This episode includes content related to reproductive organs and sexual health and may not be suitable for all listeners.
A transcript of this episode can be found here: https://marrowmasters.simplecast.com/episodes/mens-sexual-health-gvhd/transcript
In this podcast, we welcome Dr. Jose Flores, an expert in sexual and reproductive medicine at New York's Memorial Sloan Kettering Cancer Center. We dive deep into the often challenging but crucial topic of male sexuality, particularly in the context of cancer treatment and graft versus host disease (GVHD).
Dr. Flores begins by distinguishing between sexual dysfunction and erectile dysfunction (ED). He emphasizes that sexual dysfunction encompasses various issues beyond just achieving erections, such as ejaculation problems, orgasm issues, decreased sex drive, and changes in penile shape. This broader understanding is essential when discussing sexual health with patients.
The prevalence of ED after cancer treatment is notably high, with up to 60-70% of men experiencing it post-chemotherapy, and even higher rates following pelvic surgery, specifically. Low testosterone levels also contribute significantly to sexual dysfunction, particularly after treatments targeting the pelvic area.
A critical aspect of addressing ED is breaking the wall of silence around it. Dr. Flores stresses the importance of open communication between patients and healthcare providers. Initiating conversations about sexual health can lead to better assessments and treatments. He outlines the initial steps in diagnosing ED, including patient questionnaires and lab tests, and underscores the need for healthcare providers to proactively ask patients about their sexual health.
The discussion then shifts to the impact of GVHD on sexual function. Dr. Flores notes that about 70% of men post-bone marrow or stem cell transplant suffer from low testosterone and ED. Unfortunately, without intervention, these issues do not typically resolve on their own. Patients must seek help to explore treatment options.
Dr. Flores explains the ED treatment model, which follows a stepwise approach. The first step includes lifestyle modifications and the use of PDE-5 inhibitors like Viagra and Cialis. If these are ineffective, injection therapy is the next step, followed by mechanical aids like penile pumps and, as a last resort, penile implants.
Myths and realities of PDE-5 inhibitors are addressed, clarifying that these medications require proper usage, including an empty stomach for Viagra and sufficient time for absorption for Cialis, along with sexual stimulation to be effective. Proper education on these aspects can significantly enhance their effectiveness.
Low testosterone, particularly after cancer treatment, is another major topic. Dr. Flores discusses the complexities of testosterone replacement therapy (TRT), including potential risks like polycythemia, effects on fertility, and the necessity of screening for conditions like sleep apnea and prostate cancer before starting treatment. He advises patients to preserve fertility before undergoing cancer treatments and outlines options for those with compromised fertility post-treatment.
The conversation concludes with Dr. Flores urging patients to be proactive about their sexual and reproductive health. He highlights the importance of seeking specialized care and the positive impact it can have on overall quality of life. Throughout the discussion, Dr. Flores's compassionate approach underscores the importance of addressing these sensitive issues openly and effectively.
Memorial Sloan Kettering Cancer Center: https://www.mskcc.org
International Index of Erectile Dysfunction: https://www.uptodate.com
Testosterone Replacement Therapy Information: https://www.urologyhealth.org
This season is made possible thanks to donations from Syndax and Incyte.
Peggy Burkhard:
Hello, everyone. So, today we welcome with us Dr. Jose Flores, who works in sexual and reproductive medicine and urology at Memorial Sloan Kettering Cancer Center.
Dr. Flores will cover male sexuality on this pod, a subject that can sometimes be difficult, but is so important. We're going to cover a lot of ground, and our hope is that you will feel more empowered to talk to your doctor candidly after listening today.
Thank you so much, Dr. Flores, for being with us today.
Dr. Jose Flores:
It's my pleasure. Thank you so much for having me here.
Peggy Burkhard:
So, let's jump right in. Let's talk about the difference between sexual dysfunction versus erectile dysfunction.
Dr. Jose Flores:
Yeah. This is a key point when having the discussion with the patients because sexual life is more than one erection for a male. Sexual life can be sex drive. After surgery, there are so many other aspects in the sexual life that can be affected with any treatment, not only the erections.
