Living With Erectile Dysfunction After Prostate Cancer

Steve A. talked with Prostatepedia about his experience with erectile dysfunction (ED) after surgery and radiation for his Gleason 9 prostate cancer.

What was your life like before you had prostate cancer?

Steve A: A hell of a lot better than it is now. I think about and read about prostate cancer daily. I have no symptoms. Never have had any. But I work hard to combat the side effects of treatment and forestall recurrence. Eat right, exercise daily, and try to help others with prostate cancer.

I’m retired. I was a senior executive at a Fortune 10 company. I retired early back in 1998 and moved part-time to a resort community. I played a lot of golf and worked in community projects, including community government, and started a real estate development business.

I moved here full-time in 2001 and noticed that I had a problem with urination frequency. I saw a urologist who determined that I had benign prostatic hyperplasia (BPH) and put me on Avodart (dutasteride).

Then my prescription drug plan dropped Avodart (dutasteride), so I switched to Proscar (finasteride). Later my urologist added Flomax (tamsulosin) to shrink my prostate. I was on Proscar (finasteride) and Flomax (tamsulosin) continuously until 2013. They controlled my BPH pretty well but impacted my sexual performance. My sex life was not as good as it was before that as a result. I had mild ED.

Did you go on any medication for the ED at that point—like Viagra (sildenafil) or Cialis (tadalafil)?

Steve A: I tried them. They worked.

When and how did you find out you had prostate cancer?

Steve A: I had been getting annual PSA tests since age 40 as part of annual company physical exams. The PSA was around 0.4 for years, then increased gradually as I aged. But it was never considered a problem since it was well below the magic 4.0 considered “normal.”

Then, in 2013, my PSA suddenly doubled to 5.4 from 2.7 in 2012. I had it checked again and this time it went up to 6.6 in only a few months. So my GP, who recognized that PSA velocity (doubling time) was an indicator of a potential problem, recommended a biopsy. I found out that finasteride cuts PSA roughly in half, so my PSA was actually 13.2. This shocked me. Should I have had a biopsy years earlier? Could I have cured my cancer if I’d found it earlier?

So you had a biopsy?

Steve A: I got a biopsy from my local urologist. The Proscar (finasteride) had reduced my prostate size quite a bit, so I only needed to have six cores taken. It was painless. Pathology found 40% prostate cancer in one core and 10% in another core. The others were clean. My Gleason score was 4+4=8. I had a second opinion done by prostate cancer doctor Jonathan Epstein at Johns Hopkins; he upgraded my Gleason score to 4+5=9.

My urologist talked about what I should do. Was I a candidate for active surveillance? He didn’t think so. Turns out that was a huge understatement!

He said I was a candidate for either radiation or surgery due to my age (69 then) and otherwise good health.

So I saw a couple of radiation oncologists and a couple of surgeons. In addition to seeking a cure, I was concerned about three things: ED, hormone therapy, and dragging out the treatment process. I’m the kind of person who likes to get stuff done my part. I now question my decision to have surgery since the cancer had already escaped the prostate. Should the urologists or I have known that?

When you met with these different surgeons and radiation oncologists, did any of them speak to you about ED after treatment?

Steve A: I asked both surgeons if they could do nerve-sparing surgery because I was concerned about my sex life after treatment. The local surgeon said, “No, I wouldn’t try it. With Gleason 9, I’ve got to go pretty wide on the margins to ensure I get it all. I can’t promise that at all.” He was totally unconcerned about ED. I didn’t like his bedside manner!

When I spoke to Dr. Epstein he said he would do nerve-sparing surgery and gave me printed handouts which addressed all facets of what I could expect post-op, including incontinence, ED, etc. I liked his can-do attitude and was impressed with his credentials and Johns Hopkins’s reputation in the field of urology.

What about the radiation oncologists?

Steve A: I don’t remember them saying anything about ED. But they both agreed that hormonal therapy would be necessary before and after radiation therapy. That turned me off completely. I had read about the side effects of hormonal therapy and wanted no part of it. However, in addition to talking to people, I do a lot of reading. I read that you’re going to have ED with surgery, but that it’ll go away after a year or maybe two. ED with radiation comes later on.

I decided I’d rather have ED up front and get it over with than have it come two or three years later. So I went with surgery.

What happened after the surgery?

Steve A: The day before surgery, the doctor changed his mind and suggested that I have open surgery rather than robotic. He wanted to be able to feel the tumor, margins, and lymph nodes to determine which to resect. I was a bit concerned about recovery from open surgery, but he convinced me it would be no worse than robotic.

He resected about 10 lymph nodes and found nothing there. Pathology ended up very poor: positive margin at the base, seminal vesicle invasion, and extracapsular extension. It was serious because it had already escaped the prostate. I was downgraded from stage pT1c to stage pT3b.

When the surgeon came in to talk to me about my prognosis, he was not happy and said, “You’re going to be fighting this for the rest of your life.” Turns out I was one of the 10% with a high-risk case. I asked him how long I had to live. He said I’d still be alive in 10 years and sent me a nomogram that scored each of my risk factors in terms of life expectancy. I hope he was right!

