Erectile Dysfunction After Radiation

Dr. Irving Kaplan is a radiation oncologist at Beth Israel Deaconess Medical Center and an Assistant Professor at Harvard Medical School.

Prostatepedia spoke with him about erectile dysfunction after stereotactic body radiotherapy (SBRT).

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Why did you become a doctor?

Dr. Irving Kaplan: I started out as a basic researcher. But when I was in medical school, I realized I’d much rather deal with people than petri dishes. I decided to do clinical medicine.

Have you had any particular patients who’ve changed how you see your own role as a doctor?

Dr. Kaplan: Every patient brings something different. In your training as a radiation oncologist, you see patients all throughout the course of treatment, sometimes even in a palliative setting. You learn a lot from patients.

How common is erectile dysfunction (ED) after SBRT?

Dr. Kaplan: Evaluating erectile function after radiation has always been a difficult issue. We have to rely on patient questionnaires. If we relied on what the doctors recorded in their notes, it wouldn’t be valid because doctors overestimate how good their patients’ erections are posttreatment. We have to rely on patient-reported outcomes. And that’s very complex.

There are many factors that determine if a person will develop ED after treatment. Radiation doesn’t cut the nerves, but it does age them. If there’s a natural decline in a man’s function over time, radiation pushes them down along that curve by four to five years.

A young patient, meaning under 65 or so, who has good erections before treatment, has a 75 to 80 percent chance of having no change in his erections for two or three years. Further down the line, he can start to have problems, but it’s really no worse than with any other form of radiation. There are no direct comparative studies, though, in which half the patients got one form of radiation and the other half got another.

We do have models that people have created, though, in which you plug in a patient’s age, current function, whether or not he has diabetes, his body mass index, etc.—all things that impact erections —to predict his chances of having ED after external beam or brachytherapy.

Patients receiving radiosurgery are not statistically better or worse than those getting other forms of treatment.

What kinds of ED treatments are effective after SBRT?

Dr. Kaplan: There is a big difference in ED treatment after surgery versus ED treatment after radiation. After radiation, we use medicines called PDE5 inhibitors—Viagra (sildenafil), Cialis (tadalafil), and Levitra (vardenafil). If taken appropriately, these tend to work 80 to 85% of the time. We use these medicines in patients who have good erections and then start to develop some mild ED.

If someone already needs Viagra (sildenafil) or other medications before radiation, they often need a bump up in their dose after radiation but are also more likely to have longer-term issues.

In addition to medications, there are injections, vacuum devices, and penile prostheses.

Is there anything a man can do before SBRT to reduce his risk of ED after treatment?

Dr. Kaplan: I don’t think that has really been tried very much. With regular radiation, they did try using low-dose Cialis (tadalafil) during treatment. That study really didn’t show much of a benefit. The idea was that if you keep the blood flowing the way it normally should during radiation, that blood flow should be better after radiation.

It was a good idea, but it didn’t pan out.

Again, I’m not differentiating between radiosurgery and regular external beam or brachytherapy.

What advice would you give to patients about to undergo treatment?

Dr. Kaplan: Before I see a patient, I get a baseline in terms of their bowel, bladder, and sexual functioning through some standard questionnaires. This helps guide the discussion. Especially in younger patients who do have pretty good function, sexual function is always part of the discussion.

Again, there is no standard patient. Some patients can have very good erections, but they have decreased volume of ejaculate after radiation. You get that with surgery as well. For some men, that is a big deal.

We discuss all aspects of sexual functioning, not just erections.

A lot of men are nervous about taking drugs like Viagra (sildenafil) because they see the advertisements. One side effect listed in commercials on American TV is the possibility of prolonged erections of more than four hours. One patient who was in advertising thought that was a great advertising ploy.

Too many men, I think, who really want to have good erections are turned off by the medications but there usually aren’t any contraindications. They’re very widely prescribed. Patients should not be so scared about taking them. I have a lot of patients who complain bitterly. I give them a prescription, but the next time I see them, they haven’t filled the prescription because they’re scared, or their wife tells them not to do it.

There can be a lot of reluctance, but in my clinical practice, they are extremely well tolerated and can work.

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Can You Self-Manage Your Symptoms?

Dr. Sarah Hawley is keenly interested in decision-making among cancer patients and physician-patient communication. She recently completed a study that looked at using automated voice-response technology to help veterans self-manage erectile dysfunction, urinary incontinence, bowel incontinence, and general loss of vitality after prostate cancer treatment.

Prostatepedia spoke with her about her study and its implications for men with prostate cancer.

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How did you come to focus on decision-making in cancer patients? Why patient-physician education?

Dr. Sarah Hawley: I have had a long-standing interest in cancer outcomes and delivery, growing out of my doctorate program. My postdoctorate program was in the area of cancer care delivery and quality and studying access. As part of that, I became interested in how decisions that patients make, both on their own and in collaboration with their providers, influence the care they get. I noticed that even in similar health systems there were groups of patients who got different types of care. Some people get too much care; some people are not getting enough care.

I became really interested in the role that the decision-making process plays in that. Could that be a potential mechanism for improving access and outcomes for patients? Part of that is the patient-physician communication process and the patient-physician-caregiver communication process. Many patients have loved ones who join them in making these very difficult and challenging decisions.

How did you come to be working with patients from the Veterans Administration?

Dr. Hawley: I’ve been on the faculty of the University of Michigan and an investigator in the Ann Arbor Veterans Administration (VA) center for clinical management research since 2004. When I came to this position, it was a joint position. I had not worked with veterans before. I had not worked in the VA system before, but I was really excited about the chance to study communication and decision making in the Veteran population.

As part of my career over the last 10 or so years, I’ve been able to do similar projects, both within and outside of the VA, and I have looked at veterans and non-veterans. It’s been very rewarding to be able to do that in both settings.

How common is prostate cancer among veterans?

Dr. Hawley: Obviously, the veteran health system is predominantly male. Although that has been slightly changing, especially in more recent years, it still predominantly services male patients. Prostate cancer is the most common cancer in veterans. Lung cancer remains the most commonly diagnosed cancer outside the VA.

Approximately 12,000 veterans are diagnosed with prostate cancer every year. Most of those men have early-stage prostate cancer, partly because of the use of PSA screening to identify potential prostate cancer as opposed to identifying later-stage cancer, which has metastasized. This means that the patient has to make a treatment decision about how to manage his cancer: surgery, radiation therapy, or, increasingly, active surveillance, which is an active management strategy without any medical intervention. That is a complicated and difficult decision and one that veterans face daily.

Talk to us about the study you did on self-managing symptoms after prostate cancer treatment.

Dr. Hawley: To do this study, we took a jump from the decision-making side of things to the survivorship side of things. A patient who has received a cancer diagnosis—of any cancer— makes a treatment decision early on: surgery or radiation. As I mentioned, in prostate cancer there is now the option of active surveillance. Early-stage prostate cancer is very survivable. Most of the patients live and thrive into survivorship.

However, many of them have received surgery or radiation. Both of those treatments have side effects, which are very present in the first few months following treatment. A lot of these side effects remain issues for men for months, and even years, following their diagnosis. Patients then transition from that initial treatment phase into survivorship. But there’s no clear time point when that happens. They are released back into their regular follow-up care and do quite well except for these symptoms.

Programs do not really exist, either within or outside of the VA, to help men who are dealing with these long-term symptoms.

The symptoms can include urinary and sexual symptoms. They can have problems with incontinence and pain with urination. Men can have impotence. There are also some bowel problems that men experience and general health or vitality issues.

Those are the grouping of symptoms that we were interested in trying to help improve in this long-term survivorship population. Again, this is a group that hasn’t really been the target of many interventions. All of these symptoms, to some extent, can be self-managed. There is a trajectory of less serious to more serious symptoms.

One of the things that we try to do is help the patient understand when the symptom is so serious it may need a consultation with a specialist.

How was your study structured? How many patients did you have?