It could be a trouble with ejaculation, it could be issues with the orgasms, it could be issues with the sex drive, it could be issues with the penile shape. Sometimes we have some curvature in the penis, it can affect or can impact their sexual life in those patients.
So, that's the reason why I said sexual dysfunction is more than erectile dysfunction. There are so many aspects that we can talk about it with the patients.
Peggy Burkhard:
So, let's talk about the prevalence of erectile dysfunction itself, ED, after treatment.
Dr. Jose Flores:
Well, it depends on the type of treatment, obviously, but it is very often, and we see in our practice, in men after cancer treatment, the prevalence of sexual dysfunction is really high. They have some problem with the erections, almost half of them or more, but obviously depends on the type of treatment.
For example, after any pelvic surgery, the prevalence of erectile dysfunction could be much higher. And after chemotherapy, it has been reported up to 60 to 70% of the men have some erectile dysfunction.
But what about low testosterone? It has been also super high. The men after chemotherapy, after radiation, directly and directly going to impact the sexual lives too, especially if the radiation was located around the pelvis area.
Peggy Burkhard:
Dr. Flores, let's talk about the initial assessment regarding erectile dysfunction.
Dr. Jose Flores:
Well, this is a good point because everything must start when I said we need to break the wall. We need to start talking about it. I know many men- they don't want to talk about it for many reasons. They're ashamed, they don't want to talk, the patient is not feeling confident to talk about sexual life.
So, this is also a point for the providers. We need to break the wall to talk about sexual dysfunction, to talk about erectile dysfunction. This is the first concept.
And I tell the patients always, you can start telling your doctor, “I have some problem. Can we talk about it? I have some problem with my partner, and this is the most important aspect in my life. Can we talk about it?” So, try to start the initial discussion, the initial conversation.
And then we have many surveys or many questionnaires that we can ask the patients so they can complete it, and we have a score. And obviously, for example, the one is the most important is an international index of erectile dysfunction.
That questionnaire can give us a score and can tell us if the patient is having some erectile dysfunction and the degree of erectile dysfunctions, mild, moderate, or severe.
And then based on that, we can have other assessments, labs, physical exams. There is a lot that we need to evaluate when a man is complaining about erectile dysfunction or sexual dysfunction.
But like I said before, the first step, we need to break the wall because this is important for your way of life. This is important for your sex life or for your relationship. So, the first step, we need to break this wall to talk about sexual life. Don't be shamed about it.
Also, it's a message for the providers, the doctors, the NPs, the nurse. Ask your patients, “Are you having any issues in your sexual life?” With the simple questions, many patients can open and start talking about it. And we can see the patients start talking about, “Oh, I had these expected issues. What we can do?”
And the most important, there are treatments to improve the sexual life. There are many options that we can help the patients and most of things is in an easy way. But obviously, first we need to go with different assessments. But the first thing to do, we need to break the wall.
Peggy Burkhard:
Dr. Flores, the season is about Graft Versus Host Disease and the things that are really hard for people to talk about. We’re covering female sexuality and of course, male sexuality with you.
Let's talk about what it's like for patients post bone marrow transplant, they're dealing with Graft Versus Host Disease. How does their sexual function play into this topic of conversation?
Dr. Jose Flores:
Well, this is a huge point. There is so muchresearch about that. Unfortunately, there is not so much data.
The only thing that we can tell you, the prevalence of the sexual dysfunction, low testosterone in erectile dysfunction is very high. Around 70% of the men after stem cell transplant or bone marrow transplant, they have low testosterone and erectile dysfunction, especially the young population.
So, we don't know why, what is exactly, how this is affecting, for what reason this situation we can see in these patients after the treatments. So, we don't know yet.
The only thing that can tell you that we know is the prevalence is very high. And that's the point when I said before: breaking the wall, because likely the patients after a stem cell transplants or bone marrow transplants, they're having some issues in the sexual life.
Peggy Burkhard:
Yes. And do you see, as time goes on, does it seem to get better for them as the graft versus host disease kind of burns off?
Dr. Jose Flores:
This is a good question. Based on the data that we have around two, three years, the prevalence is almost the same. So, this is the most important. Without treatment, likely the situation is going to be the same. It doesn't change, it doesn't improve.