So obviously, I had ED after surgery. I had incontinence for a while too, but it was mild. I wore one pad a day for 13 weeks, but haven’t had much of a problem since. I had no complications from surgery. My wife and I flew to Baltimore. She stayed in my recovery room. We flew back home three days later. The catheter and stitches were removed by my local urologist 10 days later. I was playing golf three weeks after the surgery. I’ve been unable to have any sex ever since. But subsequent radiation treatments are probably the main cause of my ED now. I’ve been fried.

Were you able to talk to your doctor about it?

Steve A: Yes. He said you have to use it or lose it. Then I had recurrence (rising PSA) so I no longer conferred with my surgeon. Only six months after surgery, my PSA started going back up again. I needed hormone therapy and radiation after all! In mid- 2014, I had 38 fractions of salvage radiation therapy (SRT). I was also on Lupron (leuprolide) for six months. That completely destroys your libido anyway. I didn’t even have any desire for sex.

Were you more worried about the recurrence than any ED?

Steve A: Absolutely. When you have Gleason 9 with my poor post-op pathology, survival—not sex—is all that matters.

I’ve had recurrence twice since SRT: in two pelvic lymph nodes in 2015 and in my right femur in 2017. In 2015, I went down to Florida to have 50 fractions of intensity-modulated radiation therapy (IMRT) to all my pelvic lymph nodes and was on Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride) for 13 months. Just a month ago, after stopping hormonal therapy, they found a lesion on my upper right femur. I’m now back on hormonal therapy and had stereotactic body radiation therapy (SBRT) in three fractions locally to my femur. I’m also on Xgeva (denosumab) for bone mets.

So far, no cancer has been found in my prostate bed, lymph nodes, or other soft tissue or organs. In that sense, I guess I’m lucky.

I’ve completely forgotten about the whole issue of sex. At night, when you dream, you sometimes think about it and really miss it, but the reality is that my primary goal is to be healthy, happy, and live as long as I can. I don’t need sex for that.

Did you ever seek treatment?

Steve A: I talked to my urologist. After surgery, I used the pump.

Did it work?

Steve A: It was marginally successful. I just wasn’t too keen on it. I thought it was more of a pain than anything else. I didn’t try injections. I tried daily Cialis (tadalafil). That didn’t do anything. The urologist talked to me about having an implant.

I haven’t really given that any thought. Now that I’m back on Lupron (leuprolide), I don’t have the desire for anybody. I’m just totally oriented to quality of life and length of life at this point. Quality of life doesn’t necessarily mean sex anymore.

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Living With Erectile Dysfunction After Prostate Cancer

Tim M. had a Gleason 9 prostate cancer removed by his urologist. He spoke with Prostatepedia about his struggles with ED posttreatment.

How did you find out you had prostate cancer?

Tim M: I had the typical issues that people talk about: urination and a PSA that was increasing a little bit. I had a phenomenal general practitioner, a doctor who really cared. He wanted me to do a biopsy. I was resistant. I said, “Oh, come on, Doc. This must be an infection or something.” Unfortunately, I resisted for about six or seven months, maybe even longer.

Finally, he said, “No, you’ve got to go for the biopsy.” So I went to a top doctor in my area. He did a check and said, “I don’t really think there’s going to be a problem, but let’s do the biopsy.” So I did it. He called and said he was surprised to say that I had aggressive cancer.

What kinds of treatment did you have?

Tim M: I really didn’t have much of a choice. My doctor said I needed surgery right away. He was a leading surgeon with a phenomenal reputation. I had the surgery two years ago.

Did the urologist talk to you before surgery about the potential for erectile dysfunction (ED) after treatment?

Tim M: Not really. He did not really touch on it. We asked him about it at one of the interviews. If we hadn’t asked him, I don’t think he would have really talked about it. I’ll never forget his answer. He said it was 50/50 whether or not I’d get ED.

What happened after the surgery?

Tim M: The surgeon completely removed the prostate. The cancer had gotten out of the capsule, but he thought he got it all because my margins were clean. I was very lucky. He was comfortable that we had it all. I didn’t have any problems with urination. The catheter clogged up one time, which was actually one of my biggest fears, believe it or not.

The catheter?

Tim M: When I was about 17, I went to see a friend who was in the hospital. He had a catheter and he explained to me what they had done to him. It left a burning impression in my mind. There’s a tube where? That kind of stuck with me. That was one of my concerns. I did have some issues with the catheter, but after that, everything was fine except for the erectile dysfunction.

Can you talk a bit about that?

Tim M: Nothing seems to really work anymore.

Have you been able to talk to your urologist about it?

Tim M: He gave me some pills—Cialis (tadalafil) and the other pills. It didn’t help. Then he said to try the injections, which seemed to help a little bit, but not really. He wanted me to increase the dose, but I really didn’t want to do that because of all the warnings: if something goes wrong, get to a hospital right away. The whole deal with the needle and the possibilities of side effects put a damper on things.

Did you talk to him about any other options?

Tim M: He went through all the options with me, including the vacuum and an implant and none of them seemed too attractive to me.