Dr. Hawley: We developed an intervention, which was based on some prior work that our team had done, using automated voice-response technology: you get a phone call and can interact with the phone system, not a person on the other end. We used that approach to measure symptoms using an established measure of prostate cancer symptoms. The EPIC, or the expanded prostate cancer index, is an established measure that assesses urinary, sexual, bowel, and general health.

We programmed that into an automated system and allowed men to interact with it. After that interaction, they could choose through the automated system one of the symptoms that they felt they wanted help with. We then mailed them a tailored newsletter with information about the symptom they had chosen to focus on and what they could do at home. We also included information about when it’s more important to seek specialist care.

We also had a component of the newsletter that focused on coping. Some patients deal with these symptoms for a long time. Whether we can actually improve the symptom or not, we felt it was important to offer coping strategies based on cognitive behavioral therapy.

The intervention consisted of four automated phone call assessments followed by a newsletter over a four-month period.

What did the control group get?

Dr. Hawley: They got one newsletter, which focused on general symptom self-management. Symptoms can be self-managed. Be aware of that. These are things that you can do at home. You can talk to your physician if things get worse. The newsletter wasn’t tailored to a symptom of their choice. It didn’t include the coping strategies based on behavioral therapy approaches.

What did you find?

Dr. Hawley: The overall study was a randomized control trial. We enrolled men from four VAs and randomized them online to one of those two groups. At five months, we evaluated their symptoms using the EPIC, their confidence and their ability to manage symptoms, and then some secondary outcomes related to how they viewed cancer and their outlook. What we found in the overall comparison between intervention and control arm was a slight signal in some of the intervention measures of being better than in the control measures but nothing was statistically significant.

When we did a more detailed analysis we saw a positive effect in the intervention arm in each area that men chose to focus on. That was really exciting to see.

It suggests that this intervention can be useful in helping men improve their symptoms over time. We also found that the patients themselves thought the intervention was extremely positive. We had extremely good participation and experience rates, even in the intervention arm, which did require a fair bit of work with four phone calls over four months. We had really positive reports among the participants at the end of the intervention; they found it useful and helpful.

We even found positive reports in the control arm as well. We think some of this is probably a reflection of the fact that there just is not a lot available for this population. To be offered help, and to identify that there’s a problem and that the VA is interested in trying to help support prostate cancer survivors was genuinely appreciated by all participants, even if they only received the nontailored newsletter.

What are the implications of this study?

Dr. Hawley: An intervention like this shows promise for helping improve symptoms over time if tailored to an area of focus that the patient desires to focus on. We would like to look at this in a bigger sample and match interventions, control and a choice of symptom, which we weren’t able to do in this study.

Interventions like this are very well received in prostate cancer survivors in the VA. Enrollment rates were good. Persistence with the intervention was good. Fidelity to the intervention was good. There’s a need for some kind of program for prostate cancer survivors to help them get through these debilitating symptoms.

There’s always further work to be done. We would love to continue to refine the intervention and then perhaps roll it out to some type of dissemination or implementation study to see if we could continue to see an improvement for these patients.

What do you think are the obstacles to implementing something like this across the entire Veterans Administration?

Dr. Hawley: The obstacles are the same for any system the size of the VA. It’s more of a technology system challenge, I think, which is always there for any health system. I think if it were solved, veterans would use it.

Do you have any final thoughts for patients about self-managing symptoms?

Dr. Hawley: Management of symptoms is possible. Self-management is one way to manage symptoms, and for some better than others. I encourage patients to keep having conversations with their providers if they’re not satisfied with the management that they experience.

Finally, I’d like to acknowledge the critical input of Dr. Ted Skolarus, Section Chief of Urology at the Ann Arbor VA. I would also like to acknowledge the study team in Ann Arbor, as well as the 4 study sites—the VA Ann Arbor Healthcare System, the St. Louis VA Medical Center John Cochran Division, the Louis Stokes VA Medical Center, and the VA Pittsburgh Healthcare System University Drive Division.

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A Spouse Offers Advice: Build a Strong Foundation

R.’s husband had prostate cancer surgery.

She spoke with Prostatepedia about their struggles with erectile dysfunction (ED) before and after surgery as well as her own advice for caregivers.

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How did your husband find out that he had prostate cancer?

R.: His primary care physician did a yearly PSA test. My husband’s father had had an aggressive form of prostate cancer in his mid-50s. He had radiation and did survive. She knew of the family history, so she ordered the PSA test. When it came back elevated, she referred him to a urologist who then did another PSA in his office. It was further elevated. The urologist wanted to do a biopsy. We were hesitant at first, but because of his father’s history, we decided to do it. About a week later, we found out about the cancer.

What was your reaction to the diagnosis?

R.: My husband J. was actually fairly calm. He said he figured he would get it eventually because of his father’s history. I was pretty calm about it too. I’m not even sure why. We had no idea how complicated prostate cancer can be. We were pretty innocent.

Did he have trouble with ED before prostate cancer?

R.: He did a little bit. We were older; J. was 69 when his cancer was diagnosed, so we already had some difficulty because of his age and blood pressure medication, but nothing major.

What kinds of prostate cancer treatment did he end up getting?

R.: He had a robot-assisted, nerve-sparing radical prostatectomy in April 2016.

Did you explore the idea of radiation or did you know right away that he wanted surgery?

R.: We did explore radiation. We saw two radiation oncologists and one surgeon. We were going to go with radiation at first. The radiation oncologist had J. fill out a self-evaluation form that asks about the man’s urination pattern.I questioned his answers because our bathroom is right next to the bedroom. The urologist had him fill out another one during a follow-up visit, and based on those results he ordered what he called a uroflow test.

We talked about it with the second radiation oncologist and realized that because he already had some issues with urinating, probably from prostate enlargement, that we would have to go through this entire rigmarole of a transurethral resection of the prostate and hormone treatments before he could begin radiation. Based on that discussion, we went back and chose surgery.

What kinds of conversations did you have about potential side effects after surgery? Did your doctor talk to you both about ED?

R.: They all did. The urologist did a good job of it. He went through each option and talked about the potential for ED with each. Then, when we talked with the surgeon, he was very emphatic about it based on my husband’s age and the fact that he had preexisting ED issues. He was really emphatic that we may come out on the other end with a lot of issues. We went in pretty prepared.

I had done a lot of research. J. had talked to a few men he knew. We knew from the get-go that his penis might be smaller, that he could have trouble getting an erection and maintaining one and so on. We talked about it and agreed that we would just deal with it.

Did they talk to you at all about things that he could do before the surgery? I know that some recommend a low dose of Viagra (sildenafil).

R.: The surgeon might have mentioned this; I truly can’t remember. My husband’s father had had a vision problem from taking Viagra (sildenafil), so we really didn’t want to do anything like that if we didn’t have to. I had been reading about Kegel exercises. I tried to talk to my husband about that for the incontinence, but then I learned that Kegels were good for ED. Other than the medication, the surgeon didn’t suggest anything.

Did you have a plan for rehabilitation after surgery?

R.: I have to be honest. That was the most frustrating part. Both the surgeon and the urologist said, “We’ll help you with ED afterward,” but we realized what they meant is, “We will write prescriptions for whatever you need” —Viagra (sildenfil), MUSE (alprostadil). After my research, we were more interested in a full penile rehabilitation program and neither one of them mentioned that. I don’t know if that’s universal or if it was just because we’re in a small town.

What kinds of problems did J. have after surgery?

R.: It was interesting. When the catheter was removed, my husband was eager to test the waters. We were able to have some form of intercourse. His penis was smaller and it wasn’t quite as firm as it had been before. It was enough to have intercourse, but afterward, there was a huge, huge amount of bleeding.

We contacted the surgeon and he said not to worry about it; that it was no big deal. He related it to the bladder and the urine. I just couldn’t seem to get him to understand. He said no limitations. Go ahead.

We did it again. And again, my husband had just a horrible amount of bleeding.