You need to look for help as your doctor, as your provider, health providers, what to do because you're not going to have some resolution or it's going to start getting better just by itself. Unfortunately not.
You need to look for some assessment and treatments. That's the key point. That's the reason when I said break the wall and start talking about it because we have options. We have treatment that we can discuss to improve this big aspect in the weight of life.
Peggy Burkhard:
Oh, you have such a way of talking about this. I would imagine your patients feel so comfortable with you, but we know that's not always the case. So, thank you so much for sharing how you handle this and stressing the importance of taking action.
So, let's talk about what exactly is the ED model of care?
Dr. Jose Flores:
To treat erectile dysfunction. We are always talking about the steps. Step one, step two, step three, and step four.
The step one, we are always talking about lifestyle modifications, sleeping better, exercising, eat better. Not only for your sexual life, for your health status in general. And we're talking about using PDE5 Inhibitors, classics: sildenafil, tadalafil, the classic tablets that everyone knows in the market.
This always a start where it's our first start point, which have different kind of treatments. It could be taken daily, or it could be taken as needed. It could be a combination between daily one and as needed. And I can tell you, 80% of the men are responding very well to the step one.
And then when we're doing the assessment, the evaluation, and we ask the patient, “How you're doing, how you're doing with your sexual life based on the treatment?” Either responding well, we keep it with step one. If not, we start talking about the other steps.
Step two, we're talking about the injection therapy. The injection therapy is medication that we train the patients how to do it, how to prepare the medication. This medication is injected. We need to inject the medication directly in the penis.
I know sounds horrible. Nobody wants a needle in the penis. But for many men who want to have sexual activity and the pills, the tablet are not working, this injection therapy is an excellent option.
And again, when the step two is working well, most of the time 80% of them may be responding to the step two, we keep it.
But then when it's not responding in our practice, we do other assessment to evaluate for what reason the pills and the injections are not working well. And then we're talking about the step three and the step four.
The step three is talking about penile pumps. It's a device that helps get the penis inside the device, pump it up, and that way you're getting blood in the penis. And that way you're getting erections.
And the final step is just talking about penile implant, penile prosthesis. That's always our last step. We always tell the patients, go a step by step. Don't jump from the tablet to the penile implant. Just go a step by a step because nothing can replace the natural erection. Or versus one that is mechanical for the penile implant, penile prosthesis.
So, always we insist the patients just go step by step because likely you're going to be just between the step one, step two, between tablets and injections. And talking to the patient, options to go step by step is going to be based on your response.
Peggy Burkhard:
Okay. Wow, this is terrific information. Thank you so much.
Alright, let's talk about Viagra and Cialis. Let's tackle the myths and reality of it.
Dr. Jose Flores:
Well, that is a good point because I always tell the patients, there are no magic pills. This doesn't mean you take it, you get an erection, no.
So, number one, for example, for sildenafil (Viagra), you need to take it with empty stomach. No food, no alcohol, because the food or alcohol is affecting the absorption of the medication. So, with Viagra (sildenafil), you want to maximize the action of the medication, you need to take it with empty stomach.
And then one hour after, you need sexual stimulation. It's not going to happen that you're going to get an erection and ready to have sexual activity, no. You need engage, you need foreplay, you need engage in the sexual activities. And the way, you can get an erection. That's with Viagra or sildenafil.
With tadalafil (Cialis), the food or alcohol intake doesn't impact the absorption, but the absorption is a slow process. So, you need time to get the maximum action of the medication for the erection.
So, you need at least two hours, take the tadalafil, take the Cialis, and two hours after or more get sexual activity, get engaged. Again, you need sexual stimulation for this medication to get in action, to get an erection.
So, like I tell the patients, there are a couple precautions that you need. Especially with Viagra sildenafil, you want to have an erection, you need to take it with empty stomach. And both pills, you need sexual stimulation to get an erection. This is not a magic pill.
This is important based on the UA guidelines, around 60% or to 80% of the time when the patient is telling us, oh, the pills are not working is because they're not taking them properly.