How do you feel about all that?

Tim M: Pretty bad. But you know, as you get older, you begin to accept things a little bit more. I guess you have to. I wasn’t happy about the cancer to begin with. All I can do is do what I can do.

I just turned 70 this month. I also have some cardiovascular issues. I go to the gym. I try to do what I have to do to keep conditions under control as best I can.

My doctor called me at 8:30 the night of my diagnosis and said, “I have to tell you you’ve got an aggressive cancer. It has to come out right away.” There was no light discussion. It’s not like I had a choice. If I had let it go, I would have died.

He was so focused on your cancer that he wasn’t really even thinking about potential ED?

Tim M: Yes, I believe so. That was the priority.

Did you have any problems with incontinence after the surgery?

Tim M: A little bit. I still wear pads, but I barely need them. I just got used to them.

He had suggested that I do Kegel exercises. But it’s weird. Because of my cardio situation, I wind up going to the gym and working like a fool for hours a week, but I just couldn’t get into those exercises. The pads were just too convenient, but that’s pretty much dried up at this point. The only time I have a problem is with stress if I’m exercising or something like that.

Do you have any advice for other men about to have prostate cancer treatment?

Tim M: You have to do what you have to do and deal with what you have to deal with. What you have to deal with might not be too good. There is nothing good about it in my view. My advice is to consider that ED is going to be an issue.

Do you think that more men are suffering from ED than surgeons think?

Tim M: Yes. I do absolutely think that. I’ll tell you something else. It’s a little bit sensitive to talk about, but I’ll just come out and say it. How do you define erectile dysfunction? You know what I’m saying? There are different levels of an erection. Obviously, when you are younger, it’s one way. My question is, where is the threshold? What if you end up with a three-quarter situation? My doctor told me 50% of men have ED, but of the other 50% what in the hell was the quality of what they had left?

Was the erection like what they had before or was it just enough so that they could use it?

Tim M: Yeah, just enough to use. I mean if you’re not going to be able to perform to some degree of quality, why bother?

Also, there’s a secondary problem, which is a psychological issue. When you ejaculate, there’s nothing there.

That must be a bit demoralizing.

Tim M: That was very demoralizing. Some people say, “What’s the difference?” There is a difference. It’s a mental thing. To tell you the truth, my first thought was: “Have I become like a woman? Is this an orgasm that a woman would have?” The physical aspect is not the big thing. It’s how you’re interpreting it and what’s going on inside your mind that’s the major thing.

It changes the whole experience.

Tim M: Thank God this didn’t happen when I was in my forties.

It might be worth going to see an expert in ED.

Tim M: Well, I know all the possibilities. It’s the shots. It’s the vacuum. It’s the operations.

From age 15 to 68, it was all just a natural happening. And now, you’re talking about mechanisms and devices and shots and operations and you have to push a button?

It sort of takes you out of the moment.

Tim M: It puts a whole different perspective on the deal. Men should definitely be prepared for what’s going to happen. I do think more information needs to be out there.

The more men know about what may happen the better they can prepare themselves?

Tim M: Yes. I think where doctors make a mistake, at least in everything I’ve seen and read and everything that the doctor has said to me, is that this is not a binary A or B thing. Do you have ED or don’t you? It’s not like that. It’s more like: do you have no dysfunction or do you have some? Is it the same as before or not? That’s important. My guess is that the vast majority of guys are going to say no.

Cancer + Finances

 

 

The Patient Access Network (PAN) Foundation offers cancer patients help with copay assistance, out-of-pocket costs, insurance premiums, and travel expenses.

Prostatepedia spoke with two members of their team, Mr. Dan Klein and Ms. Amy Niles, about their services for prostate cancer patients.

What does PAN do?

Mr. Klein: PAN’s mission is to help people with life-threatening, chronic, and rare diseases get access to their critical medications and also to advocate on their behalf.

Primarily we provide copay assistance to patients and help them cover the out-of-pocket costs of their prescription medications. We also help with insurance premiums and travel expenses.

We have about 60 different disease areas where we provide assistance to patients. In most of those, we only provide copay assistance, but in a small number of those areas—including prostate cancer—we also provide travel assistance. In some instances, we provide assistance with premiums.

We are a fairly large-scale organization. We help several hundred thousand people a year, and we provide many hundreds of millions of dollars in financial assistance a year. There are many people who need help, the need is growing, and we expect it to continue to grow. By that, I mean more and more people struggle with covering the out-of-pocket costs of their care.

We focus on people with income between 200% and 400% of the federal poverty level. That’s sort of our sweet spot if you will. We focus largely on people on Medicare because, under the regulatory rules, people on Medicare can only get assistance of this kind from independent charities like the PAN Foundation. They’re not able to get help directly from drug manufacturers.

You’re making a distinction between the uninsured versus the underinsured. Does “underinsured” refer to patients who have health insurance that does not cover all of their expenses?