Finally, I was able to get the surgeon to understand that this was related to sexual activity. Then he said, even though he hadn’t heard of it before, he wasn’t concerned. He said to wait for about a week and see what happened. It did heal. It was somehow related to the tissues related to orgasm or erection.

That must have been frightening.

R.: It was. My husband is very sexual, so it was hard for me to say no to him. Let’s not do anything until we find out.

Was he in pain?

R.: No. Just the bleeding.

Did he use any ED treatments after that?

R.: It worked out on its own. In fact, when we talked to the surgeon about the bleeding, he asked if we had done anything like Viagra (sildenafil) because he had written a prescription for it. We didn’t. We didn’t have to try any of that. He did do the vacuum erection device to oxygenate the tissues so that they would have as much as they needed to heal. That was the only thing we used.

Was it effective?

R.: Yes. I’d read that after surgery the penis can be smaller. The vacuum erection device helped with expanding the girth. It was helpful in that way. It was encouraging for him because he could see this enlargement that he might not have seen without it.

We didn’t use it for intercourse, though.

What were your feelings while all this is going on?

R.: Most important was to make sure that I supported him and guided him through this.

One thing we experienced was a little bit unusual. When he came home from the hospital, the patch that holds the catheter tubing to the thigh completely came off. There was nothing holding the catheter tubing to the thigh. We were intensely concerned and worried about not having any tugging. Those first 12 days before the catheter was taken out we had to keep that together. We learned later that his thigh should’ve been shaved as part of pre-op, but it wasn’t.

I have a background in nursing from about 30 years ago, so we felt fairly comfortable with me helping with that. I also helped him shower. Then afterwards, he would lay down on the bed. I would apply patches that I bought from a nearby medical supplier.

It was a very intimate period of time. J. found it stimulating from a physical perspective. Every day I was touching him both in the showering and then in getting his catheter tubing patch put back on. We had an intimacy that we might not have had. He was really comfortable with me doing it.

You maintained intimacy and contact until sexual activity was possible again?

R.: Yes. It was a nerve-racking time for me because I was the one who had to be sure that we got the tubing attached. But it also had an intimacy—that he would trust me like that. It created this full experience that was beyond just having surgery.

That’s actually kind of wonderful.

R.: It was. I mean, I wouldn’t recommend it, but it definitely moved us into a whole different space.

You were comfortable talking to each other about potential problems with erectile dysfunction but what about discussing the issues with other people?

R.: We had no issue between us at all. We talked about it. We’re both really private people, so talking with anyone else initially was really just beyond anything I could think of doing.

But later, I did need that kind of support. When I researched prostate cancer, I found irreplaceable resources: Us TOO, International (an organization that is perfect because they are devoted to prostate cancer specifically), and from their site, I learned about Imerman Angels. They offer one-to-one support, not only for people with any kind of cancer, but also for spouses or caretakers. That was life-changing. I met a woman whose husband also had prostate cancer surgery. She got it. I could tell her about the bleeding. I could tell her about my worries about incontinence, especially during intercourse. She became a lifeline for me.

Was this email or phone support?

R.: It could be anything I wanted. I was more interested in doing email. She lived in another state but was in the same time zone. She was open and honest and I was open and honest. It was just a relief.

I’ve heard a lot about these bigger support groups, but it must have been good to have that one-on-one connection.

R.: It was. I think later, as I got more comfortable and as we moved through things, I would’ve enjoyed a women’s group. We live in a small community and there isn’t anything like that here.

I hope to eventually create a women’s group to give back.

My husband and I are also writing a book. Part of what I want to put in the book is an honest discussion about the intimacy issues we went through. It helped me to read other women’s stories. It makes me feel a little bit more courageous about sharing.

Many patients and their spouses get a lot out of hearing other’s stories. It makes you feel a little bit less alone.

R.: Exactly. We didn’t tell anybody in the beginning that he even had cancer, but when we did start talking about it, we found that people had a tendency to dismiss it. Oh, you’re lucky. It’s just prostate cancer. It’s a quick fix. Nobody talked about the intimacy issues, because that’s embarrassing. There was not only this wall of what we couldn’t talk about, but there was also the perception that prostate cancer was just no big deal. He could have his treatment and we would be done with it and should just move on.

That must’ve made it even worse: being worried and scared about something while this other person is reacting as if your fears are trivial.

R.: Exactly. Part of what I want to do is educate people about PSA testing after treatment. This testing lasts a lifetime. That it isn’t just over and done with.

Do you have any advice for men and their spouses?

R.: My greatest encouragement is to communicate openly with each other from the beginning— through the research, treatment and post-treatment. Perhaps start with something that isn’t quite as intimate as ED. I began with general research (basics of what a prostate is and what it does), then moved into the different treatment options and side effects. I sorted through everything (in books and online) and shared the information I anticipated he would want to know. We then covered specific topics in more depth together. By the time we got to ED, we were able to talk about it more easily. I’m the one who works a lot with the computer, so this was natural for us. I’ve always been the one to manage the medical records and medications, etc. I anticipate this might be the case with other couples.

You mentioned wanting to start a women’s group.

R.: Yes. I’m now ready to have a larger group to provide that kind of support. I’m trying to build up my courage a little bit to do it. I’ve done groups before with online journaling groups and then in-person journaling groups. To step out and organize a group for women is a bit daunting. I’ve had good support from Us TOO, International, both through their online women’s forum and directly from several women who facilitate groups, as well as the program director.

I think you’d be great at it, though. You’re so open and honest and calm.

R.: It took some time getting here. That’s why it feels so important to do this interview and write the book. We absolutely have to be able to talk about this.

At one point I was talking with my husband about Imerman Angels for men with prostate cancer and my husband said, “I don’t need support; I’ve got you.” I said, “That’s true. You do. But I don’t have anybody.”

I want to remind women that we need support too. A lot of it does fall on us: to do the research, to make sure they’re eating right, and that they’re doing all the things they need to do. We can wear out.

What was interesting is that before the surgery I thought, “It’s not going to be any big deal to me if he has ED. I’m concerned about him and his reaction, but I’ll be fine.” Then I realized after the surgery that it was more important to me than I thought. That we would lose that kind of intimacy and sharing. That was hard for me, too.

It’s an integral part of a marriage. If that disappears, then what happens to the marriage?

R.: This was truly an important topic, even though I’d thought it wouldn’t be. That’s where that communication comes in: talk about it from the beginning. Start with what’s less threatening. Then by the time you get to something that feels as big as ED, you’ve got this foundation built up.

That’s a discrete, logical way to approach it.

R.: Exactly. My husband is a contractor. He saw all this like building a house. It was all very structured and step-by-step. I learned to present things to him in his language. Not how do you feel about this, but what do you think about this? I’ve looked up this research. What do you think about it? I tried as much as possible to approach him more logically than emotionally because that’s how his mind works.

Would you suggest to men and their spouses that they see an ED specialist before they even have surgery as a way of preparing themselves?

R.: If their insurance covers it, I would go anywhere, do anything, visit with anybody, before you do anything. The more informed you are from more specialists, the better.

The more you know going into it, the better you’re equipped to deal with whatever happens after?

R.: Absolutely. It gives you confidence going in. We found out that the penis can become smaller after surgery by talking with some men that J. knew. We knew going in that that’s what we’d be dealing with. If we hadn’t known, we would have been stunned and lost.

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Brian M Talks About Dealing With ED

Brian M was diagnosed with prostate cancer in 2011.

He discusses with Prostatepedia his own struggles with erectile dysfunction after surgery and offers some thoughts for men in similar situations.

How did you find out that you had prostate cancer?

Brian M: I had my first biopsy, believe it or not, on September 11, 2001. I was in the waiting room when I saw the first tower come down. The second tower was struck obviously shortly thereafter. Sometime between when I saw the first tower go down and when I was laying on my side for the biopsy, my urologist who was performing the biopsy found out that his son, who worked at the World Trade Center, had been unexpectedly delayed and didn’t make it to work on time. Obviously, none of us knew what the hell was going on at the time, except that this terrible thing had happened. It was an interesting start to this whole process.