Peggy Burkhard:
That is so interesting.
Dr. Jose Flores:
Most of the doctors don't talk about it. So, that's in my area obviously working. One of the first recommendations is the way to take it. Because the main reason when the pills are not working is because the patients are not taking them properly. So, that's the reason. And I think it's important information, how they can take it.
Peggy Burkhard:
Okay. Are they a part of step one then?
Dr. Jose Flores:
Yes. It's always lifestyle modifications and they use the oral medications, the PDE95 inhibitors, Viagra sildenafil, Cialis tadalafil.
Like I said before, there are many different ways. It could be taken as needed, daily, the different dose, the daily dose, the full dose for when it's as needed. Or combination, daily dose plus as needed.
Peggy Burkhard:
Okay, great. Are there any other ED treatments to discuss today?
Dr. Jose Flores:
Another option when the pills, the oral medications are not working well, injection therapy. Injection therapy is a good option. 90% of the men can get an erection with injections. But you need training. It's important to have the training. It's important how you know to do it because there are a couple of safety issues.
The main complications when you're doing injection therapy is if you're going to have a prolonged erection. That's an erection that is lasting more than two hours. That is also dangerous.
So, here in our practice at the MSK, we have a special training, a special program, and we tell the patients what to do in case they're having prolonged erections.
I can say in our practice, our (incidence of) prolonged erections is very low, but it can happen. So, we prepare the patients what to do. This is how we may consider your thinking about the injection therapy.
Peggy Burkhard:
Okay. Thank you so much. So, let's move on and talk about low testosterone prevalence after cancer treatment and how you make that initial assessment.
Dr. Jose Flores:
Again, similar to what is going on with the erectile dysfunction, low testosterone is highly prevalent after a stem cell transplant or bone marrow transplant.
The reason, there is probably some interaction with the Leydig cells in the testicle level. In the testicles, we have those cells we call Leydig cells, the area where you're producing testosterone.
So, they are not having a good production of testosterone and you are ending up with low testosterone. And this again, highly prevalent. Again, half of the men after bone marrow transplant or stem cell transplant, they're having low testosterone.
Peggy Burkhard:
Okay. What about safety and treatment options regarding low testosterone?
Dr. Jose Flores:
Oh, wow. Really great question because there are so many aspects around safety. Because first, testosterone is under control for the DEA. So, it's not just a regular prescription, it's under control. I think it's a type three substance that is under control.
So, when I said about safety, there are so many aspects that we evaluate before the starting any testosterone treatment and we have what we call a testosterone checklist before.
The most important aspect is fertility. If a man is still thinking about babies in the future, using exogenous testosterone, intramuscular testosterone, or subcutaneous testosterone, oral testosterone can suppress the sperm production and ending with it for that temporary azoospermia. Meaning the man cannot get sperm in the semen.
And obviously without spreading the semen is not possible to get a pregnancy. That situation most of the time is a temporary, but it can be permanent.
So, we always advise the patients, if you are still thinking about fertility in the future, it's important that you need to know this aspect, avoid any testosterone. And there are other alternatives, other options to increase the testosterone levels without affecting the sperm production.
So, it's just another aspect that the patient needs to talk about that with the doctors. Because if they're using testosterone, they can suppress the sperm production. That's the number one, one of the issues.
Another complication that is very common when you're doing testosterone treatment is that we call polycythemia, the hematocrit and hemoglobin levels going up. And that is the point with going up too much. It can be associated with heart attack, stroke, deep venous thrombosis.
So, it's another aspect that we need to counter. And the main reason that is happening in many times, the patient is having sleep apnea. So, one of the aspects we are trying to evaluate before starting any testosterone treatment, if the patient has sleep apnea.
For men over 45, we need to evaluate for prostate cancer. Because if you have prostate cancer, you don't know, that you start with testosterone treatment, that is also, can get some complications with your prostate cancer. So, one of the aspects we need to evaluate first is the patient doesn't have prostate cancer in a man 45 years or more.
Another aspect always we evaluate is that we call transference risk. If the men is in contact with any kids or any children under 12 years old and using testosterone in gel, even though the patient is washing the hands very well, they can keep testosterone in the hands and can transfer to the kids.