Mr. Klein: Right. We really are organized around helping the underinsured. Within Medicare programs, and Medicare Part D particularly, many people are underinsured because of the high out-of-pocket costs. In Medicare, there’s an infamous donut hole, or coverage gap, that people have to get through. Once they’re through, they still have to pay 5% of the cost of their medication with no out-of-pocket limit. If they take an expensive specialty medication—and many people with prostate cancer take expensive medications—it can easily cost $10,000 a year out-of-pocket just for a single drug.

And you also help with travel?

Mr. Klein: We do. We have a travel fund for people with metastatic prostate cancer. In particular, people who may live far from a treatment center sometimes struggle to afford to get to the specialized care that they need. The travel fund will pick up those expenses related to travel. It could be livery services. It could be the hotel expenses, and we’ll help with those.

What other kinds of out-of-pocket expenses do prostate cancer patients face?

Mr. Klein: There are all sorts of out-of-pocket expenses, and people tend to forget about the fact that it’s not just the copays and deductibles related to the medications. There can also be out-of-pocket expenses related to their medical care or to hospitalization.

How can patients apply to benefit from your programs? What’s the process like?

Mr. Klein: It’s a very streamlined process. Patients can enroll in multiple ways. They can come to our website and enroll through the patient portal, or they can call our 800 number and enroll. Many patients are enrolled by their physicians or by their pharmacists. A pharmacist or physician can enroll a patient through the portal or the call center.

It takes around 10 minutes to complete the enrollment. Within that 10 minutes, they’ll learn whether or not they’ve been approved, and if so, they can use the grant immediately to fill a prescription.

Are they one-time grants or recurring?

Mr. Klein: The grants are for a maximum amount. In the case of prostate cancer, that amount would be $7,500 a year. That’s meant to cover out-of-pocket costs for one year. We use a lot of data to help us try to set that number. Patients who need more than that can ask for a second grant in that same 12-month period. Then at the end of the 12 months, they can renew the grant, provided funding is available.

The eligibility criteria for prostate cancer are that the patient has to be at or below 500% of the federal poverty level, and they need to live in the US. It’s a Medicare-only fund, so they need to have Medicare coverage, not commercial coverage. Patients who have commercial insurance coverage can get help directly from drug manufacturers.

Are there any nonprofits who do something similar for private health insurance companies?

Mr. Klein: Charities like PAN generally provide a similar kind of assistance to patients on Medicare. The reason is that under the Anti-Kickback Statute, drug manufacturers are able to serve people who have commercial insurance, but they’re not able to serve people who have coverage through Medicare.

As an independent charity, we’re highly regulated in what we can do, and we have to keep an arm’s-length relationship from the drug manufacturers. For example, we’re required to cover all of the different medications that might be needed by a patient with prostate cancer. We cover about 35 different medications for prostate cancer.

What about people who are completely uninsured? Is anyone offering help to them?

Mr. Klein: Yes. There are several ways that those patients can get assistance. Drug manufacturers operate Patient Assistance Programs (PAPs), or free drug programs. These are designed to help people who do not have insurance and who are below a certain income threshold. It varies from manufacturer to manufacturer.

The other option is to talk to one of the patient advocacy groups that help navigate the system to find insurance coverage available through the Affordable Care Act (ACA) health exchanges or possibly through Medicaid.

Are financial issues more prevalent in patients who are newly diagnosed and starting on medications, in patients who have been through a couple rounds, or is it all over the map?

Mr. Klein: All of the above. Our particular prostate cancer funds are for people with metastatic prostate cancer. That could either be newly diagnosed patients who were diagnosed at a later stage, or it could be patients who had been diagnosed with local disease that has progressed.

With the types of treatments available today, many patients live longer and manage their disease almost like a chronic disease, and so they may need assistance with out-of-pocket costs for a number of years.

Anything else patients should know?

Ms. Niles: We are very pleased to be working with Us TOO so that patients who contact PAN for assistance can benefit from the range of services that the organization provides. Financial assistance is obviously very important, and it removes barriers to care. But patients, especially when first diagnosed, have many questions about their illness. Addressing those concerns is beyond PAN’s mission, but it’s not beyond what we want to do for patients.

We have aligned with Us TOO which helps patients have a conversation about their illness, medication adherence, and provides a range of support services.

We have close to 20 alliances with various leading patient advocacy organizations to provide this level of support for patients.

Does Medicare refer patients to you?

Mr. Klein: Medicare does. If you go to http://www.cms.gov, they have a whole page that refers people to PAN and programs like PAN.

Do you have any advice for patients who face these issues?

Mr. Klein: There is help available. Patients should not get frustrated or despondent. If a patient calls PAN and we can’t help them, we’ll try to refer them to someone who can.

Ms. Niles: I think it’s really important for patients to have conversations around cost. It’s a difficult conversation to have with their physician or the staff in his or her office. We don’t want patients to refuse treatment because of costs or do things like cut pills in half, delay treatment, or go into medical debt and bankruptcy because of the cost. They should have these conversations and know that resources exist to help them.

Why are patients hesitant to have these conversations?

Mr. Klein: Someone who’s provided for himself for most of his adult life who then gets diagnosed may feel isolated and stigmatized in terms of asking for help. For people who are older, it can feel uncomfortable. Patient advocacy groups like Us TOO and charities like PAN can help them navigate these issues as well.