My family doctor must have seen my PSA rising, although I think back then it was still only three or four, something like that. I don’t remember the numbers. For whatever reason, my doctor sent me over to the urologist who said, “We probably ought to do a biopsy.” That biopsy was negative. All 12 cores. But I also had a very large prostate.

I was on Proscar (finasteride) for BPH for a number of years. I then switched to Avodart (dutasteride). I visited my urologist once a year. In 2011, I needed a refill. They said, “We can’t prescribe this. You need to come in.” They did my PSA and it turned out to be about 13. They said, “We’ve got to do another biopsy.”

I put that off. It was summertime and my daughter was getting married in November. I had a suspicion what was going on, so I said, “Let’s put it off until after my daughter’s wedding and then we’ll get the biopsy.”

Out of 12 cores, six had cancer. We now know it was probably on one side. I had suspected I had cancer, but that’s when I had discovered for sure. I had to make some decisions.

That particular urology group—and I don’t really mean this disrespectfully —is almost a wholesale urology. It’s the hugest group in the area and it’s a business. Of course, all medicine is a business these days. But I happened to go to a prostate cancer support group. One guy there said, “You might try this other urologist; he’s really good and takes a lot of time with you.”

That appealed to me because with this other group everything seemed a bit rushed. I made an appointment. The urologist was able to see me within a couple of days. He had a solo practice and was true to this fellow’s recommendation. He took a lot of time explaining everything and going through it with my wife and me.

We scheduled the surgery. I’m probably one of the last people to have an open prostatectomy because everybody is doing robotic surgery now. He was masterful. Everything went fine; the surgery itself went fine.

Did both urologists—the one in the large group practice and the solo practitioner —discuss side effects with you? What were those conversations like?

Brian M: To be fair to the large urology group, they gave me the diagnosis but we didn’t have that next conversation about scheduling surgery. It may well have been that they would have gone into more depth had we done that.

I just wasn’t impressed with that urologist. He just looked almost embarrassed to have to tell me about my cancer. I guess that’s never a great conversation to have with anyone.

The solo urologist was wonderful, though. My wife was there. I came with a pad full of questions. He answered them, did not mislead, did not promise any results that he couldn’t deliver—particularly, retrospectively. We felt really good about meeting with him. He didn’t pressure us. He said, “You’ve still got some time to think about it. Go talk to somebody else if you want.”

He didn’t rush you.

Brian M: He explained the possible side effects that I, even with all my so-called reading as a layman, didn’t realize. It was encouraging when he explained that even without an erection, one could have an orgasm. That was a little bit of a consolation.

He didn’t go into details about penile rehab: what is involved, what is the best way, etc. But this was six or seven years ago. I don’t know if it was discussed quite as much as it seems to be now in some of the online forums and blogs.

What was your experience with erectile dysfunction after surgery? Did your urologist give you any guidance about how to manage it?

Brian M: I don’t think he did. In a matter-of-fact way, we talked about Viagra (sildenafil). I don’t remember him saying use it or lose it, which is the big term now in penile rehab.

I know now that some doctors are even recommending that penile rehab start before surgery. For example, taking low-dose Cialis (tadalafil) or Viagra (sildenafil) before. I’m not sure exactly why. Certainly afterward, I think they’re combining masturbation with taking a low dose of either drug at night to keep the blood circulating. As informative and as willing to answer any questions as he was, I don’t recall him going into detail about that.

Did you feel comfortable talking to him about ED or were you still focused on getting your cancer under control?

Brian M: I certainly did feel comfortable. We went back every three months for my PSA and I’d get a prescription for Viagra (sildenafil).

The incontinence was minimal after the catheter came out. I still have a little bit. Stress incontinence is the main thing. I hear men talking about constant dribbling and whatnot, and luckily, I’ve never had that. I do have the stress incontinence, which has gotten better. Of course, during sexual activities—during ejaculation— for a while, I had to be careful to wear a condom because urine would come out. I seem to have gotten that under control, but that was certainly a side effect immediately afterward.

Pretty soon after that catheter came out, I began to take penile rehab seriously.

My wife and I would joke about it. Honey, it’s for medical purposes. She’s a good egg. It’s hard to believe I’m saying that, but we had fun with it. It’s obviously a laughable situation. Within a month, I was able to have an orgasm. It was painful. I remember thinking, “Have I done this too soon? Have I hurt myself?” The second time there was a little twinge of pain. After that, no more pain.

I did not have a teenage erection by any means, even with Viagra (sildenafil). But I was able to have orgasms.

For whatever reason, and I attribute it to the fact that I was extra sensitive after surgery, the orgasm was more incredible than before.

It was stunning. I was amazed. My wife said I had never reacted that way before. Maybe I was just so grateful that something was happening.

Did function just come back after that initial painful episode a month after surgery?

Brian M: Five months after the surgery, in August, we went on vacation. We had a great time. For whatever reason, on that vacation, I got a usable erection for the first time. It had been getting full and pleasurable, but that was the first time I could get an erection adequate for intercourse.

But did I ever get back to normal? Here’s how I compare it. I’m not sure that a woman can appreciate this; I’d be curious if other men have this same reaction.

Back in the day, you just started daydreaming or fantasizing and then you had an erection. I don’t know that I can get a spontaneous erection like that anymore, just from fantasizing. They say your brain is the number one sex organ anyway.

I said this to a new fellow at my support group last night: “No matter how much you tug at it, you’ve got to have some fantasy that makes you horny.” I’m not being very eloquent here.

There are two nerves that are necessary for erections. I refer to them as the “hydraulics.” If the surgeon must remove both nerves, then a man cannot have an erection naturally. He must use shots or have an implant. But if at least one nerve can be saved, then what is going on in the brain—the lustful thoughts— can transmit the signals to the hydraulic nerve that causes blood to flow into the penis and cause an erection. The nerves controlling orgasm—the pleasure nerves– are rarely damaged by the surgery.

If there are no erotic or arousing thoughts occurring in the brain, it is very difficult to achieve an erection just from pure physical manipulation. At least that’s my situation post-surgery.

Then again, I’m 66. Maybe it wouldn’t happen now anyway. That’s the other factor. How much of this is age-related? Would it be like this anyway without the surgery? I don’t know.

After the surgery, you took Viagra (sildenafil) at night?

Brian M: Almost every night. I would cut them into fourths. I bought them from Canada because they’re so much cheaper from Canadian pharmacies.

What role did your support group play while you were struggling with ED after surgery? Were you able to talk openly to the men in the group about your struggles?

Brian M: Some of what you’re asking just happened to come up in last night’s meeting. The group is starting to feel comfortable with each other. Even though we have new guys come in, the new guys are as scared as we were at first.

I made the comment last night that most women probably assume that men spend a lot of time talking about their genitals and their sex life, but we really don’t. It’s awkward. Of course, what is even more awkward are our feelings about what’s happening. We never talk about our feelings. Those fears about what it means to be a man are hard for guys to talk about. In the group, we seem to be breaking through in terms of what men are willing to say and ask.

I seem to be the one who always brings up the sex questions and issues. Maybe that’s because I keep thinking my days are numbered, so I want to get as much as I can. I don’t know why I’m so interested in it, but I am afraid of what the loss of sexual intimacy will mean.

One fellow last month was having terrible incontinence. We said, “Well, you’re only two months out. Hold on, hold on.” Last night he came in and said, “It dried up really well.” The new guy who was sitting across the way hadn’t even had the surgery yet, but could hear him say, “Most people get some form of erectile function back, even though there are obviously bad stories.”

It seems like a lot of guys come in absolutely bewildered. A couple other guys, like me, spend a lot of time on UsToo or Prostatepedia trying to get as much information as possible. More men come into the group without information than those who come in with information.