There's an FDA warning about that. So, in our practice, we don't prescribe testosterone in gel if the man is having contact very often in close with any kids that are under 12 years old.
So, as you can see, there are so many aspects in safety, there's so many aspects you need to evaluate before starting any testosterone treatment.
So, it's very important for the patients go to the right provider who knows more about testosterone because it's a treatment that can obviously it's going to help you over the quality of life. You're going to have more energy, you're going to have a better sex drive, but it must be safe. So, it's very important for the patients to go to the right providers.
Peggy Burkhard:
Okay. I have a question for you about a younger patient, so a young adult. Do you find that it's hard for them to talk to you about this when their fertility is a consideration? Is it really difficult for these young men?
Dr. Jose Flores:
Yes, it's difficult. That's when I started with, we always need to start breaking the wall. Probably because I've been working for this area so many years, for me it's easy to talk about it.
I understand for my patients it's not easy. So, always starting with the first questions, “Are you still looking for more babies in your life?”
Peggy Burkhard:
Yeah. Or any babies if they're young and they haven't had any yet.
Dr. Jose Flores:
Yeah. And then they say, “Yes, no.” And based on that is I start having the discussion. For the patient it’s not easy to talk about fertility. This is critical because patients after stem cell transplant or bone marrow transplant, usually they're young population.
There are so many concerns about fertility, there are so many aspects to start talking about it. So, I always tell the patients, if you have some concern about fertility and you had those treatment before, the first things that you have to do is check your semen analysis. You have to do a semen analysis. Because it's the first step.
Don't wait and say, “Oh, I have one or two years trying to conceive to get a pregnancy and it is not happening.” Probably because there's some issues over there. And again, there are treatments that we can help you to improve your fertility, to get the chance to get a pregnancy.
But we need to start with the first step. Semen analysis, hormone labs, hormone profile. But again, we need to break the wall. We need to ask the patients. And one of the simple questions, are you still looking for more babies in your life or you want a baby in your life?
Many times they're coming with a partner. They have not been talking about it, but the partner wants one and they say, “Hey, what is going on? What is the status on this?” And the easy answer for that is, “Yes, we can start talking about it and then we have options.” That's the most important.
Peggy Burkhard:
Yes. Well, and that leads me to think about preservation and here they are about to fight for their life, and they have to be thinking about preserving, is that correct? Preserving their sperm and getting that-
Dr. Jose Flores:
That's correct. That's the key point. The best things to do always first, try to preserve your fertility before any treatment. The guidelines are clear. When you're having all these treatments, you're thinking about fertility in the future, try to do some fertility preservation.
Banking sperm is easy. In my location in New York, we have so many options to go a place, bank sperm over there. Or we say to the patient, “That is going to be your savings account for your future.” A savings account because you never know what is going to happen.
There is a possibility obviously, the sperm is going to get recovered and it's going to be no problem with your semen.
But there is a huge possibility unfortunately, after treatments, especially bone marrow transplant, around 30, 40% of the men, they have a normal semen analysis. There's a possibility they're going to have some issues with the fertility.
So, obviously first going to bank sperm is going to be a good saving account for the future. And then the patient needing to bank sperm, for example, we start talking about what to do. What is going to the options, the treatment, medications, surgical procedures?
There are some medications we can start and give the chances around 50%, the chances to improve the semen analysis. If not that it's not working, and then we are talking about surgical procedures. So, one of them is called testicular sperm extraction.
We try to go into the testicle and open the testicle. And under microscope, we're looking for the best tissue because when we identify the best tissue, we send it to the sperm bank, the processing, we have around a 60% chance to find sperm over there.
And then those sperm can be used for any fertility procedures, especially in vitro fertilization. So, the final outcome is to get a pregnancy, to get a baby. So, as you can see, we have options to talk with the patients, but again, everything we need to start.
And as a doctor, always asking the patients, but I'm telling them, so for our audience, one way to start talking is asking the providers and see what to do, what options, where they can have to improve those aspects.