I imagine there must be a lot of fear involved. Not only are you struggling to pay for your medication, but what is it going to mean for your financial future?

Mr. Klein: Healthcare cost is still one of the leading causes of personal bankruptcy in the US.

Is that more problematic among, for example, older patients who are perhaps on a fixed income?

Mr. Klein: Yes. It’s more problematic for older patients who have serious illnesses because they aren’t able to recover financially. They may not have the ability to go back to work. They may not have a lot of assets. It’s a challenge across the board.

From a public policy perspective, we’re concerned that an increasing number of people have difficulty meeting the deductibles, copays, and coinsurance. And yet, the direction that the insurance industry and the government have taken is not going to make that problem go away anytime soon. We’re worried about the current situation and even more worried about what may come in the next year or two.

What about people who would like to donate?

Mr. Klein: Like any not-for-profit, we are happy to get donations from all sources. Because of the amount of money that’s needed to support the large number of patients who need help, the drug manufacturers are our main source of support. Without their help, we wouldn’t be able to provide the number of grants that we do.

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Your Number One Fan Is Looking for Love

 

Wellness speaker Angela Gaffney teaches simple and effective strategies to help people achieve health, increase productivity, and live stress-free while reaching their personal and professional goals.

She offers her tips for nurturing your Number One Fan.

Picture your number one fan, the one who supports you most in life. The one who shows up no matter your mood, how tired you may be feeling, or how much pain you may be experiencing. Whatever the situation, your number one fan is there for you. I’m sure many of you pictured your spouse, partner, or maybe a parent or best friend. While these people are all great supporters in your life, your number one fan is much, much more! Your number one fan is your body.

We hurry through life at such a fast pace that we often forget to support the one that supports us most! Sometimes it takes a diagnosis or health crisis before we realize that our body may need more from us than what we’ve been willing to give. It was true for me, and it was true for many of you. Caring for your body goes far beyond just eating well and exercising. It takes commitment and conscious effort to ensure you’re giving your body all it needs to heal and achieve optimal health.

We all need to practice these four principles to care for our bodies through diagnosis, treatment, and in lifelong health.

Build Awareness

Daily habits are so second nature that it’s easy to underestimate the impact they have on our health. Start tapping into your daily habits and assess whether they’re offering you the supportive environment your body needs to heal and be well. If change is needed, take it one step at a time.

Consciously Choose

We often make decisions, big and small, out of convenience, haste, or emotions we’re feeling. It’s time to pause and choose differently. Before every decision you make, stop and ask yourself: “What will this provide me?” Just answering this one question will help you make a conscious choice and to move forward in a healthy direction.

Create a Supportive Environment

It’s hard to avoid sugar if there are cookies and cake in the kitchen. Building a supportive environment is of greatest importance if your goal is lifelong health. Replace processed foods with whole, fresh foods that nourish the body. Say no to unnecessary obligations to give yourself space and time to heal. Share your needs with your friends and family so they too can support you in this journey. Everything in our environment— the food we eat, the toxins we’re exposed to, and the stress we feel from everyday life—impacts our health. Do your best to create a healthy, supportive environment for you and your family.

Above All Else, Be Kind

You are on a health journey, which means some days will be easier than others. Use positive affirmations and encouraging words to support yourself in healing and lifelong health. If you veer off track, assess what you’d like to do differently next time and move forward. You have a choice in every matter, and you get to decide how you’d like to participate. Above all else, be kind to yourself in the process.

You are your best advocate! Take care of your number one fan by assessing your current habits, making conscious choices that serve you well, creating a supportive environment, and above all else, being kind to yourself through the process.

To hire Angela to speak at your next event, discuss a wellness program for your corporation, or take advantage of complimentary health tools, please visit http://www.AngelaGaffney.com.

Sex Therapy After Prostate Cancer

Dr. Erica Marchand is a licensed psychologist specializing in couples therapy and sex therapy in Los Angeles.

Prostatepedia spoke with her about the impact erectile dysfunction after prostate cancer can have on couples.

Why did you become a psychologist?

Dr. Erica Marchand:: I’ve seen plenty of ups and downs in my own life and in the lives of family and friends. I started to be curious about how some people seem to weather life’s ups and downs and always land on their feet, and how other people seem to get worn down and diminished by the hard times. So I became a psychologist in part because I wanted to know how to help people become more resilient to life’s problems.

What is it about working with patients in couples and sex therapy that you find most rewarding?

Dr. Marchand: Intimate relationships are so integral to human life. We’re wired for connection with other people, and in romantic partnerships, part of that connection involves sex. When relationships are going well, they’re a source of happiness, care, and nurturing; when they’re going badly, they can be miserable for everyone involved. People who have satisfying, loving relationships tend to have better long-term physical and mental health outcomes. So I find it incredibly rewarding to help people get back to happiness in their relationships.

I find it particularly rewarding to provide space to talk openly about sex since it’s so often taboo but is such an important part of life, pleasure, and connection for so many people.

What are some of the psychosexual issues that can come up for men with prostate cancer and their partners? How do these issues impact their sex lives and their marriages?

