Let’s Talk About Sex After Bladder Cancer

October 5, 2026

Transcript

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 am 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.

I am pleased to welcome Mary Dunn back for her third podcast. Mary is a certified adult nurse practitioner joining University of North Carolina Urology and Medical Oncology in a multidisciplinary role in 2010, and as adjunct faculty for the UNC School of Nursing since 2011. Mary was the first nurse practitioner invited to attend the annual BCAN Think Tank and has attended each year since 2012. She was a founding member of the North Carolina Triangle Chapter of BCAN and has probably served on its board from 2013 to 2023. She helped establish and now co-chairs the BCAN Survivorship Task Force, which consists of providers, patients, and caregivers, identifies gaps in bladder cancer survivorships, and develops resources to improve this aspect of patient care.

This episode 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 significant changes and challenges in the realm of intimacy and sexuality, and we want to address these topics head on.

Mary, thanks for coming back for a third podcast.

Mary Dunn:

Thanks for having me for a third time, Rick. It’s always a pleasure to be back.

Rick Bangs:

Oh, it’s going to be great. So at the Spring Patient Summit in Baltimore and more recently at the Fall Summit in San Diego, you co-hosted a segment titled Between the Sheets: Sexual Health After Bladder Cancer Diagnosis. You co-hosted that with Krisztina Emodi, who’s a nurse practitioner at UCSF. So tell us, why did you choose this as your specific topic?

Mary Dunn:

Many reasons. First of all, it’s something that Krisztina and I are both very passionate about. Yes, I use the word passionate in a discussion about sex, and you’ll get a few of those here and there. And we wanted to discuss a topic that has been part of the work we are doing with the survivorship task force.

In the spring of 2023, the task force sent out a survey to patients, which got the ball rolling on helping to identify areas that are important to patients or who have had a bladder cancer experience. And we also got great feedback at earlier patient summits and at breakout sessions at the think tank, and it became clear what topics were important. So things like defining survivorship and survivorship care plans, emotional and mental health, exercise, nutrition, and you guessed it, sexual health and intimacy.

So as a group, we prioritized these big topics and started working on different aspects of them. Currently, we’re working on a fact sheet and space on the survivorship section of the BCAN website in addition to having these presentations at the summits and incorporating important survivorship topics like this at the think tank. And in the meantime, other surveys have been done, at least one of them through BCAN, that shows that this topic, sexuality and intimacy is really important to patients and their caregivers and they want to learn more.

Rick Bangs:

Okay. But this is a difficult conversation for many to have with their healthcare providers, and I’m sure you see that when the conversations commence on your side. So are there any tips you can offer for patients that might be uncomfortable bringing the topic up?

Mary Dunn:

I think that it’s really important to reiterate to everyone listening that sexual health is part of overall health. And if it’s important to patients, it’s important to us, so healthcare providers. And some barriers that I have come across that might make it uncomfortable for people are things like if they’ve never talked about their sexual health with someone who wasn’t their intimate partner, if they were raised in a household where talking about sex may have been shamed. Sometimes there are religious or cultural barriers. And sadly, people who have been victims of sexual abuse or sexual assault, this can be a very, very sensitive topic. Or if folks just don’t want to “bother”, and I do use that bother in quotation marks, their providers, or think it’s not important or/and frustrated by all the changes, et cetera.

So some tips. You don’t have to wait for your healthcare provider to ask about sex. If it’s important to you, it’s important enough to talk about. And sexual health may not always be discussed during appointments because there are many other aspects of cancer care to address, but it’s okay to start the conversation yourself.

So I try and tell my patients it’s okay to be direct. You can simply say things like, “I’m having some changes in my sexual health and I want to talk about that,” or, “Will my treatment affect my ability to have sex? I’m worried about how this treatment will affect intimacy with my partner and what are their treatments to help with these changes?”

I think another barrier sometimes is asking about these things before treatment begins. We’re so focused on the diagnosis and the shock of that and getting a treatment plan in place, but some people are very mindful of that and will simply ask, “What changes should I expect and what can we do to prevent and manage them?”

