Transcript of Sexual Health Strategies and Bladder Cancer

April 12, 2023

Stephanie Chisolm, BCAN Director of Education and Advocacy:

Okay, happy day two of the Spring Summit. For those of you who never knew what I did before I came on board at BCAN, I used to be a college professor. I used to teach everybody’s favorite elective. You know what that was? I taught sex class. And just like I remembered yesterday to play Amy Winehouse, Rehab, I just remembered, darn it, I should have had him play Salt and Pepper, “Let’s Talk About Sex…”. Because this is something that people don’t think about, they don’t talk about. It’s in the fine print on the consent form and some doctors will mention it, but you’re so busy being distressed by a cancer diagnosis that you don’t hear that. And then afterwards it’s like, “Okay, you saved my life, but you took away some of the good parts. Why?” And, that’s a problem and I think that it’s something that we want to be able to recognize more. I think we want to be able to pay attention more to it. There are some solutions and quite frankly, as we all get older, it’s a sunset, not fireworks anymore. And life is different as you get older, but you can still be who you were before.

And I’m really delighted today we have a very different focus on this. We’re going to be talking about sexuality after bladder cancer and we have a wonderful medical oncology perspective coming in with Dr. Alejandro Recio-Boiles who came up from Tucson. He’s down there at Banner Health in the University of Arizona. And we are going to have a really cool perspective, and unfortunately Dr. Svetlana Avulova, who is one of our young investigators, was not able to make it. I know enough to be able to start the conversation and I’ve asked Dr. Linehan to be available for Q and A at the end. So let me just advance.

I’m going to start. For those of you who have had or are facing a radical cystectomy, let me just give you a quick background. So if you guys can play that video for me. Oh, I have to click next. Okay, perfect.

Animation – Radical Cystectomy:

Cystectomy is a surgery that involves the removal of the bladder. The most common type of cystectomy is known as a radical cystectomy where the bladder and nearby tissues and or organs are removed. After the bladder is removed, the surgeon also needs to create a new way for urine to be stored and leave the body. This is known as a urinary diversion. A common type of urinary diversion is called an ileal conduit. This is when the surgeon creates a new tube from a piece of intestine that allows urine to pass through and out of the body via a small surgically created opening on the stomach known as a stoma. The urine then drains into a small pouch that fits over the stoma and attaches to the skin with an adhesive. Another common type of urinary diversion is called a neobladder. This is when a new bladder is made usually constructed out of a piece of intestine and attached to the urethra. In some cases, a continuous cutaneous pouch, CCP or Indiana pouch is created using the small and large intestines to create an internal system of urinary storage. This pouch or reservoir is connected to the skin by a stoma, a small surgically created opening on the stomach and is periodically drained via a thin tube or catheter.

Learn more at bcan.org.

Stephanie Chisolm:

So you saw during that video, that little piece where they showed you the male and female anatomy with the little circled area around the bladder, when they removed the bladder, even doctors that are very, very careful and very aware, somehow can cause some trauma and damage to nerves that are there that control erections and lubrication and things like that for sexual function. And very often if they’re careful, they can recover to some extent. For women when they remove the bladder, depending on where the tumor is located, sometimes they end up with changes in their vagina, a shorter vagina. These are things that can be remedied or worked through afterwards and we’ll save those questions for Dr. Linehan at the end. But it is a very big impact on sexual function and something that people really do need to be aware of. But Dr. Alejandro Recio-Boiles, I always just put it all together because it rolls better that way, has a really nice presentation and we’re going to get started with that and then we’ll open it up to questions and answers. Remember that we want to use the so that we have everybody able to hear.

Dr. Recio-Boiles:

Okay. And thank you for inviting me and thank you all for being here. I do really appreciate. As you may see right now, you’re looking at someone who is perhaps considering himself very young in this cancer world. So I’m going to call me a non-expert. So I’m going to try to give you a sense, and I wonder if you already had kind of a medical oncologist because I know that sexual function comes really front of surgeons questions. But, I have the experience now for about six years between fellowship and being an assistant professor. Well seven now, that bladder cancer patients spend a lot more time in my clinic than they spend in the urologist clinic or in the OR, so I get to know them more. So I do have that feeling, but I’m not an expert. So I’m going to give you kind of this sexual function from a non-expert medical oncologist perspective.

And I’m going to say the first thing that I’m going to tell you, perhaps even in this room, not all the patients are in the same place. As you can see, you will see in this graph taken from frontiersin.org that you have four different types of places that I as a medical oncologist can help, but you know that you may be coming from that perspective. You may be in the non-muscle invasive. A urologist will be helping you with the non-muscle invasive bladder cancer and he may be giving intra-bladder treatment. But when that fails, we medical oncologists are called upon if you want to preserve their bladder to give approved treatment that is Keytruda or Pembrolizumab or the non-muscle invasive that is refectory and resistant, and then I have to spend one year or more giving immunotherapy. So I get to meet you every three weeks or every six weeks talking to you about what your quality of life is. Or you may be already in the muscle invasive in the upper left side and the medical urologist sending you to me. And he is like, “Well, definitely neoadjuvant may bring some benefit. Why don’t you discuss with him?

Stephanie Chisolm:

Can you explain neoadjuvant?

Dr. Recio-Boiles:

Oh, sorry. Thanks a lot. The treatment that you need before the surgery to make it one, a more successful surgery and two, to make it a more successful outcome in the years to come. So you may need that treatment before, and that treatment is no immunotherapy but now chemotherapy and there is a fear of cancer. Why you have not taken it out? How much we going to spend time here? What chemotherapies are you going to give me? And then we going to spend about three to six cycles talking about every cycle, three to four weeks. So we are going to spend a lot of time, months before you go to surgery. So you will spend time in my clinic knowing me and talking about your quality of life. So you may have a different perspective now about what your future may be.

Then I’m going to talk about that bladder cancer that is perhaps not able to be resected or perhaps that it came back. And then we are talking about, well, if surgery is not an option, if the cancer is spread out as metastatic as we call it, you will be with me for treatments and we’ll be discussing the two most important treatment about chemotherapy again or immunotherapy. And then you will continue to be with me in different roles. And sometimes when we have completed, and I forgot the adjuvant, I’m sorry, treatment after having this bladder removal, nowadays, there is approved immunotherapy that can help to reduce the chance of cancer coming back. And you’re going to spend in one year with me and perhaps in the non-muscle invasive, in the muscle invasive before and after the surgery, perhaps in a great situation of advance that we can completely put everything in remission and no disease. Well, I take sometimes the lead and I surely do more in my cancer center of the surveillance. So you will spend five years of your life seeing me.