Peggy Burkhard:
Oh, this is terrific. Thank you so much. I think we've covered just about everything. Is there anything else that you would like to talk about before we wrap things up?
Dr. Jose Flores:
Well, always I tell the patients, be proactive. Be aware about your health status. Don't wait until somebody's going to ask you about your sexual life or somebody's going to ask you about your fertility. Be proactive.
You be first, break the wall and start asking. Tell your doctor, say Doctor, “You know what, that is happening to me. There is any help?” Or ask for a referral.
We have doctors who have been training in a sexual and routine medicine in the US, so there is always someone to go and ask. Ask for help, ask for options. But I think the main concept today is be proactive and ask for help.
Peggy Burkhard:
Oh, has anyone ever sent you a picture of their baby?
Dr. Jose Flores:
Actually, yes. A couple times. And that's made me my day because it’s telling me, oh wow, I'm doing a good job. And at the same time, I'm feeling so frustrated when I have to tell the patients, “I'm sorry we didn't find any sperm.” So, I have both sides.
It's always, the expectation is very important for the patients. I tell the patient, “I'm here to offer you options, you're making the decision.”
But then also, at the same time, you need to have real expectations because I know for fertility, when we don't find sperm with the surgical procedure, that is always our last option, is a really bad news.
But at the same times we find sperm, it's good news. And a couple of times I got some of the pictures, and those the happy ending. But sometimes it's not. But again, real expectations. But again, I think the most important for the patients, be proactive.
Peggy Burkhard:
Well, this sounds terrific. Thank you so much. You said it several times, be proactive, break the wall. Do you want to talk about that a bit?
Dr. Jose Flores:
So, for example, yesterday I had a TeleMedicine couple. After bone marrow transplant, both in front of me and they're telling me, “Thanks, doctor. We're getting back to the sexual life after one year with the treatment for ED.”
And I told them they made my day because that's exactly what I'm doing. And like they say, “Doctor, thank you so much. We are now, back to having a good relationship.” And you see the changes, man and woman.
So, fixing different aspects. Testosterone, ED, sexual life. We have a psychotherapy too. I didn't talk about so much about it, but our therapist, Dr. Chris Nelson, helped us with all the mental part.
I always tell the patients 50% is physical, 50% is mental. My role is to fix the physical part but are so many aspects in the mental part that I cannot fix.
And my work partner, Dr. Chris Nelson, who's working with therapies, working with the mental part. And so, many times I see so many changes because they're fixing the anxiety, depression, many things around when they're having some issues about erectile dysfunction or fertility.
So, at the end, I always tell the patients with the one appointment or talking about most of the time it's not enough. We need three or four times to talk about it. Try a couple treatments, test them, see how this working or not, see how this doing with the therapist, with Dr. Nelson.
So, wow, at the end of the road, I always, I'm telling you, I see more success than failures. That's a reason you say, wow, I'm doing the right job, and I like it.
Peggy Burkhard:
Should we call you Dr. Romance?
Dr. Jose Flores:
I don't know, I don't know. Yeah, I need to think about it, I’ll think about it. But I think we're always telling the patient because sexual life, again, is more than erections. There are so many aspects.
Many times I spending, I don’t know, 40 minutes talking about different aspects. Mental and relationship. There is not only one, it's two in the sexual life. Physical part, mental part. So, that's the point. There are so many aspects that we need to cover.
Peggy Burkhard:
Thank you so much.
Dr. Jose Flores:
Nobody is going to go if you don't go first. Nobody's going to be worried about your sexual issues or your fertility issues if nothing is starting first from you. Because everything is going to be much easier and you're going to find the best option and solutions to improve your quality of life if you are starting the process.
Talk to your doctor, ask them, “Hey, any options for this issue that I'm having and affecting my relationship with my partner? Or I want to have a baby in the future, I don't know what to do.”
Let us break the wall. Let us start be proactive because there are so many options around, there are doctors with the training to help you with that. So, I think that should be the first step and the main message coming from this podcast.
Peggy Burkhard:
Well, thank you. Thank you so much for handling a very delicate subject in such an incredible way.
Dr. Jose Flores:
It was my pleasure. Thank you so much.