Also, patients and their caregivers are welcome to ask who can help. So whether it’s their primary oncology team versus a specialist. And never assume that nothing can be done. Sexual changes after bladder cancer treatment are common, but that doesn’t mean that patients simply have to accept them. There might be lots of options, which I’m sure we’ll talk about. And keep asking. Sexual health can change over time. If something becomes a concern months or years after treatment, bring it up at a follow-up visit.

And then lastly, talk about what has changed. Sexual health certainly includes much more than erections or intercourse. So telling your provider if you’re experiencing changes in desire or libido, interest in sex, for women vaginal dryness, discomfort, or pain, if there’s changes in orgasm, if there’s urinary leakage, body image or confidence and the emotional and mental struggles that can come along with all of this. So as you can see, this is very complex and it can be very complicated.

Rick Bangs:

So I have to ask, is there a specific person in the clinic that you should talk to?

Mary Dunn:

I tell people to start with their primary team, whether it’s the oncology team, the urology team, the radiation team. And if whoever they talk to first either doesn’t know how to help, that’s not their area of expertise, then folks can certainly refer out to people who can. ‘Cause there are people who subspecialize in the treatment of sexual dysfunction at all different kinds of levels, and referrals to those people I think is really an essential part of cancer care.

Rick Bangs:

Right.

So you speak about having realistic expectations as a survivor. So can you tell us what do realistic expectations, what does that look like?

Mary Dunn:

Yeah, so things change. Many things that impact sexual health, not just the anatomy parts, but the emotional aspect, the side effects from intravesical therapy, the fatigue from everything that’s thrown at people, the grief, body image, et cetera. And I realize this is easy for me to say as someone who isn’t going through this, but in general, the farther apart or the bigger the gap between our expectations and reality, the more likely we are to be disappointed.

And I think there’s a difference between being realistic and being pessimistic. So being pessimistic may sound something like, “Oh, there’s no point in trying treatments for any of this. It’s never going to be the same again,” versus a more realistic statement of, “I’d like to try this treatment for my sexual health, even though I don’t know how much it will help.” And the thing is that helps change mindset, and we really don’t have any way of predicting which patient will experience which sexual side effects to what severity and for how long and what treatment will work or not.

What we do know is that a lot of what we do can impact sexual health for men and women of any age at any stage. So on our side of the street, from a provider standpoint, helping set those realistic expectations is important. Letting people know the possible side effects and that while there are options to manage many of them, we just don’t know how each one will work for each individual person.

And sexual function may never be the same as it was before the cancer diagnosis and treatment. So modifying to the changed body and experimenting with different sexual practices and intimacy may be part of the new outlook. And intimacy is just as important as sex and intimacy is a state of close, familiar and affectionate personal connection with another person.

Rick Bangs:

What do we know about sexual function for men and women with non-muscle invasive bladder cancer? We’re going to start there. And can we assume that it’s going to vary by the specific treatment that you have?

Mary Dunn:

Sure. Yeah. So sexual function and sexual changes related to non-muscle invasive bladder cancer treatments really has not been as well studied, but we do have some information based on a few studies and also patient reported in various surveys.

We know that things that impact sexual health post-local cystoscopy includes post-procedural pain, which can lead to anxiety about having a sexual encounter. Commonly, we’ll have folks report irritated urinary symptoms related to intravesical treatments, sometimes fever and fatigue. Also, not knowing whether or not they’re going to hurt their partner. And that goes both ways. So patients are worried that they could harm their partner with exposure to the cancer treatment that was put into their bladder, and partners are worried that they might cause extra pain or discomfort to the patient who’s going through this experience.

So some specific recommendations for specific treatments include, so we know with BCG, no intercourse for 48 hours and after that using a condom. With other medications like Inlexzo, effective contraception is required during treatment and for six months for women or three months for men after the final removal of the device. And for nadofaragene, precautions are recommended regarding pregnancy and conception and things like risk of infection. And if I may touch on one side effect in particular that’s highly associated with intravesical treatment is dysuria or painful urination, which I think we can all agree on is quite the buzzkill, a little mood killer.