Dr. Marchand: There are several issues that tend to come up. First, the experience of cancer can be pretty scary and life-changing. Even though prostate cancer is usually curable these days, many men and their partners feel fear, worry, sadness, and stress going through the process of diagnosis and treatment. Partners can become caregivers and/or temporarily take on additional roles, which can strain both partners but can also lead to greater closeness, understanding, and strength in the relationship.

Second, some of the most common side effects of prostate cancer treatment involve changes in sexual function. Prostate surgery and radiation can lead to erectile dysfunction and, less commonly, retrograde ejaculation. Androgen-blocking drugs can decrease sexual interest and desire. Those effects can interrupt or change a couple’s sexual relationship, and it can take some communication and effort to re-create a sex life together.

How does therapy for prostate cancer patients work? Just talking about what is going on?

Dr. Marchand: To some extent, yes. There’s plenty of talking in therapy about what is going on. I also tend to work with my clients to come up with strategies to improve things and try them out. For example, if someone is struggling with high stress and anxiety, we might integrate some stress-reducing activities into that person’s life in addition to talking about the problems. If someone is trying to re-create a sex life with their partner, we might identify some activities that feel good and fit into their current sexual functioning.

Does your approach to prostate cancer patients differ from your approach with men without cancer?

Dr. Marchand: There is definitely some overlap in therapy for sexual concerns for men with and without prostate cancer. But with prostate cancer, we’re also talking about all the other concerns that come along with having cancer.

Do you have any advice for men who are about to start prostate cancer treatment and are worried about potential erectile dysfunction? Or for men who are already dealing with erectile dysfunction and related sexual issues post-treatment?

Dr. Marchand: Yes! Talk to your urologist about your concerns and about anything you can do to help restore erectile function after treatment. Ask about the pros and cons of different treatment options for maintaining sexual function. Also, try to have an open, honest discussion with your partner about sex before and after treatment. Try to keep your partner in the loop about your current sexual functioning and interest and any concerns or questions you might have. If you find yourself really struggling to adjust, or have difficulty communicating with your partner about sex, consider scheduling an appointment with a therapist who specializes in sexual concerns to help get you back on track.

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Sexual Rehabilitation After Prostate Surgery

Dr. Christian Nelson is a Clinical Psychologist at Memorial Sloan Kettering Cancer Center and liaison to the genitourinary and sexual medicine services.

Prostatepedia spoke with him about his clinical trial on helping men adhere to a sexual rehabilitation program after prostate cancer surgery.

Can you walk us through the trial you’ve been running?

Dr. Nelson: The trial is attempting to help men utilize penile rehabilitation following prostate cancer surgery. Just about every man is going to lose his erections right after surgery. There is hope of recovery. Ultimately, what helps that recovery is penile rehabilitation, which is based on the notion that all men will have difficulties with erections after surgery. Men do not get nocturnal or morning erections, nor do they get erections in a sexual situation after surgery. If that’s the case, the penile tissue can atrophy. When penile tissue atrophies, it’s a little different than other muscles that can be built back up.

Hopefully, the surgeon has done nerve-sparing surgery—sparing the two nerves that run bilaterally along the prostate to the penis, the nerves responsible for erections. If the prostate cancer is not close to those nerves, the surgeon can pry away from the prostate. The surgeon must then stretch, clamp, and pull the nerves out of the way. Then they remove the prostate, and the nerves adhere to the prostate bed. Even though the nerves have been saved, those nerves are injured intraoperatively. It’s that injury that causes the erectile dysfunction or the difficulty with erections.

It can take about 18 to 24 months for the nerves to heal. That’s a two-year recovery period. In that time, if men are not getting either nocturnal or morning erections nor erections in a sexual situation, then that penile tissue can atrophy. The idea is to help men get medication-assisted erections consistently in this period where the nerves are healing.

Which medications do they usually use?

Dr. Nelson: The first choice is pills: the PDE5 inhibitors like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). Those work off of the nitric oxide secreted from the nerves, so if the nerves aren’t healthy and aren’t secreting nitric oxide, then the mechanism of action for those pills isn’t there. For many men after surgery—especially right after surgery—those pills aren’t effective.

For most sexual medicine professionals who do this kind of rehab, the next step is to use penile injections to restore erections. The injections are used every time a man wants an erection. The injection is in the shaft of the penis, toward the base. It’s a very thin needle, so it doesn’t really hurt. For example, after the first injection, we’ve asked men how painful it was on a zero to 10 scale, where 10 is pain as bad as you could imagine. Men generally rate the pain between a zero and two on the pain scale. There’s anxiety associated with it, but after you do it a few times, the anxiety tends to dissipate.

The notion of penile rehabilitation then for most men is to use these penile injections about two or three times a week. The idea is that the injection will pull oxygen-rich blood into the penis, give the man an erection, and keep the penile tissue healthy. In terms of rehabilitation, what men do with the erection is up to them. It can be used in sexual situation or not. The idea is just to have an erection to keep the penile tissue healthy.