I think they’re getting a degree of a comfort level listening to us old-timers. I tell them don’t jump, don’t rush. You’ve got time to think about it. It always breaks the ice when we end up sheepishly laughing as we talk about how to rehabilitate your penis. It’s just the nature of the beast, I guess.

It’s like any other part of the body though. You wouldn’t feel weird talking about rehabilitating your knee after surgery.

Brian M: If you think about the visuals of that conversation, it’s not quite like any other part of the body. We’ve probably all been at a party or other social situation where someone was describing the rehab they were going through for a knee or hip replacement. And as you’re listening to them describe the exercises involved in their rehab, you’re probably visualizing what they were going through.

Now, picture that same conversation if a man were asked how he’s doing after prostate surgery: “So, Joe, they got you doing any rehab after your surgery?” Joe’s probably got to refill his drink at that point.

Outside of my support group, I can’t think of many opportunities to get into a discussion of one’s successes or failures at masturbation. But then, there are not usually a lot of cocktail conversations about hemorrhoid surgery either which is perfectly understandable. Again, just reinforcing the benefits of a support group, I guess.

Well, erectile dysfunction cuts to the chase of how you feel about who you are as a man or what it means to be a man.

Brian M: Yes, it does.

And that is different for each person. Besides, there’s a cultural idea of what that means.

Brian M: Right. And not all of it wonderful, actually. That may be part of it. Plenty of women out there probably say you’re always thinking about sex anyway.

My wife has been wonderful about it. We’ve always been innovative in having fun. She’s in that difficult position of wanting to reassure me that it’s okay and yet not wanting to act like it’s okay if I lose my ability or libido. I’m trying to figure out a way to make her feel like it’s okay to say it’s okay. I think that’s an issue for women: they want to say okay if you can’t perform. Well, we don’t want it to be okay that we can’t perform.

If it’s okay, then maybe it doesn’t matter to her.

Brian M: That’s the dilemma. We men fantasize that our women can’t stop thinking about our physical attributes and sexual prowess. (Note I said fantasize). We’d like to imagine they think about our genitals as much as we think about theirs. So there are mixed emotions when our wives say: “It’s ok, honey, I don’t need to have intercourse to feel satisfied.” They are trying to be supportive by suggesting our penises are not that important to them. That’s a difficult line to walk for them—and for us.

Do you have any advice for other men about dealing with ED?

Brian M: You’ve got to start talking about it. You’ve got to be prepared to feel embarrassed for a bit and then stop being embarrassed about it. How do you advise someone to take penile rehab seriously? You almost got to figure out a joking way to do it. You felt guilty about masturbation when you were a kid, but you don’t have to feel guilty about it anymore. In fact, it’s recommended medically for you.

Doctor’s orders.

Brian M: Doctor’s orders, that’s right. I do believe Use-it-or-lose-it is a real phenomenon. There’s just so much involved. It’s not just playing with yourself. You’ve got to somehow get your mind in a place where whatever those thoughts are that send the signal down those nerves. You’ve got to get your mind involved in a way that you’re not used to having to think about. Now you have to think about it: I have to go masturbate. If you want it to get erect, you need to have some thoughts that would cause that to happen.

What would you say to a man who says he feels like he has to put too much effort into it? That this just isn’t worth it?

Brian M: I’m not sure I understand. I can’t picture it not being worth it. When has an orgasm not been worth it? It’s an orgasm for God’s sake.

There may be a whole lot of other baggage involved. I have had periods, believe it or not, of anxiety or depression. I’m a lawyer. Back in the day when I was preparing for trial, I would get so focused and anxious. Sex was the last thing on my mind.

All those emotional things that play into it—if you’re on medication, if you have diabetes, if you have a heart condition. There are a lot of other things that enter into someone saying, “I’m not interested in sex at the moment.” But saying, “I just don’t care anymore?” I can’t relate to that.

Ask me next year when I’m on hormones. Maybe I’ll have a better answer for you.

You’ll remember what you once had. Maybe you would miss it.

Brian M: I’m hoping I remember it. I have read that everything is still sensitive and you can still have orgasms after being on hormones. What I keep saying to my wife is that she’s going to have to be the instigator. You won’t be desired. Apparently, I lose all of that. I’ll appreciate you, but I may not desire you. That’s not something I’m looking forward to— that change in roles.

I think you’re right. Many women are used to not being the instigator.

Brian M: I think women grow up being an object of desire— sometimes in a nice way and sometimes in a not nice way. Before you all go out, you pretty yourselves up. We don’t necessarily do that.

Frankly, I never even thought about all this until I started dealing with what it might be like to not have a libido. From what I’m reading, those emotions are just not there. I’m scared of it happening. I want her to understand that it might be a difference for her, too. When she walks out of the shower, I may not care.

If you talk about it openly and have a plan for having to deal with it, then it won’t be as much of an issue.

Brian M: That’s what we’re trying to do. I’m trying to forward her the articles I’m reading.

Does she read them?

Brian M: I think she does. She doesn’t necessarily say, “I read the one you sent this morning,” but we talk about it. Right now she doesn’t want me to worry. We have time to worry.

I’m surprised how much of what we just talked about also came up in my support group last night. For some reason, we really opened up and started talking about our feelings more than we had before.

There was a period when I was not going regularly. But I find myself wanting to go regularly now for two reasons. One, as things are starting to happen to me I get some insights from other people.

Also, some men have been coming for 10 years. They’re just giving back now. I think I ought to do that, too. Even if I don’t need to be there for my own personal reasons, inevitably, there’s a new guy who’s just got this look on his face. It is a good feeling to be able to help fill in the gaps for him without trying to scare him, but by being realistic.

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Cancer and Finances Don’t Mix, but There is Hope: Jamie Bearse

Mr. Jamie Bearse is the President and CEO of ZERO — The End of Prostate Cancer (www.zerocancer. org). ZERO is a United States-based nonprofit with a mission to end prostate cancer.

Mr. Bearse talks to us about prostate cancer and finances.

It’s frightening to hear that you have cancer. A prostate cancer diagnosis can be devastating physically, mentally, emotionally, and financially. Coping with a shocking diagnosis is only made more complicated by having to make important decisions and coping with the costs that come with those decisions.

Stress and anxiety over fighting prostate cancer and choosing the best treatment pathway are complicated enough. Many patients also struggle to meet the financial burden that comes with cancer. Out-of-pocket costs to fight cancer are a significant barrier to survival as studies show that cancer patients are two-and-a-half-times more likely to declare bankruptcy than those without cancer. In addition, one out of three patients turns to family and friends for financial support during their cancer journey. These economic struggles can cause treatment nonadherence and lifestyle changes that can worsen a patient’s outcome.

I frequently hear from patients about their financial struggles in their prostate cancer journey. There are countless stories about men dropping off treatment to keep their family’s financial future secure or families moving into campgrounds because they lost a home to the financial burden of fighting cancer. But enough is enough. We’re taking action.

We created ZERO360 a free, one-on-one comprehensive patient support program designed to help men find financial aid and other resources that best fit their individual needs. ZERO360 is a patient navigation program that connects patients with trained case managers who can help them find copay and other financial assistance to address medical debt and other costs incurred during treatment. This can include free or reduced treatment access, financial support for treatments through copayment, coinsurance, premium or deductible assistance programs, insurance navigation and benefit help, as well as resources for cost-of-living support among other assistance on a case-by-case basis.

ZERO360 helps the men who need it the most. Over the last 18 months, more than 830 men have benefited from the program, with more than $570,000 in financial relief secured for patients. From the newly diagnosed to men who have been battling their disease for years—many are Stage IV patients on a combination of expensive therapies—this is the type of comprehensive support that men need. Whether they need help understanding coverage options, finding sources of financial aid, or resolving issues with private insurance, ZERO360 case managers are trained professionals who are experts in addressing needs and identifying resources for men.