There are some potential remedies for that. Krisztina Emodi, who works really hard with me on this aspect of our survivorship task force, has a lot of good tricks up her sleeve that she’s taught me. So scheduled ibuprofen or an anti-inflammatory for a week if it’s not contraindicated for a particular patient, overactive bladder medications like mirabegron, hydroxyzine for bladder pain, doing timed voiding. So in other words, voiding every two hours during the day while awake just to do some bladder retraining and reminding your bladder that you are in charge of it, not the other way around, as much as-

Rick Bangs:

I’m in charge.

Mary Dunn:

You like being in charge. And then things like eliminating bladder irritants, so caffeine, alcohol, anything that kind of overworks the bladder. But we really need more research in this area for our patients with non-muscle invasive bladder cancer. So that’s a big plug for that too.

Rick Bangs:

Yep. Yep.

Okay. So now we’re going to switch to muscle invasive bladder cancer.

Mary Dunn:

I tend to break up patients with muscle invasive bladder cancer into three groups when I think about treatment related impacts on sexual health. So folks who’ve had cystectomy, systemic treatment with chemo or immunotherapy and also radiation therapy.

Starting with systemic treatments, so whether that’s chemotherapy, immunotherapy, targeted therapy, so getting things via IV, these things can be nausea, vomiting, fatigue, numbness, tingling, skin changes, rashes, diarrhea, anemia, so low blood counts, which can impact fatigue, hair loss. Again, mood killers, right?

Rick Bangs:

Yeah. Bunch of buzzkills in that list.

Mary Dunn:

Yeah, no. Who wants to have sex while you’re both fatigued and want to vomit? Not many people. I mean, some people, but not many people. And sometimes on the medical oncology side, which I also do, sometimes we don’t always remember these things. We think about, oh, it’s the cystectomy part that’s going to really impact sexual health. But no, these things are huge too.

And with radiation fatigue, which I think is an ongoing theme here, irritative urinary symptoms, skin changes, vaginal dryness, painful intercourse, pelvic muscle weakness. And then of course we think about cystectomy.

Some things are universal for men and women. So things like postoperative fatigue and other postoperative complications, body image issues for folks who end up having urostomies, potentially worrying about the appliance not fitting right and having some leakage during a sexual encounter, incontinence for folks who have neobladders, getting used to new scars on the body too.

But there are some things that are unique, and I’d like to talk about women first because ladies first in all aspects of this talk, okay, if you get my drift, right?

So for women, during cystectomy, there’s a bundle of nerves against the vaginal wall that may be resected. And when that happens, it reduces blood engorgement to the vagina and the clitoris. And as a result, there’s loss of lubrication, which can lead to sexual arousal disorder and pain. And in many cases, removal of the anterior wall of the vagina occurs. So this is this component of this classic anterior pelvic exoneration language that we used that’s performed because the anterior vaginal wall lies immediately behind the bladder base and the urethra, which is the reproductive organ structure that is most often involved by direct tumor extension from bladder cancer.

So while there are vaginal sparing techniques, this is typically reserved for unique cases, but it’s being more widely studied now as an option. So I think in the coming years, we’re going to see this technique used more often. But for now, in thinking about when the vagina is resected, that leads to narrowing and shortening and painful intercourse.

And another really big component to consider for women is that the reproductive organs, so the uterus, ovaries, fallopian tubes are almost always removed. And even for women who are postmenopausal, this can be an emotional scenario or a sense of loss. Even if they’re kind of beyond childbearing age or not planning on having any more children, having that part of you removed can definitely be a grieving process. And for women who are pre or perimenopausal, we’ve got to educate women about the loss of hormones when those ovaries are gone. And rarely we treat women who are still of childbearing age, and this is a huge discussion about how to effectively treat their cancer in the context of their reproductive health.

For our male patients, more often than not, the prostate gland is removed to ensure there’s no involvement by bladder cancer. So the prostate gland is a gland that secretes the ejaculate, that’s its job. And the nerve bundle that helps control erections wraps around part of the prostate. So when that gland is removed, the chance of damaging those nerves is high. So many men may experience erectile dysfunction, which means it’s difficult to get or keep or maintain an erection, which is just a word that means firm penis.

And when the prostate is removed, something else to think about is that men will no longer secrete that ejaculate during an orgasm, which can be alarming, but it’s not harmful. And while a lot of our patients are older, we shouldn’t make assumptions about childbearing as there have been patients who wish to do sperm banking before treatment who are up there in age, and it’s why we don’t make assumptions, right?