Stephanie Chisolm:

So you better your like your medical oncologist and your urologist because you will have a relationship with that person forever, basically.

Dr. Recio-Boiles:

What I’m trying to say is we have time to talk, we have time to know each other and we need that every visit. Doesn’t have to be every cancer, diagnosis, treatment side effects, every visit should be a little bit of my goals, my quality, my needs, my whatever you want to talk about. We have to spend some different times. Let’s keep moving.

Sexual functioning, just to find a perfect definition is hard. It is complex. It is the absence and difficulty of moving to these important three steps, the desire, the arousal, the orgasm, and that is objective to your satisfaction and your partner’s satisfaction. The frequency that you both as a couple want to, and the outcome of that event, and perhaps not even everything has to be the intercourse or the actual. So we also have to say that sexual function is part of the quality of life.

And I spend a great amount of time with Dr. Richard Garla in New York and he had a lot of PROs, patient reported outcomes and he wanted to enumerate what was the most important situation for patients. Specifically we were doing with lung, breasts and prostate because are the most frequent. We didn’t do bladder, but the usual it is I want to be independent, top of the list. That’s what I want. I want to be independent woman or man, I want to feel independent. We always doctor think that it’s, “Oh, he wants or she wants to be without pain,” No, she wants to be independent. That’s one of the main things. And I want to have pain free or pain control. But sexual function always kind of came a little bit down and it’s part of that. It always came. I don’t remember the number, I will have to go back and look at, but it always from one to 10, it was always in there, but it was there was that. When you ask patient blindly without the doctor, without the nurse, when you ask them, “Hey, do this online, do this as an e-tablet that we were doing e-tablets before seeing the doctor, and write about it was part of the quality of life.

We also, our understanding of sexual function may vary from communities, religions, cultural. It is complex to just say that we all have the same shared values, but let’s say that a healthy social function is that we can go to these three steps and we can move easily without a major psychological or major functional or major distressful situation or painful situation in cases. But again, I’m going to say that everyone that is in this room may be thinking something different about sexual functions. So I may be thinking about, well, I don’t feel, don’t have the libido. I may not have this self-awareness of my new body changes, how that is going to work. Or I may be in a crisis and I call it an adjustment to the diagnosis and adjustment to the cancer, or is maybe lack of communication with the partner because they don’t want to feel harm or get harm or harm the other. I’m not going to pretend that we all have the same problem and we all in the same place. Therefore, every patient needs to express their needs, their uniqueness.

So let’s talk about the problem. And that’s the problem that, we don’t talk it. Doctors don’t know how to ask. We are really good at asking, have you had diarrhea? Have you had fevers? That’s a no brainer line. You can ask that and we can say how many times, how was high? But we don’t talk about it and our patients do not mention it perhaps because they don’t have the sense that it’s important. It is not an important topic in the room. So we really need to figure out a way that we have that conversation. Most conversations running nowadays, and this has been in some quality of life questionnaires that we barely talk about it. And when we talk about it, we talk about it superficially, just a question and answer and we don’t follow up and we don’t give a guidance and we kind of dismiss it.

Okay, that’s from a medical oncologist coming, and perhaps the patient, like let’s focus more on the family, what we need this too. no one really gives them an important time, but we have to raise that concern because again, if we are not in the same place, we cannot just assume the doctor will know exactly what is your problem. If you say, “Well I want to know about if I can have sex,” then the doctor will be, “Well, what is she or he talking about? Is he talking about he doesn’t have the libido or the arousal, he doesn’t have the rush or is she or he having difficulties or missing erection or having painful penetration? I don’t know what she talking or he’s talking about.” So let’s be more specific so we can guide that conversation to your need, not everyone’s need.

So really a good history of what was before that’s important. And can we examine what may be important for women with their obstetric examination? And can we talk about the problem? Is it a single problem or a multiple intervention that you may need multiple problems. But really we have to be clear, and this is what I call, what is the patient expectation? What is the doctor’s expectations, as well? And try to come into the middle, because if, now I’m thinking as a medical oncologist. If you tell me like, “Well I want to have a great sex life, but before having bladder cancer, I didn’t have it.” Then we have to talk about it. But if you tell me, “No, no, I was really, really active and that was really important for my couple and me, for my partner and me, I want to preserve that.” Then that becomes a real important topic for that doctor.

So we can find simple solutions like non-interventional, non-pharmacological solutions. And I’m just going to mention it. It is not this topic to say one by one what when we can do, but if you have a vaginal dryness or difficult penetration, the lubricant may help. Does one of these new condoms hyper-lubricated helps or do you need moisturizing constantly to keep it. And I know this falls a little bit more into the urologist and perhaps women’s Gyn-Onc, gynecologist, but we can talk about it as a medical oncologist, I say, “I feel comfortable, let’s talk about it.” Do we have to do lifestyles changes? I’m super open, I don’t call it alternative with complementary medicine, let’s do something outside box that I don’t know, but you may get benefit as long as we have a good understanding of what you’re doing and what I am following so we can have it. Or sometimes we need someone to help us. We need that sex therapist or couples counselor because perhaps let’s say the man is telling me, “Well, I don’t have problems with my erection,” and the woman is saying, “Well, I don’t have problem with the penetration. We just don’t find the time or we don’t know what, we are fearful.” Perhaps you need a conversation with someone who can help you break those barriers up and give you some guidance.

Stephanie Chisolm:

I added a slide at the very end on how to find an ASECT certified sex therapist near you and I’ll talk about that at the end. So this is a good point.

Dr. Recio-Boiles:

Yeah, it is really important. If it doesn’t fall into something symptomatically and you recognize that, well everything is working, I ask patients, everything is working and you do have the arousal and what is the situation? “Well, is the fearfulness or the anxiety or the act,” well then we need a sex therapist because I’m not. But we are going to keep talking about it.