In addition to ZERO’s comprehensive program, additional resources are available to help men access their prescribed treatment as well as pay for any ancillary expenses. Programs that help with prescribed medications include patient assistance (free drug) programs that provide free product for uninsured and underinsured patients; charitable copay assistance program that provide assistance to federally and commercially-insured patients; and manufacturer copay cards that provide assistance to commercially insured patients. There are also organizations that often have funds available for copay assistance, treatment, transportation, and other ancillary expenses. You can find a full list of available resources on our website at http://www.zerocancer.org/ financial-resources.

When considering treatment and the cost of care, it’s important to learn as much as possible about treatment costs, insurance options, and other treatment-related expenses. No matter where a man is on his prostate cancer journey, there are resources available to help. Call 844- 244-1309 (toll-free) to get started with ZERO360.

You never have to fight prostate cancer alone; we’re here for you, every step of the way.

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Clinical Trial: Sex After Stereotactic Ablative Body Radiotherapy

Dr. Neil Desai, an Assistant Professor of radiation oncology at the University of Texas Southwestern Medical Center, specializes in treating genitourinary cancers.

Prostatepedia with him about his clinical trial looking at erectile dysfunction in men after nerve sparing stereotactic ablative body radiotherapy (SABR) for localized prostate cancer.

What is the thinking behind your clinical trial?

Dr. Desai: The focus on sexual dysfunction after treatment for prostate cancer is not a new one. We have gotten better about cure rates, risk classification schemes using genomics and other clinical factors, and about managing urinary and rectal side effects.

Sexual dysfunction after treatment, however, remains a common reality that we force men to accept with preparation that is never sufficient. It’s an especially mean kind of change when you’re talking about men who are at the point of their lives where they’re becoming able again to focus on themselves— maybe the kids are out of the house and they’re in their last five to 10 years of potency. Then you take that away from them.

This glaring deficiency in progress and a nihilism about ways to address it seemed to my collaborators and me to contrast against large strides in imaging, treatment precision of radiotherapy, and understanding of the key anatomy mediating sexual dysfunction after radiation.

In particular, there is apparent synergy from improved localization of clinically significant disease within the prostate gland by MRI, ability to deliver radiation with precision in the millimeter range, and introduction of a rectal spacer gel that allows freedom to focus on sparing other nearby anatomy like vessels and nerves involved in sexual function. Armed with these complementary advances, we aimed to try again to tackle the problem of sexual dysfunction.

Thus, we can’t really say this is a novel idea. We simply believe we are at an inflection point where technology has shifted just enough where we can look back at a good question from 10 years ago but with better technology and understanding to maybe make more of a difference.

What can a man expect to happen in your trial?

Dr. Desai: Before entering the trial, we critically interrogate a man’s disease and sexual function to make sure we can safely and meaningfully offer them a potential benefit for enrolling. The main question is do they have a disease that’s amenable to a dose de-escalation design? Can we at least de-escalate the intensity of treatment on at least one side of the prostate in an effort to spare the nerve bundles there, as well as some critical vessels that may relate to sexual function—or is their disease too close to be safe? Did the rectal spacer gel insertion adequately displace the rectum to allow us the luxury to consider de-escalating a neurovascular bundle and other vessels opposite to a man’s dominant disease?

Once satisfied, these requirements are met, the man is randomized to either standard SABR, or an SABR technique that will de-escalate the dose to the side of the prostate opposite dominant disease and next to a neurovascular bundle. As there may yet be clinically indolent disease below the MRI threshold of detection in this region, we are still treating the prostate in this area to a minimum dose we feel can still address such lower grade disease.

The dose de-escalation technique will be used in half the patients, and they will not know which arm they are in (blinding), in order to preserve the integrity of the assessment of whether this technique actually reduces sexual dysfunction.

Men will then be followed per standard follow-up at regular intervals with PSA testing, exam and quality of life questionnaires assessing changes in sexual function and medication requirement.

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Dr. Mohit Khera: Treating ED

Dr. Khera, a urologist specializing in male infertility, male and female sexual dysfunction, and declining testosterone levels in aging men, is the Director of the Laboratory for Andrology Research and the Medical Director of the Executive Health Program at Baylor College of Medicine in Houston, Texas.

Prostatepedia spoke with him recently about current and emerging approaches to erectile dysfunction (ED) after prostate cancer.

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Why did you become a doctor?

Dr. Mohit Khera: Originally, I was a healthcare analyst. I did my MBA and then worked as an analyst in Boston for two years. I realized that it wasn’t very satisfying for me. I really wanted to be able to help other people and to help patients. I went to medical school and became a doctor. I have never looked back. It’s the best decision I ever made.

There’s something very gratifying about being able to help other people, particularly those who are in need and are in pain or hurting.

Have there been any particular patients who’ve changed how you see your role as a doctor or how you view the art of medicine?

Dr. Khera: There are numerous patients who stand out in my mind, particularly those who have suffered from prostate cancer and are trying to recover their lives, whether it be in terms of sexual function, incontinence, or even just keeping the cancer from coming back. It’s very challenging. These patients just

who is not very skilled or who does not do robotic prostatectomy quite frequently, their ED rates tend to be higher than someone who does the procedure on a regular basis. Surgeon skill is critical.

Typically, radiation does have a lower rate of ED initially, but several years down the road, the rate of ED can catch up and accelerates past the rate of ED from surgery.

We know that in androgen deprivation therapy (ADT) when you drop testosterone values, the risk for ED is significantly increased. Many studies show that you start losing nocturnal erections when the testosterone levels fall below 200. That’s exactly what happens when you give men ADT: ED rates should go up significantly.

Does erectile function come back after a man goes off ADT?

Mr. Khera: Yes, many times it does come back. The only problem is that not all men have their testosterone levels bounce back into the normal range after they stop ADT. Some men will actually have testosterone levels that remain in the low range. Of those men in whom levels do go up, whether they build up naturally or through testosterone supplementation, many will experience improvements in their erectile function once again.

Is there anything a man can do before treatment to prevent problems or reduce problems after treatment?

Dr. Khera: The concept of penile rehabilitation has been up for debate in my field. There are those who are proponents and those who don’t believe that it will help. I personally believe that penile rehabilitation is effective and will help patients recover their erectile function faster and more effectively.

In my program at Baylor College of Medicine, I start patients two weeks prior to the surgery on daily Cialis (tadalafil). I teach them how to use the vacuum erection device as well because I want them to use it after surgery. I check their testosterone levels before surgery, as some studies have shown that the testosterone levels do go up after a prostatectomy.

I also teach them the concept of penile injections just in case they need to use them after surgery if they’re not able to recover their erectile function.

There is a lot of counseling that goes on before the surgery. I put them on certain medications. I’m trying to prepare them for the surgery and to keep their tissue healthy and in the best condition possible.

There are a lot of doctors, though, who don’t do that kind of thing and who don’t talk about penile rehabilitation. Some aren’t even comfortable talking about ED with their patients except in the most cursory way. What would you say to a patient who’s encountered that? Should he go see someone who is a specialist in ED?

Dr. Khera: I think that patients should voice their opinions. If you look at this field 20 years ago, you realize there are three things that occur. A man wants to make sure that he gets his cancer out; he wants to make sure he can still get good erections; he wants to make sure that he’s not leaking urine after the procedure. Those are the three big categories of patient concerns.

In the past, many surgeons just focused on getting the cancer out and felt patients should be grateful for that. Yes, you may have some ED or incontinence, but we saved your life.

But now patients are very savvy and are demanding more. They’re demanding that they should have their cancer out and also have great erections and no incontinence after the procedure.

I think it’s very important when a patient has a diagnosis of prostate cancer that he discuss all three of these categories with his surgeon. They should discuss outcomes and the surgeon’s skill. They should discuss how many cases that surgeon has performed in this field.

Some patients in smaller communities don’t have access to doctors with your experience. Are there online resources for men in that position?

Dr. Khera: I think one of the best online resources is at http://www.sexhealthmatters.org. They have a phenomenal website with lots of literature and education on sexual medicine and rehabilitation. It’s an excellent resource that I share with my patients.