Rick Bangs:

Right.

Mary Dunn:

And another little kind of tidbit that I like to throw out there for our male patients is it is still possible to have an orgasm without having a full erection. So just a little tip there words-wise.

Rick Bangs:

Okay.

And both men and women may say to you that they’ve experienced some length issues, I’m using air quotes, you can’t see it, or some shrinkage after bladder cancer treatment. And I’ve heard patients tell me that it was a surprise to them. So can you describe these issues and how they get treated?

Mary Dunn:

Yeah, these are the kinds of surprises that we don’t like, right?

Rick Bangs:

Yeah, I’m thinking.

Mary Dunn:

Just don’t like these surprises.

Well, for male patients, when the prostate is removed during cystectomy, there’s a few reasons why decreased penile length might occur. So number one, the nerves need time to wake up, for lack of a better way of putting it. So as previously mentioned, the nerves that control erections run right around the prostate and can be damaged during surgery. And while the nerves aren’t working normally, erections don’t happen on their own.

Number two, erections keep the penis healthy and they can stop after surgery. So normally men have several erections during sleep every night, whether they know it or not, and these bring in a fresh supply of oxygen-rich blood that keeps the erectile tissue stretchy and healthy. And after surgery, while the nerves are recovering, these erections stop. And without that regular blood flow and oxygen, the tissue can become less elastic and a bit stiff, which can make the penis shorter.

And then number three, the plumbing gets rearranged.

Rick Bangs:

You’re removing some of the pipes, aren’t you?

Mary Dunn:

Right, exactly. That’s why the urologists are plumbers, right?

Rick Bangs:

Yeah, exactly.

Mary Dunn:

It’s true. It’s so true.

When we do that and the prostate is removed, the urethra is also manipulated. So this pulls part of the tube, the urethra tube, slightly up into the body, which can cause shortening. Sometimes a so-called penile rehab program can help with this, such as taking pills to help with erectile dysfunction, and also using a vacuum erection device, which is essentially a penis pump that can draw blood into the penis and may help protect some of that length. So using it, think of it as physical therapy for the penis. Truly, that’s what it is. So reminding the blood where to go essentially.

And for our female patients, as I mentioned earlier, that anterior wall of the vagina can be removed, which leads to vaginal shortening. And one of the techniques that may be helpful with this is the use of vaginal dilators. So what are these magic tools? So let’s talk about vaginal dilators.

Vaginal dilators are smooth tube shaped devices and they come in a set of graduated sizes, so small, medium, large essentially, that are used to gently, gradually stretch that vaginal tissue so that it stays open and supple and comfortable. And dilators are the main tool that are used to prevent and treat narrowing and shortening after surgery for cystectomy. Here’s generally how they’re used.

Start small. Yes, I’m talking about size in a sex talk, I know. But start small and you want to begin with the smallest size that goes comfortably into the vagina. Using a lubricant on the dilator to make insertion easier and painless, this should not be painful. Inserting it gently, holding it in place in the vagina for a few minutes, and a lot of programs suggest 5 to 10 minutes, focusing on breathing and relaxing those pelvic muscles, and then going slowly with movement.

Some recommendations include adding a gentle side to side movement or in and out movement to help stretch the tissue gently and being consistent. So essentially this is physical therapy for the vagina, so you have to be consistent and do your homework. Using the dilator a few times a week is more helpful than occasional use.

And lastly, moving up a size only when the current one feels comfortable. So you don’t want to force it because this can take time for the body to get used to.

Rick Bangs:

Okay. So you’ve kind of hinted at this, but let’s go into a little more detail. What treatments are there available for the men who have sexual dysfunction?

Mary Dunn:

Yes. I’d like to cover some broad tips that apply to both men and women, and I promise I’ll go back to the finer details because I’d like to reiterate that sexual health is so much more than just the intercourse part. So for example, the body image. So for ileal conduits, emptying the bag, making sure there’s a good seal, wearing a cover or a shirt for folks if that’s what makes them most comfortable.

For folks with neobladders, they can catheterize first before a sexual encounter if there’s concern for leakage and men can wear condoms.