Also, we have to talk about managing the problems and patient and family member may have what I call it, a behavioral mental health problem. And it could be depression, it could be anxiety into panic attacks, it could be something that affects the patient from performing that is interrupting their quality of life and that needs to be addressed and that’s where we, I’m thankful that I am in the University of Arizona, I would like to say the comprehensive cancer center that I immediately can say, “Hey, I’m detecting this signs of depression, signs of anxiety. I need help. It’s interrupting the patient in their quality of life in their decision making. I really need help.” We have a dedicated behavioral health team to help us, and this can be taken care into account. Sometimes when we are in the later stage of the cancer, that person becomes the trained palliative care because I know my palliative care team does ask about sexual function because if that is important for you in the late stages of cancer, that is important for your quality of life and they do address it.

Stephanie Chisolm:

So that’s not the first time in these two days we’ve heard about palliative care and behavioral medicine. We talked about that yesterday with Dr. Kapoor from the Mayo Clinic and with the rehab session. We were talking about palliative care. So these are all good points. Are you getting some themes here? There’s a lot of resources out there.

Dr. Recio-Boiles:

Yes, definitely. Definitely. I mean I would say I’m a team player. I cannot really do things. I see my team and more than just my doctor nurses and infusion suite, it is my urologist, my radiation doctor, my palliative care team, my Patty Anderson who is my wound and stoma care person. Everyone, I want them all to be involved and I want them all to be communicating because I am not able to achieve your quality of life that you deserve only in one single visit every three weeks. So we need a lot of support from other ones. So we sometimes needs to talk about physical therapies if that was mentioned before because even physical therapy, not only for you to regain strength and walk and perform, and there is physical therapy for pelvic exercises that are important for the action of sexual intercourse, not only for continence, not only for other stuff, but there is therapy for that, there is exercise for that.

Pharmacological intervention. Sometimes we have to add hormones or sometimes we have to add the medication for behavioral health or the depression or the anxiety medications to help. Sometimes it is the Viagra, sometimes it’s the Melanocortin. We are testing different things, and sometimes we can detect that, “Oh, may be a side effects of an already existing medication that we may need to safely take it out.” Especially for those who are taking, I don’t know, beta blockers or an SSRI, which means I would call it a behavioral medication that is causing you to lose your libido. So sometimes we have to safely talk and stop a medication to help you going.

There are a specific interventions that mainly urologists help and a medical oncologist like, well if it’s the penile intercourse it’s really difficulty you may have to delay to open up or if the penis is not helping, we may need to put an implant or we need to check on the hormones or we need to check on your metabolic profile, perhaps it’s your cardiac function, your breathing function was intervening in you not to have your full outcome.

But let’s keep talking about it. And as you can see, cancer treatment has become very complex and when we all see that, now I believe that this is taken from another kind of picture. I forgot to put it there, but it is kind of really complex. It’s not only hormonal, surgery, transplants when it is indicated, of course not right now here, but chemotherapies, target therapies, radiation therapies, immunotherapies, and we are getting now gene editing therapy. There is so many things, but what we know is that all of them somewhat, they will impact your sexual function and, my apologies I didn’t put it as a reference, but by a quality of survey that they did, they found that at least 92%, they never ask neither the doctor or the patient, they not ask, they just keep moving. But when you ask them to the patient they say 50% of the time they felt impacted. They really felt that something really changed. But 86 consider it really, really important. So this is really important to address in such forums like this.

I’m going to mention that’s kind of the uniqueness, the twist that I can give you right now. It is about when a patient is on active chemotherapy, things that I’m associating. Chemotherapy can be associated with the two major problems that a woman may have. Dyspareunia, which means a painful intercourse, or erectile dysfunction, which means that impotent that we cannot have an erection. And these both are mostly related for mucosal injury because the mucosa as you have diarrhea, that’s rectal mucosa as you have mild sourced, that is mild mucosa. The mucosa is a fine layer that chemotherapy will immediately affect, and you do have vaginal mucosa and you do have penile, through urethra mucosa that may be affected. So there is a lot of affection.

The next one, it is that chemotherapy causes, if a woman have not gone through, but it causes a really abrupt, really rapid menopause because it will start shutting down the ovaries or it can cause andropause, it can start causing the men. As you can read here, or it will come in a second one, about 86, or I remember, 80% of the men will have a low testosterone. So it can happen really, even without noticing. So maybe checking the hormones. It’s an important part of the investigation.

The next one is we do all depend on nerves, and bladder cancer are using a lot of treatments, chemotherapy like cisplatin and gemcitabine and others that you may see that cause direct nerve injury, neuropathy and that is not only important for your fingertips and soles and palms and you feel a bit numb or you feel a bit painful. It is important for the conduction of the stimulation through the nerves of the erectile function or everything that you need in your pelvic area. So we also have to address pain and fatigue. Pain and fatigue are what we believe, medical oncologists, are the main causes of the lack of engagement, lack of sexual activity when you are in active chemotherapy. You know you really feel tired, you really, chemotherapy and you are preserving that energy and sometimes it’s debilitating, and sometimes it can be lingering after you complete this treatment.

And well, then we come with all this psychological distress. Most patients will go from a radical cystectomy when they have the opportunity to try to cure the cancer and then that changed your body image and what do I do with this and how I’m supposed to function with this in my daily? I get questions like I’m guitarist, I played guitar and how I’m supposed to do it with my guitar here? Or well love to go to my pool. How I’m supposed to do it? And now imagine I’m in my bedroom with my partner, how I’m supposed to do it? It does change the body imaging. It is expected. I tell all my patients, “I’m not saying that you all have depression but I’m expecting you all to go through an adjustment disorder. That’s a term, you go through an adjustment of a new stressful live event that is going to change your mood.”

And relationship factors. Let me just say this. Partners become caretakers and I tell them, “I understand that you become the person who wants to care, but more than that the patient wants to still feel that they can have a relationship, they can still work as a relationship.” And also the caretaker can have this enormous stress of trying to help and not trying to harm and trying to prevent and trying to be there all the time that they forget to be partners, they forget to be husband and wife, or partners or couples. So there is a lot going through. An active immunotherapist.

As I mentioned, I can perhaps influence these bladder cancer course in non-muscle invasive immunotherapy in the, it’s going to move soon enough, it’s going to move to before the surgery immunotherapy. Now approved, after the immunotherapy. I know that we use it when it is advanced or metastatic, we can use immunotherapy.

