specialize in sexual medicine who may be able to help. So that is something to ask the oncologist about.

“Is there a specialist in sexual medicine in the department that I could talk to? If a person is depressed, mental health counseling can be very helpful. Then once the issues are identified and sex comes up as a concern, that person can also refer to a sex therapist. Sometimes, especially women may have trouble with their pelvic floor because as they are uncomfortable, their pelvic floor may get tense and then it makes it difficult to experience pleasure, maybe allow intercourse. Physical therapists who specialize in pelvic floor rehabilitation can be really helpful there. So there are these different providers that can be helpful when a person is uncertain about how to get help for their sexual problems.

Rick Bangs:

That’s great. So when should I start this conversation?

Dr. Daniela Wittmann:

At the time of diagnosis. As soon as a person knows that they going to have bladder treatment, no matter what the kind is, this is time to bring it up. Now, understandably, many times people feel so overwhelmed by the cancer diagnosis and the need to have cancer treatment, especially if it’s a cystectomy, it may be hard to focus on this. In the way that I understand it from my practice, it really is the clinician’s job to do it because they are the ones who are aware that these are the consequences and that the patient may be overwhelmed.

So they should signal to the patient that even if they have trouble talking about it now, some aspect of it should be talked about, such as the extent of the surgery for cystectomy and that there’s help afterwards when people feel ready to address. It may be six months after surgery, but people still get back to it when they start feeling better ’cause sexuality is such an integral partner of who we are. It can be so important to couples that we have to have a way of addressing it regularly to make sure that whoever gets to a point wherever in that trajectory of living with bladder cancer, you actually have an opportunity to discuss it and find solutions.

Rick Bangs:

Right. Right. So have the conversation as soon as you can. That’s-

Dr. Daniela Wittmann:

Yes.

Rick Bangs:

… seems to be the answer. Okay. So I am absolutely certain there are partners listening to this podcast and they’re wondering, “What role can I play as a partner?” So what advice do you have for partners?

Dr. Daniela Wittmann:

You can obviously be a great supporter and identifier of these issues. Sometimes partners feel guilty because they have a intact sexual interest while their partner is going through bladder cancer diagnosis and treatment. Don’t feel guilty. It’s normal for you to want to be sexually intimate with your partner, but you’re going to have to work with the circumstances. So the partner can be very helpful in facilitating these conversations, in being supportive in understanding that the patient for a period of time may have difficulty participating in sexual activity, but really be also hopeful that somewhere down the line they should be able to get to a point where they can figure out sexual intimacy again, especially if they’ve enjoyed it with each other and can communicate. Partners should also be aware of these resources because sometimes partners are the first ones to contact a sex therapist and say, “Help, I don’t know what to do.” So getting the help could be also the partner’s role.

Rick Bangs:

Okay. So if I want to look for more information, where might I look as a patient or a partner?

Dr. Daniela Wittmann:

So I mentioned the American Association of Sexuality Educators, Counselors and Therapists, their website, aasect.org. There’s also the Sexual Medicine Society of North America. They also have a list of providers there, and some of them may be local. These days people do a lot of telemedicine, so they may become providers across state lines if they’re able to do that, so that would be another website. The Society for Sex Therapy and Research will also have providers listed on the website, and then just Google sexual health support near me, and see if there are any sexual health clinics. Sometimes people don’t know that there’s a sexual health clinic even in their own institution where they’re getting their cancer care.

Rick Bangs:

Right.

Dr. Daniela Wittmann:

For example, Dana-Farber Cancer Institute has a sexual therapy clinic, so does Memorial Sloan Kettering, so does the University of Michigan. There are cancer centers that have their own sexual health clinics, so that’s another thing to look for. Women can also look for any specialist in gynecology who provide menopause care ’cause they can be very helpful as well.

Rick Bangs:

Okay. All right. Later on, we are going to give our listeners the address for the BCAN website where they can also find information. All right. I’m wondering if you have any specific advice for the LGBTQ+ listeners?