What about men who have already been through treatment and are suffering from ED? Which approaches seem to be most effective after which prostate cancer treatments?

Dr. Khera: There are many treatment options available to men with ED following a radical prostatectomy. The most common treatment options are PDE5 inhibitors. Those are called phosphodiesterase inhibitors—Viagra (sildenafil), Levitra (vardenafil), Cialis (tadalafil), and Stendra (avanafil).

These medications are very useful. Many of us give these medications on a daily basis to help men recover the nerves and penile tissue. I think it’s important.

Men can also use a vacuum erection device, which is exactly what it sounds like. It’s a vacuum that induces an erection. A band is placed at the base of the penis to maintain the erection.

Men can also use an injection therapy. We spend an hour in the office teaching them how to inject themselves with a very small diabetic needle. They inject into the base of the penis a solution that causes a very rigid erection. Then very early on they can start engaging in sexual activity.

I believe psychologically it’s very important that men start engaging in sexual activity early after surgery; it has a large psychological impact not only on the patient but also on the partner.

Other therapies include urethral suppositories called MUSE (alprostadil). These are placed into the urethra and dilate the penile tissue to give an erection.

Finally, I would say one of the best treatment options for many men is a penile prosthesis. We do perform this procedure. We place a penile implant into the penile tissue and a pump into the scrotum. Men can then pump saline into their penile tissue to induce an erection.

Isn’t it dangerous for a man to begin sexual activity soon after surgery? Is there any risk to him?

Dr. Khera: Typically in our practice, we like men to wait at least one month so that all the sutures heal and there is no risk of injury with the urethral anastomosis. We encourage men to start engaging in sexual activity one month after surgery.

Do you have any advice for men who are either worried about ED before going into treatment or who are struggling now?

Dr. Khera: There are two important things men should realize. First, prior to going into any type of treatment for prostate cancer, you should discuss ED outcomes with your doctor. Ask them what success have they had with ED. What is their plan for managing the ED if it does develop after the procedure?

Second, men who are already suffering from ED should know that there are excellent treatment options available. Men do not have to live with ED following a radical prostatectomy.

There are new treatment options emerging. We have started two studies, one with stem cell therapy. We take stem cells from men and inject them back into the penile tissue, with some benefit. We have another therapy called low-intensity shock wave therapy, in which we deliver shocks to the penile tissue. It does help recover erectile function.

There are many new treatment options on the horizon.

We’ve spoken about stem cell therapy before. I think you were just starting a trial.

Dr. Khera: I finished that trial and am now starting a Phase II trial. This first trial went extremely well. We’ll begin recruiting patients at the end of this year.

What we did not discuss last time was shock wave therapy. That has been out for multiple years and has gained a lot of success and media in the United States. Some of your readers may have seen commercials for it. We believe at this point that shock wave therapy should be used only in a research protocol until more data is available.

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Dr. Arthur Burnett On Erectile Dysfunction + Cancer Treatment

Dr. Arthur Burnett is the Director of both the Basic Science Laboratory in Neurourology and the Sexual Medicine Fellowship Program at Johns Hopkins University in Baltimore, Maryland.

Prostatepedia spoke with him about erectile dysfunction (ED) and prostate cancer treatments.

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Why did you become a doctor?

Dr. Arthur Burnett: I was inspired by seeing other individuals through either the media or just personal contacts who were physicians at the time. I was a young man, perhaps in my teenage years, when I was inspired by the impact the profession allowed a physician to have on people’s lives. I sensed that I had a talent for that sort of thing and certainly had an aptitude for science and medicine as the years went on. That was the groundwork for my continuing on to do the appropriate academic training to become a physician.

Have you ever had any particular patients whose cases changed how you see yourself as a doctor or how you approach the art of medicine?

Dr. Burnett: I think patients, in general, have been reinforcing in many respects. There are certainly patients whose case stories inspire you by their humanness and just by the fact that they connect with you as a person and show compassion and caring themselves. That is what has been inspirational about being a physician.

How common is ED after prostate cancer?

Dr. Burnett: Prostate cancer in and of itself is not necessarily connected with ED; it’s more the treatments unless the cancer really is at a more advanced stage. Advanced prostate cancer can have either local effects because of cancer progression on structures of the pelvis or systemic effects—that is, it progresses and then weakens the person’s body.

Treatments that reflect either local treatments or more systemic, or body-wide, treatments can have a negative impact on one’s sexual function, including erectile physiology or erectile functions. Local treatments include surgery and radiation as conventional interventions. More systemic therapies include various kinds of hormone suppressive agents, or even chemotherapies, that can adversely affect the physiology of the erection and impact how nerves, blood vessels, and hormones interact to bring about an erection response.

Are there any steps a man can take before he starts treatment that might help prevent problems after?

Dr. Burnett: I certainly believe that’s so. I think patients need to be informed about the factors that can adversely affect erectile function. I think patients assume all too often that the physician is responsible for their best health. But patients also need to recognize that their best health status is also key to retaining function in the face of any treatments we can bring.

Being healthier and physically fit— not out of shape, not overweight, not a cigarette smoker—can increase your likelihood of preserving better health in the face of our treatments. Those patients who do not observe these kinds of health habits are setting themselves up to have less reserve function in the face of our treatments.

Not just in terms of ED, but in terms of general recovery?

Dr. Burnett: Absolutely. Even more specifically, because we’re talking about erectile function, those patients who are out of shape, who are smokers, who have adverse health conditions that they may not have control over, are not helping themselves with regard to their erection function as well as to their overall body health.

What could you say to a man who brings up the subject of ED with his doctor and finds that the conversation isn’t as in-depth as he would like? What do you suggest he do? See another doctor? See a specialist in ED?

Dr. Burnett: I think that’s an all-too-often scenario, that sometimes the care provider is neglectful about some of the basic aspects of a person’s health status. As the care provider himself is certainly attentive to his own sexual function, he should be aware of that for the patient. All too often, that’s not done. My advice would be to tell the patient that he should go ahead and be assertive or proactive about asking about these sorts of things and really inquire.

An informed patient, perhaps with this kind of communication I’m sharing, will be empowered to communicate that this is important to him. While he is seeking the best intervention for his cancer management, all aspects need to be put on the table for discussion. Ask that care provider to help address these things. If that care provider is not able to address it, ask him who else can be of service, as part of the care team perhaps, to address these problems or potential problems as they may arise expectedly with interventions.

What treatments are available for men suffering from ED after prostate cancer treatment? Are there some treatments that are more effective after surgery or radiation or hormonal therapy?

Dr. Burnett: We have a host of treatments that are available and can be offered for managing ED in this scenario, as much as for any presentation of ED in our modern times. We’re certainly much better in terms of what we can offer medically than where we were a generation ago, but we still have interventions that largely are addressing the symptom presentation of erection dysfunction; they don’t necessarily correct the erection disorders. They treat the symptomatic presentation of a man saying, “I cannot get an erection, and what do you have to offer?” These interventions, more or less, are used on demand to help him achieve an erection response when needed.

These therapies range from the oral medications that are very effective and are FDA approved, to semi-intrusive interventions brought to the genital area in the form of penile injection therapy or vacuum erection device therapy. We also have penile prosthesis surgery, which obviously is much more invasive. Some patients either prefer this approach or they find that the other options are just ineffective or contraindicated.

We have to understand the patient’s case, his preferences, and the severity of his ED. Certain men who’ve had prostate cancer treatments may have more severe erection dysfunction and may not respond well to oral therapies such as Viagra (sildenafil) and Cialis (tadalafil). That patient may be inclined to move forward with some of these somewhat more intrusive, or even invasive, surgical options if needed.

Do you have any advice for men who either are worried about ED before treatment or who are already suffering from ED after treatment?

Dr. Burnett: The sobering truth is that some of the interventions for managing prostate cancer can have adverse effects on your sexual function. At the same time, understand that we have interventions to address ED. Fear of losing one’s erections hopefully should not lead one to avoid proper treatment.