So we all know a little about immunotherapy because we have been investigating this but it’s not approved since a few years ago. So what we know it is that we don’t have that much evidence. Chemotherapy has been in the market for 40 years, 50 years. But with immunotherapy we know that, now I’m going to use a term hypogonadism which mean that your ovaries or your testicle went dormant, because it got inflamed. Immunotherapy is you are given an infusion to activate your immune system. It’s not going to the cancer, perhaps it’s blocking a little bit of it, but it’s activating your immune system.

So immune system is a little bit of hyperactive and they can find that inflaming something else maybe come along, like when you have diarrhea, that’s the colon, you have colitis. But when we think about it, about can it inflame the testicles, can it inflame the ovaries? They have tried to find and it is extremely rare. And when we call about rare event, we are actually talking about less than one in a hundred. I do not know the numbers, but it is extremely rare. Then it is has been linked without a major inflammation of the testicles to reduce the testosterone. In this case, about 60% it has been already linked and I’m sure that it has been linked with, I couldn’t find it, with a low hormone woman’s hormone as well, may be linked, although at this stage maybe in menopause. So it’s something that is of interest.

Now when we talk about secondary like, well it is not the ovaries, it’s not the testicles which are inflamed, but it is something else like the signal in the brain where it’s the hypothesis which is kind of endocrine organ or a hormonal organ who sends the signals downstairs saying, “Hey, thyroid, wake up and do something. Hey overdo wake up and do something. Hey testicle, do something.” Well that can get inflamed. That is also perhaps rare event, because I consider rare less than 1%, or five. When you’re doing one immunotherapy, it is 1% more or less. When you’re doing with the combination of immunotherapy, it goes to 5% to 10%. We are trying to figure it out, but it’s something that we can early detect and that can affect the sex hormones and the thyroid hormones, which is important for the energy and metabolism.

Now we are going to talk about, not the testicles or the ovaries, but we are going to talk about the sex organs. It’s really, really, rare, but they have described cases of for the woman to have inflammation of their vulva. So that’s called vulvitis or an inflammation of the penis. You can have extremely rare events. There have been case reports. So immunotherapy overall I consider very safe. If you ask me, I always quote, “The chance of having a side effects is between one to patients out of 10. That is a considerable side effect. But immunotherapy, we keep forgetting that most patients are in this process and they’re fatigued. That’s 70%, that’s seven out of 10 patients. So patients feel fatigued and most common side effects are skin changes. And we do have a skin and mucosa that will be affected in the sexual function, and that is pretty frequent. We get dryness, we get itchiness, we get those things. Let me know if we are still on time. I don’t know.

Stephanie Chisolm:

Yeah, we’re still doing well. We’re going to go to question and answer in about 10 minutes. We should be good to go.

Dr. Recio-Boiles:

… And there is the lack of clinical data.

Stephanie Chisolm:

I just want to comment on one thing. Immunotherapy is still a relatively new type of treatment. So when we’re talking about rare cases of individuals who have had a sexual impact from immunotherapy, it takes a long time to really understand if you only have an occasional case, meaning an individual who has a negative side effect that functions in sexuality that is written about in a journal for there to see enough of that to actually see a pattern and come up with a solution. So the information that you’re getting is that this is a rare consequence, but it is something that should be paid attention to. If you have concerns or problems and you’re on some of these therapies, make sure you let your doctors know about it.

Dr. Recio-Boiles:

It usually starts with a rare event that is so evident that the patient ends up in a consult or in a hospital admission that the doctor feels kind of intrigued and publish it. And then there is another one. And then we have a doctor who see another one that has now has a case report, it has a few events, it has a case series. And then we started saying, “Are we missing this? Should we be asking this? Should we be looking at this?” Because we have been looking at the TSH or thyroid hormone or the diarrhea frequency, but should we be looking at this? So case events when they start piling up and making case series and making more evident that we need to be addressing this.

So now we got to move to the cancer survivor. The person who already went to the treatment, survived cancer perhaps in the surveillance, perhaps already after the five years. Well they still are struggling with this complex situation that it is well described that we need to address. And I keep mentioning it, it can be the lack of communication between the doctors and patient or the couples. It could be the body integrity that you don’t feel comfortable. It could be anything of these cultural values. I mean, I’m a Hispanic, patients become the patients forever. They don’t stop being the patient with, “Oh, he’s 10 years survivor. But you see he’s doing this strong.” We’ll let him be strong. That’s my culture. So I know that they become the patient forever. It’s like never a thing that is going to change.

So female cancer survivor. So the majority of female cancer survivor will be stilled distressed even after because of the sexual function. As we said, the most likely problem is the dyspareunia, but we’ll really lack a specific, we really need to understand and dyspareunia, it is the painful act of intercourse with the vagina. And we also have to talk to them or help them in these long term changes of their sexual function that you mentioned at the beginning. It’s kind of in the fine lines, but they don’t, now that I’m out, how we going to improve this?

And this is the best thing that I think most doctors should be doing with their support team. I know doctors are busy, I’m busy, but it’s not that I’m going to go there, but if you can give this and that I’ll learn. If you can give PRO, patient reported outcomes to quality of life, a screening, simple. You don’t want a patient spend an hour answering 60 questions, but perhaps, five questions. And if you detect the problem at screening like, “Oh, she’s having problem, she needs help,” then you can start elaborating. So perhaps that’s a home take message and I’m sure a value for all medical oncologist and neurologists. Start giving a screening. It doesn’t have to be in every visit. It can be this time, it’s going to be about a mental health. This time it’s going to be about sexual health. This time it’s going to be… Just putting your clinic layers of communication because then you can go through more deeper kind of questioners, which are more in detail.

And a male cancer survivor. We know more about male because males is always about the prostate. Say, how do we go back a little bit. Yep.

Dr. Recio-Boiles:

You’re welcome. Is that okay? You’re welcome. So male, we know more because male has been studied for sexual function in radical proctectomy because prostate cancer, that movement in the removal of the prostate and that changes the anatomy, that changes the nerves and everything. So we have known a lot, but we have, not to assume that all male have the same physical issue, the erectile dysfunction. We immediately assume, do you need Viagra? We need to say male also have a complex interplay with multiple situation, but erectile dysfunction becomes at 60% most common complaint of bladder cancer and cystectomy. And erectile dysfunction can be not only the surgery, it can be the medications, the depression, the hormones. It can be the negative body image, the arousal. So even erectile dysfunction has a higher complexity than just needing one medication.