Dr. Daniela Wittmann:

Yes. So sometimes the barriers to care are greater for people in the LGBTQ community because of maybe discomfort of disclosing to providers, to healthcare providers. Maybe healthcare providers are not very welcoming and are not really asking the right questions, assuming that everybody’s heterosexual. This has been a problem for a long time, although, I think that is changing. But I think just like anybody, everybody has a right to tailored appropriate sexual health care. So a person who is gay or bisexual or trans needs to realize that they have a right just like everybody else and follow the same protocol of writing down the questions and bringing them to their providers and making their provider respond to them. If they find that their provider is not very responsive, sometimes people end up changing providers because they feel like, “If you’re not going to be recognizing who I am, then you’re not really a good healthcare provider for me.”

But I’m speaking, this is an extreme. I think, again, in many cases, the healthcare providers really, really want to provide the care that they themselves may feel inadequate in providing or are not sure what the resources are. So sometimes patients have to advocate for themselves, and sometimes that burden is greater on people in the LGBT community. I should also mention that support groups, LGBT support groups can be very, very helpful because they are more uniquely able to provide support. For example, I don’t know if you’re familiar, but there is a website, malecare.org, which has been providing support certainly for prostate cancer patients, but it’s totally relevant to bladder cancer patients, for male patients.

Wonderful chat groups, wonderful resources, lots of information that is available there, so that’s a very good website. Certainly, any LGBT resources like clinics, there’s a large LGBT clinic in Boston, but may not be everywhere. There is, by the way, a LGBT clinic in Chicago that was just recently open that focuses precisely on sexual health. So look at resources around you, but certainly, talk to your healthcare provider and ask for those same resources because most sex therapists, well, all sex therapists really provide care for LGBTQ patients. That is totally within scope, so that should not be hard to find. So go to that website, aasect.org, and find a sex therapist near you.

Rick Bangs:

Okay. All right. So speaking of near you, some patients are in rural communities, they’re not able to get to a major cancer center in a major city. So what advice do you have for folks like that?

Dr. Daniela Wittmann:

Probably online resources. BCAN for one thing, has quite a few sexual health resources, videos, information. Actually, the American Cancer Society has a really nice page on sexual problems after cancer, and they have a page for the LGBT community as well. So that’s actually not a bad resource for people who are in outlying areas. Again, many sex therapists provide care online, Astella Visits, so people who are in rural communities could reach them.

Rick Bangs:

Yeah, I was going to ask you about that. So virtual is an option in 2023.

Dr. Daniela Wittmann:

Yes.

Rick Bangs:

Excellent.

Dr. Daniela Wittmann:

Absolutely. Yes, and yes, and Medicare covers it.

Rick Bangs:

Ah, good to know. Good to know. Okay, so any final thoughts on our topic?

Dr. Daniela Wittmann:

My final thoughts are that in most cases in cancer, people live for long periods of time and some people survive forever. While we are living, we are all entitled to have healthy sex lives, and we are entitled to have as much pleasure sexually with a partner or on our own as we are capable of. So everybody should feel completely entitled to think of their sexual health as a part of their overall health and look for resources to help them achieve their sexual goals so that they can feel like they are enjoying life as much as possible.

Rick Bangs:

I love that, you’re entitled. That’s what we want our listeners-

Dr. Daniela Wittmann:

You’re entitled.

Rick Bangs:

Exactly. Okay. So Dr. Wittmann, I want to thank you for giving us a better understanding of the sexual changes experienced by bladder cancer survivors and how patients can partner with the medical team to address these changes.

Dr. Daniela Wittmann:

Thank you very much for having me.

Rick Bangs:

It’s our pleasure. If you’d like more information on sex and bladder cancer, please visit the BCAN website, www.bcan.org, and use sex as your search term. In case people would like to get in touch with you, could you share your email or Twitter handle or any other information you’d like people to have?

Dr. Daniela Wittmann:

Sure. I can share my email. It’s D-W-I-T-T-M-A-N-N@M-E-D.U-M-I-C-H.edu, that’s University of Michigan. My Twitter handler is @D-R W-I-T-T-M-A-N-N.

Rick Bangs:

Excellent. Thank you. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. If you like this podcast, never miss an episode by clicking on the subscribe button on your favorite podcasting platform. Rating our podcast also helps us reach more people. Please feel free to leave a review as well. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Wittmann.

Dr. Daniela Wittmann:

Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.