With injections, the goal is to get an erection two to three times a week through the recovery period, which is up to two years. The hope is this will give men a better chance to recover erections. We don’t know exactly what will happen. But the data suggests that this gives men a better chance of recovering erections on their own without medications.

Then if they don’t recover erections, they have a better chance of responding to pills, like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). That’s the rehab program.

Now, you can imagine that it’s hard for men to stay on that type of penile program.

How do you help men adhere to the rehabilitation program?

Dr. Nelson: Compliance is difficult with any type of medication, and now we’re asking men to self-inject their penis two to three times a week. Men say that difficulty with erections is a shameful experience. There is fear of entering into sexual situations with ED, and on top of this, the notion of injections causes fear.

Our intervention explains this process of avoidance, and then uses concepts such as why it’s important to recover erections in terms of his or the couple’s values. Maybe he wants to feel like a man again. Maybe he wants to just feel healthy again or whole. If a man is single and dating, maybe he wants to feel that he can still date. The idea is to start with the values and build from there.

Can you walk us through the trial you’ve been running?

Dr. Nelson: The trial is attempting to help men utilize penile rehabilitation following prostate cancer surgery. Just about every man is going to lose his erections right after surgery. There is hope of recovery. Ultimately, what helps that recovery is penile rehabilitation, which is based on the notion that all men will have difficulties with erections after surgery. Men do not get nocturnal or morning erections, nor do they get erections in a sexual situation after surgery. If that’s the case, the penile tissue can atrophy. When penile tissue atrophies, it’s a little different than other muscles that can be built back up.

Hopefully, the surgeon has done nerve-sparing surgery—sparing the two nerves that run bilaterally along the prostate to the penis, the nerves responsible for erections. If the prostate cancer is not close to those nerves, the surgeon can pry away from the prostate. The surgeon must then stretch, clamp, and pull the nerves out of the way. Then they remove the prostate, and the nerves adhere to the prostate bed. Even though the nerves have been saved, those nerves are injured intraoperatively. It’s that injury that causes the erectile dysfunction or the difficulty with erections.

It can take about 18 to 24 months for the nerves to heal. That’s a two-year recovery period. In that time, if men are not getting either nocturnal or morning erections nor erections in a sexual situation, then that penile tissue can atrophy. The idea is to help men get medication-assisted erections consistently in this period where the nerves are healing.

Which medications do they usually use?

Dr. Nelson: The first choice is pills: the PDE5 inhibitors like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). Those work off of the nitric oxide secreted from the nerves, so if the nerves aren’t healthy and aren’t secreting nitric oxide, then the mechanism of action for those pills isn’t there. For many men after surgery—especially right after surgery—those pills aren’t effective.

For most sexual medicine professionals who do this kind of rehab, the next step is to use penile injections to restore erections. The injections are used every time a man wants an erection. The injection is in the shaft of the penis, toward the base. It’s a very thin needle, so it doesn’t really hurt. For example, after the first injection, we’ve asked men how painful it was on a zero to 10 scale, where 10 is pain as bad as you could imagine. Men generally rate the pain between a zero and two on the pain scale. There’s anxiety associated with it, but after you do it a few times, the anxiety tends to dissipate.

The notion of penile rehabilitation then for most men is to use these penile injections about two or three times a week. The idea is that the injection will pull oxygen-rich blood into the penis, give the man an erection, and keep the penile tissue healthy. In terms of rehabilitation, what men do with the erection is up to them. It can be used in sexual situation or not. The idea is just to have an erection to keep the penile tissue healthy.

With injections, the goal is to get an erection two to three times a week through the recovery period, which is up to two years. The hope is this will give men a better chance to recover erections. We don’t know exactly what will happen. But the data suggests that this gives men a better chance of recovering erections on their own without medications.

Then if they don’t recover erections, they have a better chance of responding to pills, like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). That’s the rehab program.

Now, you can imagine that it’s hard for men to stay on that type of penile program.

How do you help men adhere to the rehabilitation program?

Dr. Nelson: Compliance is difficult with any type of medication, and now we’re asking men to self-inject their penis two to three times a week. Men say that difficulty with erections is a shameful experience. There is fear of entering into sexual situations with ED, and on top of this, the notion of injections causes fear.

Our intervention explains this process of avoidance, and then uses concepts such as why it’s important to recover erections in terms of his or the couple’s values. Maybe he wants to feel like a man again. Maybe he wants to just feel healthy again or whole. If a man is single and dating, maybe he wants to feel that he can still date. The idea is to start with the values and build from there.

Subscribers can read the entire conversation in their September 2017 issue.

Not a member? Subscribe to learn more about Dr. Nelson’s trial and the type of patients he’s recruiting.

Is ED More Common After Certain Prostate Cancer Therapies?

Dr. Nelson Bennett, an Associate Professor in the Department of Urology at the Feinberg School of Medicine at Northwestern University, specializes in erectile dysfunction.

Prostatepedia spoke with him about erectile dysfunction after prostate cancer treatment.

Is ED more common after certain types of prostate cancer treatments?

Dr. Bennett: After prostate cancer surgery, 100% of people have ED. It gets better with time, but initially, 100% experience softening of the erection. And it can take up to two years to recover.