And many men, when they are surveyed after, most of them, they do not resume sex after radicals proctectomy. And they also have a screening male survivor. And I would say that the full questionnaire for male is more intensive. Perhaps we have to develop better tools for female. So in a cancer survivor, we know that sexual function, it is of great importance for quality of life. We know that we need to be screening and counseling about sexual dysfunction. And this may occur in every process. It can be the pretreatment when you’re starting to discuss importantly to start asking, “Hey, how’s your sex?” Before we get into this journey, just write it down here. We can know the baseline. That’s what a lot doctors love, no worries. How they change? How can I help?

But in every treatment, start talking about it perhaps reassessment with these patient recorded outcomes and even after treatment, let’s remove the discomfort of this topic and let’s give it time. It’s not only like, “Oh, we did your labs and blood work, or we did your imaging CAT scan, you don’t have cancer. Come back in six months, come back in three months.” Let’s talk about what is important in your quality of life today that I can help you.

So these are potential problems that I found. I think we, doctors lack adequate training. We go to medical school and talking about sexual function is not one of the top priorities in medical school. We have to give us some room, the provider and patient discomfort to really discuss sexual function in this social, cultural difference. Doctors and patient may be from different backgrounds. And they need to, as you know, we cannot just assume that it is sexual function, it’s only the sexual intercourse. It is a more complex situation.

We need to assume that cancer patient care about this because we immediately, and I’d this, doctors like me immediately start saying, “Well, it’s an older patient. Well, he’s ill. Well, he’s single. Well, we don’t know their real sexual desires. We need to know their interests.” Awareness of treatment options like sex therapies, couples therapies is not only one visit. The lack of responsibility, who really is going to, because I don’t think the urologist should be blamed because they did the survey or colleagues should take the lead because they see more. It is a shared responsibility among all. And we need to start addressing also really how we talk about men and female, male and female, men and women, but there is a whole topic of sexual minorities or different sexual partners that we have not even talked about.

So recommendations. I mean, this is our recommendation. I follow the ASCO, the American Society Clinical Oncology guidelines, and their guidelines have that. You need to screen, you need to report. It has to be an early and open conversation. It has to be important with the partner, the partner has to be involved. It has to be a multidisciplinary team. As I just mentioned. Not only one stop and we have to do early on. We really don’t want to come late and perhaps something that we cannot reverse or help. And these are some additional resources that I will let you…

Stephanie Chisolm:

So the American Association of Sexuality Educators and Counselors and Therapists are licensed social workers that are really trained in sexuality issues. And this is their website and they have a network of people all over the country. And I, Dr. Linehan, if you’d like to come up, I’d love to have you come up and join us? He’s going to help me with questions that we have. I want to remind you that now you’ve been all together for a whole day. So now you’re best friends. You have so much in common that I want you to feel comfortable asking questions because the question that’s burning in your mind right now is probably the question somebody across the room also has. So we’re going to open it up to questions from the group and the doctors will try to answer them. And I know that they’re very capable. And how many of you have a medical oncologist on your team that has an attitude and perspective like this? Ooh, don’t all raise your hands. Uh-oh. I think they all want to come to Tucson now to be your patient.

Dr. Recio-Boiles:

And I will say I think that I must not be alone because it’s not every visit, but so often I do be put to the test, the partner saying, “But can she or he have sex?” And I’m like, “Well, that’s important question. Thanks for bringing it up.” Or things like, “Do I have to wear a condom or can I have sex on treatment?” So I know I get the questions. So I know all the doctors may be getting the questions.

Stephanie Chisolm:

So raise your hand if you’ve had a doctor who’s brought it up first and has been open to you bringing up questions? Nobody’s had a doctor bring it up even if you didn’t have a question? Wow. One or two, just a few.

Participant:

I have question, and the doctor removed my bladder and he reduced my vagina by three inches. And then I said, “It seems to be closing up within six weeks.” And he goes, “Well, we’re older. That happens.” That’s unacceptable to me. I want to know which field of specialty I need to address. Do I need oncology? Do I need gynecology? Who do I need to be able to see? I saw that you have vaginal dilators. Who helps me with that? Where do I get these questions answered? My oncologist is a male, he’s speaking today, but we’ve never discussed these issues because I thought it was either GI or oncology. So I need to know which fields to address on this because I think it is important no matter what age you are. If you want to continually have a sexual partnership, you need to be able to have this addressed and helped with. This was one of the most important questions of the seminar that I wanted taken care of or answered.

Stephanie Chisolm:

Good question. So again, let me introduce Dr. Jennifer Linehan, who’s come in from California. She’s a native from here, right?

Dr. Linehan:

Yes.

Stephanie Chisolm:

So she’s very familiar with everything here and she’s volunteered. I asked her to be there to answer the questions.

Dr. Linehan:

Sure. So first of all, that was an excellent talk. Thank you for bringing that up and I’m very glad that’s part of your practice.

Dr. Recio-Boiles:

Thank you.

Dr. Linehan:

So I, let’s see. I’m an Arizona girl. I went to University of Arizona for college, med school, then did my residency, then I did my fellowship at City of Hope, which was in California and stayed there much to my mother’s lament. So I remember I was a third year resident. I had done a cystectomy who was a female patient and she came back to see me and the attending was there and she was doing very well from her surgery. And she chases the male attending out of the room and she’s like, she leans over, she’s like, “Can I still have sex? I’m having problems having sex?” And my eyes must have got really big because she sat back because that’s not a question I even had thought about until that patient brought it up.

So it is, you’re right, it is our responsibility to understand what’s important in the patient’s life and talk to them about those things and tell them things like, “Okay, we remove part of your vagina when we do the cystectomy, it’s going to get shorter. You can have contractions, your pelvic floor can fall down. And sometimes we have to fix that.” So those are all the risks that we should talk about. Now if they’re having sexual dysfunction, men or women, for women in my area, and I see women who have also had radiated vagina, which also can create problems. You need to see a really good pelvic floor therapist who can help you learn to do the dilations. Sometimes we have to give medicines like vaginal valium to help relax so that they can go through the exercises. There’s vaginal gabapentin. So there’s all these different things that we can offer to help open up the vagina again and make things more comfortable. And then, oh my God, there’s like 10 different lubricants that we can use. And some of that’s estrogen, too.