As one patient quipped to me once in the past: “The ultimate form of ED is death.” Not addressing your cancer and not being around for your loved ones is certainly not the best option to pursue. You have to be attentive to addressing your disease but also recognize that we can address your ED or other sexual dysfunctions. Know that these interventions can be sought amidst the treatment for the prostate cancer.

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Erectile Dysfunction + Cancer

Dr. David Houchens introduces this month’s conversations about erectile dysfunction for prostate cancer.

I have 35 years of experience in preclinical and clinical cancer research. I started having PSA tests done when they first became available and noted that my PSA was going up over time. Ultimately, I had a biopsy in 2001 that was positive for prostate cancer with a Gleason score of 7 (3+4) and with positive margins. The gold standard for treatment at that time was to have a nerve-sparing prostatectomy. Mine was an open surgery because robotic surgery was not readily available in 2001. After a number of months, my PSA did not go to nondetectable, and it started a slow but steady rise. With the treatment guidance of Dr. Charles “Snuffy” Myers, the PSA rise was slowed significantly and held in check for three years. After that time, a steady rise led to a year of androgen deprivation therapy (ADT). As expected, the PSA became nondetectable; however, nine months after going off ADT, when my testosterone started rising again, so did my PSA. The newer scans available in the US today were not available in 2008, so I flew to the Netherlands for a Combidex scan to locate possible areas of spread. One distant node area was found that was suspicious. Back in the US, I had salvage radiation plus ADT. In addition to the usual treatment of the prostate bed and surrounding area, the suspicious area plus some areas found with color Doppler ultrasound were also radiated. Since that time nine years ago, my PSA has remained nondetectable and, of course, I will continue to have regular PSA checks throughout my life. My wife has been a very supportive caregiver and has participated in my decisions and treatments. She and I have been active in support groups and in leading discussions on intimacy at support groups and conferences.

The conversations in this month’s issue of Prostatepedia point out the problems that many men have with side effects after their treatment for prostate cancer. Although most urologists and radiologists mention the possibility of incontinence and erectile dysfunction (ED), the usual statements indicate that those issues are probably transient and clear up over time. Some follow-up programs include penile rehabilitation but this is usually only available in large academic centers and thus not accessible to a large number of the cases throughout the country. At the time of prostate cancer diagnosis, most men focus on combating the cancer and assume that they can manage any side effects. It is only later that they realize some of those effects have become a life-long matter.

In this issue of Prostatepedia, Drs. Khera, Burnett, and Kaplan give clear summaries of the approaches that can be used to treat ED after surgery or radiation. One thing most men do not realize is that ED can be the result of conditions other than treatment for prostate cancer. These include diabetes, heart condition, blood pressure issues, obesity, and age. These comorbidities need to be considered in treatment. If men have some degree of ED prior to prostate cancer treatment, recovery will not lead to fewer effects of ED than the patient had before treatment. There are suggestions in the conversations of what should be discussed with your doctor prior to prostate cancer treatment, and these should include addressing side effects as well as experience with the selected therapy. As with any medical or surgical treatment, if you do not feel comfortable with your physician, you may want to consider finding one who can address your questions comfortably and has the expertise and experience to give excellent care for your condition.

Also in this issue is a conversation with a patient, Brian M. He gives a clear description of what he went through on his prostate cancer journey including penile rehabilitation and therapy for ED. Much of what he experienced is seen by a number of men facing this diagnosis, although each case has its own issues, and there are not necessarily common factors for each man. He points out the advantage of having a spouse or partner go with you to medical appointments since the questions and answers heard by the caregiver can sometimes be different from those heard by the patient. He also found his participation in a local support group to be helpful.

An important conversation in the issue is with a caregiver, R. She describes what she and her husband went through with ED after his treatment. Since prostate cancer has been described as “a couple’s disease” due to the effects on intimacy, it is important for the man and his partner to be fully aware of what to expect with the side effects from, not only the surgery or radiation but also the longer-term effects that may exist especially with additional therapy such as ADT or chemotherapy. The selection of a doctor should not be based solely on expertise with the primary treatment but also their knowledge and ability to discuss and manage side effects.

In most cases, there is not a critical need to have treatment immediately, so there is time to study and read information on the disease and to talk to others who have or are going through treatment. For those with high-grade, more aggressive cancer, treatment may be necessary more quickly. In those cases, a medical oncologist who specializes in prostate cancer should be brought on the team.

Here are some points to consider when addressing your next steps after a diagnosis of prostate cancer:

• Ask for copies of all medical records (such as lab tests, scans, and treatment notes) and keep those in a file or binder.
• Take a spouse/partner with you to medical appointments.
• Make a list of questions to ask when meeting with the doctor or medical team.
• Talk to the doctor or medical team about any side effects you are having related to procedures or medications.
• Ask clear questions about what to expect regarding ED and incontinence, including what treatments are suggested or used to reduce the effects or to aid in correcting the problems. If you do not feel comfortable with the responses or the fact that the physician does not consider these as something to worry about, you may want to consider a second opinion or different doctor.
• Attend a support group if there is one in your geographic area. If not, participate in a phone support group.

Here are some suggested resources for support:

• Visit Us TOO [http://www.ustoo.org/] to find a support group. Each state is listed with information on meeting time, place, and contact person.
• If you are not near a local support group, the link to a nationwide phone support group is https:// http://www.ancan.org/support-calls. There are calls specifically for early-stage and more advanced-stage prostate cancer and a separate call-in for caregivers.
• Us TOO International-Prostate Cancer Support and Education has a private women-only Facebook page called “A Forum for Her.” Women can join by contacting TerriL@ustoo.org.

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Talking About Erectile Dysfunction

In September, we’re talking about erectile dysfunction after prostate cancer treatment.

Many men with prostate cancer have concerns about the potential impact of treatment on their sexual function, whether they voice those thoughts or not. This isn’t vanity: sexual function—or the loss of it —can cut to the heart of what it means to be a man for many. Who am I if I can’t function as I have always have? What does it mean for my marriage—or if I’m not married, my ability to attract a partner? Or more fundamentally: what does it really mean to be a man?

This is why each year, Prostatepedia dedicates an issue to discussing erectile dysfunction with prostate cancer experts, men with prostate cancer, and patients’ partners. The treatment options don’t really change much from year to year, but the openness with which men and their significant others talk about these issues is in evolution—or rather: revolution. More doctors are also talking about steps men can take before and after treatment to help function return at a faster clip. Pay particular attention to the advice our experts give this month.

For the first time, our Guest Commentary features a patient who also happens to be a former cancer researcher and an active member of his local UsTOO support group. Dr. David Houchens offers his thoughts on dealing with erectile dysfunction after prostate cancer and offers some valuable resources you may want to review.

Drs. Arthur Burnett and Mohit Khera each help us put erectile dysfunction after prostate cancer into context. They offer insight into which treatments might be effective and outline the pros and cons of each.

Dr. Irving Kaplan talks to us about erectile dysfunction after radiation

Dr. Neil Desai talks about his clinical trial on sex after stereotactic ablative body radiotherapy.

Dr. Sarah Hawley discusses her work on self-managing side effects like erectile dysfunction in prostate cancer patients within the Veterans Administration.

Mr. Jamie Bearse of Zero – The End To Prostate Cancer talks about the financial impact a prostate cancer diagnosis can have.

Brian M discusses his own struggles with ED after treatment and the impact it had on his marriage.

Finally, R. gives us a spouse’s perspective and offers her own advice for caregivers.

It used to be that both patient and doctor were uncomfortable even bringing up erectile dysfunction after cancer. Shouldn’t I just be grateful that I’m alive, many would think. Certainly, this is still true for some— but as with many things in our world, things are changing.

The bottom line is that if you are struggling, no one can help you if you don’t talk about what’s happening first: with your partner, with your friends, and most importantly with your doctor.

Silence is a dead end.

Read this month’s conversations about erectile dysfunction after treatment.