We need to make sure we’re managing side effects. So the fatigue and nausea and pain and neuropathy I talked about, we really have to do a good job with those things. And those urinary symptoms after cystoscopy and intravesical therapy, these are the ones I hear most about.

And then hugely important, the emotional distress that can come along with this. That’s real and it’s valid and getting people into whether it’s individual counseling, couples counseling, facilitating partner communication is also hugely important.

So with those things in mind, let me go back and actually answer your original question and talk about treatments for male sexual dysfunction, and this is going to really focus on erectile dysfunction for the time being.

Oftentimes, treatments usually start with the simplest option and step up if we need to, but of course, many, many factors play into that decision-making process. So the first are, and this in no particular order, but just how my brain works, are pills. So examples of these medications are sildenafil, tadalafil, vardenafil, and I should say I have no connection with any of these medications or companies. And how these work is they improve blood flow to the penis, and they are usually the first choice ’cause it’s easy. It’s easy to take a pill. They can be taken as needed before sex or on a low daily dose.

It’s important to note that these are not magic pills. So you can’t just take a pill and get an erection. That’s not how this works. I wish I had a magic pill. But they do require stimulation in order for them to work, and whether that’s self-stimulation or with a partner. And people should know common side effects of these things include headache, stuffiness, facial flushing, because it opens up blood vessels, dilates blood vessels. So that’s part of the side effect profile.

And then I mentioned earlier a vacuum erection device or a penis pump. And these are plastic tubes that’s placed over the penis that’s either hand pumped or battery pumped, and it draws blood into the penis to create an erection. And then folks can put a soft ring at the base of the penis, so the part close to the body that holds the erection. And I tell folks to wear that no more than 30 minutes.

I like this as an option ’cause it can work well. It doesn’t involve another pill that folks have to take and can be used regularly for penile rehab we talked about, but also before a sexual encounter, pretty safe and reusable. Some men find it takes practice to get comfortable with it and not find it as cumbersome. And one thing I always advise is to try an inexpensive version to test it out to see if you like it before committing to one that might be more expensive.

Then another option that always gets a real funny look in my clinic are penile injections. And I appreciate that that sounds horrific. I do, but bear with me here for a second. So these are shots that go into the penis, so the side of the penis, and these are very small needles. And it’s used to inject medication which can produce an erection within minutes. And unlike the pills, they don’t require stimulation in order to work, and they don’t have those kind of systemic all over potential side effects because it’s a local therapy. It’s not something you’re swallowing.

And this is a pretty strong, reliable option, and there’s dose and volume adjustments, and a nurse will teach folks how to do it safely, so how to pull up the medication, how to inject. And then sometimes really folks just have to get over the mental hurdle of injecting something into the penis. I get it. I get a lot of funny looks. But one other little trick for that is that sometimes what my patients will do is involve their partner, and I can guarantee you there’s a lot of partners out there who are jumping at the chance to give a shot to the penis. So it can really spice things up, change the foreplay, right?

Rick Bangs:

And these are magic injections.

Mary Dunn:

And yes.

Rick Bangs:

By your definition, these are magic.

Mary Dunn:

Magic. No, I should say they don’t work for everyone. And there’s a lot of trial and error, but oftentimes we see more success with these than with other medications.

Then the last thing I’ll mention for men is what’s called an Inflatable Penile Prosthesis or IPP, which is essentially a surgical penile implant. It’s a device placed inside the penis and a small pump is hidden in the scrotum, and that’s how you inflate it and deflate it. This is usually considered when other treatments just haven’t worked well. We don’t typically jump right into doing a surgery.

Rick Bangs:

Yeah, you don’t start with this one.

Mary Dunn:

Typically not. Typically not. But it has really high patient and partner satisfaction rates, and it can be done for men who’ve had pelvic surgery. As with any surgery, there are risks that come with that.

But going back to setting realistic expectations, a lot of men need to try more than one option, and some treatments work well if they’re combined. So for example, pill plus pump. And starting treatment sooner rather than later might improve results, but also it’s really unlikely to miss a window of opportunity to help with treatment.

Rick Bangs:

Okay. So when is sooner?

Mary Dunn:

Like post-op day one. No, I’m just kidding.