Dr. Linehan:

The pelvic floor therapy should be covered under Medicare, some of the lubrications and stuff like that, you can buy them online. But it’s a very important topic and you have to address all of those issues before you take out the bladder and do the surgery so that people know, so the patients know what to expect. And maybe some of that stuff doesn’t happen, but at least they’ll say, “Okay, the doctor said this could happen.”

Stephanie Chisolm:

Yeah, that’s where you go start with the AASECT and then talk to your physician. It’s this site right here, that American Association of Sexuality Educators, Counselors and Therapists, and they will know some of the doctors, but speak to your healthcare provider because there’s likely somebody within the practice, even people going to say, a large urology practice in their community, they often have one or two of their doctors who specialize in sexual medicine who can help out on that team and answer those questions.

Dr. Linehan:

Yeah, and my team knows who the sex therapists are that are accredited and legitimate. Because you’re right, if you look that up online, you’re going to get a whole array of stuff that you don’t want to see.

Stephanie Chisolm:

You can never get that off your computer, by the way.

Dr. Linehan:

So there are people that are accredited therapists, but it’s a combination of treatments. I mean, you need sometimes a sex therapist, you need the pelvic floor therapist, you need the doctor to be involved, too in sort of directing some of that care, as well.

Dr. Recio-Boiles:

Well, my comprehensive, as I say when I’m lucky enough to say that, when you have a comprehensive cancer center, I know who is my navigator. And when I say, “Oh, we need public therapist,” I know she will guide, or we need a physician who is trained on sexuality. I have a university based back on me, so I know I can find one and as I investigate it, but I know it’s going to be hard just being alone trying to find it by yourself. So I say that doctors and decide maybe more able to guide you, but I told my patients, “You can search as long as you find places that you trust and you follow those places.”

Participant:

I have two. The second one, I think a lot of us guys here will be interested in, but the first one, I’m not trying to be salacious here. Please forgive me if it sounds that way, but we’ve been married for about four and a half years. I got cancer five months into our marriage. I was fairly amorous, horny, if you will, a guy.

Stephanie Chisolm:

You’re among friends, 99%.

Participant:

Is it unusual to feel more amorous once you can’t have sex very good anymore? Is it that our minds start missing it and so we want it more?

Stephanie Chisolm:

Is there a medical thing? Because otherwise…

Dr. Linehan:

Did you have surgery?

Participant:

Yes, ma’am.

Dr. Linehan:

What kind surgery did you have?

Participant:

Radical cystectomy.

Dr. Linehan:

You had a radical cystectomy.

Participant:

Yes, ma’am.

Dr. Linehan:

So when we do a radical cystectomy or radical prostatectomy, too, we’re rerouting, sometimes rechanging the nerves and sometimes there are nerves that become more sensitive instead of less sensitive. And how patients get arousal actually changes, too after the surgery. So things that maybe would arouse them before are not the same anymore. There’s different ways, and those are things that we have to look at with the patient. But sometimes the things be become hypersensitive in a sense.

Participant:

I’ve found that, well, we’ve found a way for me to orgasm. The orgasm has changed. It’s actually changed. Anyway, the second question had to do with not being able to get an erection, how we’ve been discussing that, and we need to now look further into seeing how we can rectify that. But what are the options? What are good options for a guy to be able to have a good erection and feel good again that way?

Dr. Linehan:

So obviously there’s the pills. So there’s Viagra, Cialis, Levitra, there’s all the different oral medications. So it’s always our first line, go-to therapy. And then if that is not having any effect, and there’s sometimes we do a combination of those medicines, not just one, a combination of them, then if that’s not working, you’re going to look at either doing a vacuum pump, like a penile pump, but a medical grade, you’re going to do injections, you’re going to do, there’s actually medications that you can put down into the urethra that also can aid.

If none of that’s working, then the next step you’re looking at is the implant. And there’s several types of implants. I think that erectile dysfunction in both radical prostatectomy and cystectomy patients is definitely something that we have to address right from the get-go. I think even with radical prostatectomy and good nerve sparing, patients have tend to have good results. With cystectomy, sometimes even with nerve sparing, there’s still some degree of erectile dysfunction and sexual dysfunction. It’s a harder erectile dysfunction I feel to treat in my practice than the prostates. But I mean, I think if you’ve tried all of those, the next steps up are the implants. And again, like you said, they’re usually sexual medicine physicians within each of our practices. I don’t do that for the patients. There’s somebody who does that procedure a thousand times a year, who I would send the patients to.

Stephanie Chisolm:

You never want to go to the doctor that said, “Oh, I read about that in a journal once.” That’s not the one you want to go to.

Dr. Linehan:

No, I watched the YouTube. It was fine.

Stephanie Chisolm:

Right, right. Don’t watch any YouTubes.

Dr. Recio-Boiles:

But also what I hear is… Thanks for this impressive response. What I hear is we never like for a patient to think that they have to stop and, “Oh, I tried the Viagra or the pill and did not work. So that’s the end of the road.” It’s a kind of a conversation of, “Well, I tried what you needed. We did some changes, we tried some medicine, but I’m still not satisfied or I still do not have the quality that I want or I try to achieve. What else?” And keep the conversation flowing.

Stephanie Chisolm:

And remember that not every doctor is going to be comfortable with this. We brought up some wonderful comfortable doctors who are open and not every physician is. It’s their own personal stuff. And also the lack of training. It’s not something that’s incorporated into medical school training, even within urology and medical oncology, unfortunately, because there’s so much they have to learn. That’s one of those things that gets left on the sidelines only for those people who want to pursue it. And so it may be hard, and it may mean you have to get a referral to somebody else who is a specialist in this particular thing that does this all the time. But you have to bring that up because if they’re not even asking you about your sexual function and how that is impacted by the treatments that you’ve gone through and it’s important to you, you need to speak up. That’s a big deal. So what other questions?

Online participant:

You’re online. The question is, do you think there’s increasing need for bladder sparing therapy since patients may want to keep their sexual functions?

Dr. Linehan:

That’s a great question.

Dr. Recio-Boiles:

That’s an excellent question.

Dr. Linehan:

Yeah.

Dr. Recio-Boiles:

I would like to say that it is kind of in every meeting that I’m going recently, it’s kind of like finding that patients who really needs what we call the intensification, that really need the radical cystectomy, and we have to recognize that they really need the radical, but those who can be safe and nowadays how we best know who those patients are. And one of the various topic that I’m developing with SWOG with sexual function, as I just mentioned, is not only one thing. It could be the radical cystectomy. It could be the one who wanted to present, and we don’t have a panelist for radiation that say, “Well, the side effects of radiation in the concurring chemo radiation therapy for bladder preservation, or of the ones who are sparing just with chemotherapy immunotherapy kind of ideas.” So this is an early, very good start for advocacy to say, “Well, what is the sexual function from each one of them?” So I would say these are things that are being discussed at SWOG, the Southwestern Oncology groups and discussing ASCO for bladder preservation because patients want to preserve the bladder because they want to keep their part of their sexual function. Sorry.

Dr. Linehan:

No, no, that was a great answer. And I think deciding on which patients really need radical cystectomy is part of it, but I also think it’s what the patient wants to preserve. So we have a talk about radical cystectomy and they’re like, I don’t even want to take a chance that it could affect my sexual function. Well, there’s other really good options, but that still may have some effect on you. And then there’s other things he was talking about, which is chemo and immunotherapy, but no radiation. And we are still investigating all of that to try to decide if that’s as good as taking out the bladder for your cancer control. But I think if you do have patients where that quality of life is really important, those are the people that you need to offer bladder sparing treatments to.

Stephanie Chisolm:

And we won’t know if people don’t participate in some of these clinical trials just what the impact can be. So remember we had the clinical trial dashboard for finding clinical trials, and they talked about a clinical trial’s, not always a last resort because your doctor doesn’t have anything left on their toolbox. This is a treatment option. So that is a way to pursue some of those things and help build that knowledge base, and it may actually benefit you, too. So always consider that.

Dr. Recio-Boiles:

So yeah, one of the things that I would say in my experience when I mentioned Dr. Garla as a great mentor in New York. If you ask a doctor what’s the most important thing for cancer it’s remission and survival. But if you ask the patient, it is with quality of life, it is not one or the other. So all patients advocating for participating, helping us to understand, yeah, I mean, I’m sure we all want remission, but it has to come with quality. So really, really help us with this to understand that quality is a big goal. We don’t want it to be relayed after.

Stephanie Chisolm:

Just extending a life where there’s no quality isn’t a whole lot of fun. So you want to be able to continue to enjoy. You want to be able to thrive and survive. Both. Those are important things. What other questions do we have?

Mark:

Hi, my name is Mark. And in January of 2020, I had my bladder and prostate removed. Several months later I had an artificial sphincter put in, which wound up being unsuccessful six months later. But throughout all this, and right now, incontinence has been with me for the last three and a half years. What would you tell me or any other patient that has the fear of incontinence during sexual activity?

Dr. Linehan:

So that is a big issue and incontinence in general is a big issue. And of course, when the patients are awake, when you’re awake during the day, you can consciously think about tightening your sphincter and you’re much more likely to be dry. But at nighttime when you’re sleeping or when you’re having sexual intercourse, your brain is not focusing that. So when you ejaculate or orgasm, the urine will come out too because your sphincter is open and it’s supposed to be, that’s how we have babies, right? So physiologically you have to discuss that with them, that even though they may be dry, these other things can also happen. I have had patients, I don’t know if you did a lot of pelvic floor therapy before you had your sphincter, but the pelvic floor therapy can be very helpful, especially for that complaint specifically.

Mark:

Well, maybe you didn’t hear. I had the artificial sphincter, it lasted about six months, and then an infection ensued and I had to have it removed.

Dr. Linehan:

Oh. So now it’s gone.

Mark:

So it’s gone as of August of ’21. And since then I’m back to just straight incontinence. And yeah, they recommended clamps and condom catheters and all that. And for me, it doesn’t work for whatever reason. But still, overall, it’s the incontinence issue in sexual activity that has me hung up.

Dr. Linehan:

And I think in patients that I’ve had in very similar situations, especially because one, we know older patients get higher levels of bladder cancer, and so you’re going to do a cystectomy with a neobladder on somebody who’s in their late seventies. We have a long talk about incontinence because the sphincters don’t work as well when they’re older. So one of the things that I might offer a patient who is having horrible incontinence is to make a catheterizable stoma and divert the urine away from the urethra, which solves the problem with the sex and solves the problem with the incontinence because that becomes the life controlling factor of being wet.

Mark:

I was trying to stay away from the stoma. I was offered four years ago when I had this, you could either go the route of a stoma or neobladder, and I chose neobladder. And that’s what my doctor at Mayo recommended, because I was 68 years old at that point. He said, “If you were 78, I would’ve recommended stoma.”

Dr. Linehan:

Well, there’s the ilial conduit, which is the stoma with a bag, and then there’s a catheterizable stoma so that you’re still dry, but you do have to catheterize and it looks like a tiny little stoma and you wear a band aid over it. It’s called an Indiana pouch. Really. And in certain situations we have converted patients to that to help with incontinence. But I mean, that’s another big surgery, that’s a big decision to make again.

Mark:

Yes, I’ve had enough big surgeries in the last three years. But anyway, thank you doctors. I really appreciate it.

Stephanie Chisolm:

But it does give you another option to bring up with your providers.

Mark:

It’s a great option. Thank you.

Stephanie Chisolm:

And with the Indiana pouch, sometimes they, and it may be different when they have to redo it, but in an initial Indiana pouch, they often use the stoma. They put it behind the belly button so that there’s not a visible stoma during the day until you go to catheterize, which you do have to do with regularity. So that’s just a good…

Mark:

Thank you so much.

John:

Good morning. I’m John. I’m having my bladder out first part of May. My question deals with how to increase the blood flow to help with an erection. Are you familiar with the pulse electronic magnetic frequency science that’s come out of Europe, which supposedly increases the blood flow to the smaller capillary system?

Dr. Recio-Boiles:

Well I’m not, but something interesting now that I have in my mind to read about it. I’m not aware of that.