Rick Bangs:

I’ve heard people talk about doing penile rehab before surgery. So at what point does one think about asking or does the doctor think about recommending one of these options?

Mary Dunn:

Yeah. And obviously these are broad statements I’m making, all very individualized. Talking about this pre-treatment and whether that is non-muscle invasive bladder cancer, muscle invasive, more advanced disease, et cetera, I think is really important because it gives us an idea of where people are at baseline and also how much they’re prioritizing. So frankly, if we’re talking to a man and he’s already tried three different pills prior to treatment and none of them have worked, well, why would we go back to that after treatment, right?

Rick Bangs:

Right.

Mary Dunn:

So knowing where people are baseline, in my humble opinion, it’s never too early to start talking about this. For folks who’ve had cystectomies, to go back to the cystectomy stuff, I usually tell folks wait at least four to six weeks before we start thinking about trying to get an erection just ’cause there’s a lot of healing that’s going on. And not a whole lot of people feel up to that after cystectomy anyway, but these are conversations that can be had at any point in time and just deciding on what treatment is very, very individualized. But I say the more talking, the better.

Rick Bangs:

Right, right.

Okay. So now we’re going to circle back and talk about treatments for women.

Mary Dunn:

Yay, ladies. All right. So there’s a few different categories here for lack of a better way of putting it. So vaginal dryness, goodness gracious. So what can help with this? Moisturizers, use of moisturizers.

Moisturizers are designed to provide long-term hydration and restore elasticity to the vaginal tissues and should be used continuously for best results. So this is like adding it to your daily routine. And how they work is they adhere to the vaginal wall and promote water absorption. And some examples of these are Replens, Bonafide and Vulva Balm. Again, I have no connection to any of these products, but also coconut oil can also be an effective treatment for vaginal dryness, which I find absolutely fascinating. Some people don’t like it. What I’ve also learned from my patients is that a little bit of olive oil can help. It’s certainly not harmful, but it might not be helpful.

And then vaginal shortening, which we touched on this earlier, so I won’t dive back into it, but it’s really the vaginal dilators that I harped on that can help the most. Decreased arousal, and this happens because there can be nerve damage. And sometimes stimulation with things like vibrators can help. And there’s lots of options both online and in stores that sell these particular products. And I only know that because of what my patients tell me.

And then painful intercourse. So again, back to vaginal dilators, I tend to harp on things that I know really help people.

Rick Bangs:

Right. You should.

Mary Dunn:

I should, right? But also changing positions. So this can also spice things up trying something new, but can also help with pain. And an exam by a pelvic floor physical therapist to see if they can offer other pelvic strengthening solutions. So those are some things for our female patients that I recommend.

Rick Bangs:

Okay.

Now, are there some issues we haven’t discussed yet, but we really need to?

Mary Dunn:

Oh, Rick. Well, a few things come to mind. Number one, partners. So if a patient is partnered and their partner is present, asking if it’s okay to discuss these things. And the reason why I think this is important is because some couples have very, very private sex lives, which of course is fine. And some people are more than willing to talk as openly as humanly possible about this aspect of their partnership. But including partners in the conversation is important because this directly impacts them as well. And I’ve found over the years that the more that partners talk to each other about changes in sexual health, the more open they are to different treatment options and the more they’re able to explore different kinds of intimacy with one another.

And then another thing I think it’s important to touch on is hormone replacement. So big kind of caveat here, this is not for everyone, but for some people it is appropriate. So for men, men can have their testosterone levels checked if their provider thinks it’s appropriate to ensure that low testosterone is not contributing to sexual dysfunction. This is very nuanced. There are specific time of day that this needs to be drawn, and this really needs to be done under the supervision of someone who’s trained in managing low testosterone and ensures proper dosing and follow-up.

And for women, we think about estrogen replacement therapy. So in particular, I’m thinking about vaginal estrogen, which is safe and very effective and can help with painful intercourse, vaginal dryness, and for women who have non-muscle invasive bladder cancer can help with recurrent urinary tract infections if that’s a problem for them.