Dr. Linehan:

Yeah, so there’s actually shockwave therapies and pulse and there’s all kinds of different therapies that you can do prior and after surgery to help increase blood flow. They’re still investigative I think at this point. We’re doing a shockwave therapy after radical prostatectomy patients to help increase blood flow. But I think the most important point that you made is about starting to think about these things before you do surgery. And so we have a protocol that involves Cialis and Viagra that we start the patients on before they do surgery so that we can already enhance the blood flow. I call it penile rehabilitation, but you’re not doing it after you’re doing it before.

Dr. Recio-Boiles:

So yeah, that’s the way that I do, thinking about the blood flow. It is with medication like Viagra or Cialis.

Dr. Linehan:

So are you doing that before chemo?

Dr. Recio-Boiles:

Are doing that before chemo? No, we are not doing that before chemo. But it is one of the first steps that we do when they ask. Yes.

Dr. Linehan:

So the other thing I wanted to ask you that was really interesting about your talk is I didn’t realize that immunotherapy can affect the testosterone levels. So if you have a patient that’s been on immunotherapy for, I don’t know, nine months or something, will you check the testosterone and then replace it if it’s low?

Dr. Recio-Boiles:

Yes. It has come to us at one or two patients that they are really interested in their sex life, male. And we have checked and I have found to be low. And since they don’t have a prostate, we feel more safe to say, “Well, yes, we going to start the testosterone repletion in different ways.” Usually the urologist, Dr. Juan Pollini helps him with that. But yes, we have done that. Yes, I would say the question be, should we medical oncologists should we check when we do [inaudible 01:15:38] we checking to make sure that we don’t have inflammation of the kidneys, inflammation of the liver, inflammation of the thyroid, blood test every cycle. And we are asking questions I think we are not doing and is not, I try to do kind of my own prospective idea with getting standard of care being approved, but sex hormones are not approved to do every cycle. So every two cycles. But should we be looking at sex hormones? We definitely check on the sex hormone when we find perhaps too late, too little, too late, the inflammation of the hypothesis or hypothesisitus and we check on the sex hormone immediately because we expect it to be low.

But really now I’m going to give you another example. The question in my mind is when we bring this to the discussion is, we know that we are missing some inflammation of the heart and we can see early signs of inflammation of the heart. If we were just monitoring the basic biomarkers for heart health, troponin and BMP and now should we be screening so often hormone levels to make sure that we are not missing? Again, we’re just talking about someone, complains as a case report, three complaints as a case series, but should be more aware that we are missing because we’re not asking about sex function and we are definitely not testing about sex hormones.

Dr. Linehan:

And I wanted to say for Svetlana who is supposed to be here today, one of the things that she has specialized in, especially for women is teaching other doctors like myself. She goes around to conferences to show us ways to preserve the nerves in women. Because when you do a cystectomy and a woman, you generally take out the ovaries, the uterus, and part of the vagina. Well, what we used to never think about was that all of the nerves for sexual function into the vagina, sorry, are actually around the uterus. And so you have to dissect the nerves off the uterus. Well, it’s the same thing for the prostate. The prostate, the nerves are around the prostate and they’re synonymous organs in both the sexes. So I think that these things are changing and doctors are focusing more on sexual function and quality of life. But to your point, you need a team because we’re busy, it’s hard to have these conversations with patients. You need other doctors and other physical therapists to be able to be with the patients long enough to have legitimate conversations so that they can actually get some good treatment.

Stephanie Chisolm:

And unfortunately that responsibility is going to be on you to ask for that team because as you see, we’ve got great people here, but they’re not every doctor. They don’t all have that same level of comfort. We have time for one more question and then we’re going to break and then we have another session coming up. So let’s go for the last question.

Participant:

Thank you. You kind of just answered my question about the penile rehabilitation and I had a nerve sparing robotic radical cystectomy and my surgeon felt pretty strongly about using it and she felt that not only does it help treat potential ED but also improves blood flow and decreases atrophy and that kind of thing. But when I’ve spoken to many other people who’ve had the surgery, they don’t get it and it seems like it’s very variable among surgeons. Is it something that’s done commonly? Is there, is it evidence based, what are your thoughts about that?

Dr. Linehan:

Well one, it depends on the type of bladder cancer you have and the aggressiveness, whether they’re going to go through the nerves bearing. But yeah, it is something that we do talk about a lot about how we can make that better for patients. There’s even little devices now that you can use during the surgery like neurosurgeons do to test where the nerves are because sometimes anatomically in every patient they’re actually in different places, and you may have cut it and you didn’t even know. So there’s all these things that we’re trying to do to make it better and better and better. Actually I wasn’t speaking so much about the nerve sparing. I was talking about the use of the Viagra or Cialis for up to a year…

Penile rehab.

Stephanie Chisolm:

Post-operatively. The penile rehab portion, is that pretty universal? Is it evidence-based? Because a lot of people I’ve talked to haven’t had it.

Dr. Linehan:

Yeah, I mean yes, it’s definitely evidence-based and just starting before the surgery and continuing afterwards because as you know, the nerves and the blood flow and things will regenerate for a certain period of time after the surgery up to about two years. And if you have people on penile rehabilitation, you do end up seeing a good recurrence of function. And it’s weird because sometimes I don’t see that till 16 months after the surgery and then it clicks on.

Stephanie Chisolm:

So you keep them on for the whole two years?

Dr. Linehan:

Yes, the whole two years.

Stephanie Chisolm:

Thank you.

Dr. Recio-Boiles:

And that begs the question of an early conversation. You don’t want to ask the doctor at the end of all these changes, but early on pointing out what is your quality of life preference, sexual preference, penile, rehabilitation early on and as a team that we medical and colleagues feel comfortable like, “Oh, the patient is coming with these goals and we going to continue that care.” So it is really, really important. But I do say that addressing it early with all the support before and it is helpful to think early on, not late.

Stephanie Chisolm:

Thank you.

Dr. Recio-Boiles:

Thank you so much for coming here.

Stephanie Chisolm, BCAN Director of Education and Advocacy:

Very wonderful.

Dr. Recio-Boiles:

Because I really felt that I wasn’t getting the circle questions. Thank you so much for being here.

Dr. Linehan:

You’re very welcome. Thank you so much.

Stephanie Chisolm:

I hope that this was useful. We’re going to take a 15-minute break. We’ll meet back here at 10:30 for the thriving and surviving panel. I’m really looking forward to that, as well. But I hope it has been informative, giving you some thoughts, some questions for your providers.