And the last thing I want to touch on in this, Rick, is that I want to specifically mention intimacy ’cause we talked about the sexual part, but the intimacy part and what that is. So there’s different types of intimacy. So there’s emotional intimacy, which is things like sharing secrets and hopes and deep personal feelings. And there’s physical intimacy, which can be non-sexual affection that builds comfort between people. Intellectual intimacy, which is the exchanging of ideas and exploring new concepts together. And then other types of intimacy like doing activities and sharing life and life events together. So just want to make sure I touched on that as well.

So appreciate that opportunity.

Rick Bangs:

Yeah, important. Very important.

Okay. You touched on this a little bit before, but anything you want to add around who patients should seek out to have this kind of discussion and get the professional guidance on sex after bladder cancer?

Mary Dunn:

Yeah. So like I mentioned, anyone on the care team, and if the primary team doesn’t have the expertise or it’s gone beyond their level of expertise, asking for referrals to different subspecialists such as gynecologists, ostomy nurses, if there’s pouching issues that are leading to some sexual issues, physical therapists, sexual medicine, mental health providers, and also equally as important, peers and support groups. I think that is a huge, huge thing here because sometimes, believe it or not, it might be easier to talk to people who have gone through a similar thing even when it relates to sexual health and intimacy. So I’m a big fan of support groups for this too.

Rick Bangs:

Sure.

Any resources that you would particularly recommend?

Mary Dunn:

BCAN will soon, once I get my act together, have some updated … I totally own this.

Rick Bangs:

You’ve committed now, Mary.

Mary Dunn:

Soon, soon, have some updated information about sexual health on their webpage under the survivorship section.

Rick Bangs:

Excellent.

Mary Dunn:

So be on the lookout for that. I’ve now put myself on the timer here. It’s okay. I own it. And other organizations like Livestrong, the American Cancer Society, the Urology Care Foundation, which is part of the AUA, the National Cancer Institute, all have patient-friendly resources as well. There is a site I want to call out called the Vagina Rehab Doctor. I would definitely check that one out. It’s really cool. It has a lot of good information on there.

Rick Bangs:

Okay, excellent.

Any final thoughts?

Mary Dunn:

I always have final thoughts. You know that, Rick. This is my third time, right?

I think it’s really important to note that this discussion applies to all patients regardless of cancer stage. So whether it’s non-muscle invasive bladder cancer, muscle invasive, advanced disease, folks who are actively getting treatment, folks who are done with treatment and are on surveillance, et cetera, age, sexual orientation, sexual preferences, partnership status, and that we, healthcare providers, don’t always get this right. We might come with our own set of biases. We may not have enough time to discuss this or adequate training. We may not know what to say, and we might even jump to our own conclusions. And these aren’t excuses. They’re just certain realities.

And that’s why I like to think of the relationship between patient and providers of partnership. It’s really a two-way street of communication and discussing topics that are important, learning from each other, and perhaps stepping outside of our comfort zones.

We also have to meet people where they are. Some people want to jump right into talking about sexual health at their post-op cystectomy visit, for example, or literally during their cystoscopy. It happens. It happens. And for other people, that’s the farthest thing from their mind. So just meeting people where they are.

Also, we don’t have a reliable way to know who is going to experience what side effect and for how long, and also what treatment for sexual health is going to work for what person, to what extent, for how long, et cetera. There’s a lot of trial and error, and with that comes trust and open communication.

And lastly, it’s normal and healthy to want to talk about sexual health and intimacy, and it’s normal to grieve how things have changed, if they change, during or after treatment for bladder cancer. I truly hope that everyone listening is able to give themselves some grace wherever they are in this process. This is very complicated and you are not alone.

Rick Bangs:

Absolutely not. Absolutely not. This has been great. So Mary, I want to thank you for helping us understand the impact of bladder cancer on sex for men and women.

Mary Dunn:

You’re very welcome. Thanks for having me.

Rick Bangs:

Oh, our pleasure. If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. If you want additional information on this podcast, you can send an email to [email protected]. Just a reminder, if you’d like more information about bladder cancer, you can also contact the Bladder Cancer Advocacy Network at 1-888-901-2226.

That’s all the time we have today. Be sure to like, comment and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters.

Thanks again, Mary.

Mary Dunn:

My pleasure, Rick. 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, advance 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.