When radiation therapy starts, men don’t experience any erectile issues. As the years go by, up to about five years, they settle down to the level of those who’ve had prostate cancer surgery. There’s a slow decline in erectile dysfunction after radiation.

What about hormonal therapy? If you block testosterone, you’re going to block out erections too, right?

Dr. Bennett: Yes, you’re going to have immediate decreases in erectile rigidity, libido, sexual thoughts, and so on. Usually, hormonal therapy is used in conjunction with radiation, so they end up getting lumped together. The penile muscle has testosterone receptors, and if they’re not filled, the muscle doesn’t function as efficiently as it could or should..

You said 100% of men have erectile dysfunction after surgery, and they slowly recover over the course of two years. Why is that?

Dr. Bennett: The prostatectomist has to get the whole prostate out with the cancer inside of it. The nerves that go down to the penis run right along the side of the prostate. Simply exposing or touching those nerves damages them. It causes a concussion, or stunning, of those nerves, and they just don’t function as efficiently immediately after surgery.

It takes a good two years for those nerves to become as functional as they’re going to be. All else being equal, 60% of men will get back to where they were prior to surgery if they have had good nerve sparing and if they had excellent erections prior to their surgery.

Are Male Survivorship Treatments Experimental?

 

Dr. Martin Miner is the Co-Director of the Men’s Health Center at The Miriam Hospital in Providence, Rhode Island.

Prostatepedia spoke with him about how his center helps men who have erectile dysfunction after prostate

How common is ED in the general population? What causes it?

Dr. Miner: Most studies show that ED occurs in 50% or more of men. The public thinks it’s related to aging, but in truth, it’s more prevalent with aging because there are more comorbidities (meaning coexisting medical problems) that occur in men as they age. As men age, they tend to develop high blood pressure, elevated lipids, and type 2 diabetes. Many become obese, and specifically get visceral adiposity, or belly fat. Erectile dysfunction is related to all of these conditions.

Once present, ED is not only related to the issue of vascular filling but also to psychological issues. Men are devastated when their sexual function is impaired. They become anxious and performance-focused. That only makes attaining an erection more difficult.

What kind of an impact can ED have on a man?

Dr. Miner: For most men, ED affects every phase of their lives. We’re pretty simple creatures. From youth, we are used to waking with morning erections, and whether we used them or not, they can be validating, making us feel virile and healthy.

When that no longer happens or when we have difficulty achieving erections, it impairs our self-esteem. We can become depressed and frustrated, which can cause us to seek to blame and distance ourselves from those we love, especially our sexual partners. We no longer initiate lovemaking and are unreceptive to lovemaking because we don’t want to do something at which we consistently fail.

Most cases of ED begin with difficulty keeping erections and then progress to difficulty getting and keeping an erection. It’s a gradual process, almost insidious in nature. You know that your erections are no longer rigid or hard. Your partner is aware of it as well, so you can become ashamed.

Does that shame prevent men from seeking help?

Dr. Miner: At some point, most men will seek treatment. Medications like sildenafil have revolutionized the way we look at sexual functioning. They’ve allowed men who previously might have been quiet and accepted this as a normal part of aging to address an impairment that they no longer feel they need to accept.

They’ll bring it up to their clinician. It may be difficult for them to raise that issue with their clinicians, though, since they might feel embarrassed. Often it’s an end-of-the-visit discussion or what we call a backdoor complaint: “By the way, Doc, do you have any samples of Viagra?”

Studies show that patients appreciate when providers initiate discussions about their sexual functioning. Even if they have no problems, they feel validated because they know they can raise the issue of sexual functioning if necessary.

Women now outnumber men as primary care clinicians. While many women have no difficulties asking men about sexual function, some do. We need to retrain those female providers to help them feel comfortable.

How common is ED after prostate cancer?

Dr. Miner: We know that erections occur normally due to an increase in blood flow, or vasodilation, of the very small blood vessels that fill the penis. It’s also related to neurologic excitation, or release of a gas called nitric oxide, which is why meds like Viagra (sildenafil), Levitra (vardenafil), and Cialis (tadalafil) work; they prevent the breakdown of that gas. A neurologic, vascular, endocrinologic (hormonal) insult, or compromise, can cause ED.

In prostate cancer, there are insults in all three of those spheres, the most significant being the complete loss of erections following surgical treatment, which has an incidence of 98%. It is also associated with complete incontinence.

The nerve bundles around the prostate gland are like tendrils of a spiderweb, and it’s very difficult not to harm those bundles. When those bundles are even exposed to the atmosphere, opened, or touched, they go to sleep. Not even the best surgeons can spare them. After surgery, they have to return to function over time.

The first thing that happens after prostate cancer is men have an overwhelming fear about their incontinence. They wear pads, which can be very humiliating. Their first desire is to get dry and we recognize that. Then we work on a program to reawaken these nerve bundles to the penis while we continue to keep their penile tissue healthy until recovery.

There are some emerging treatments for less aggressive prostate cancer, like proton beam therapy, which may have less of an impact on sexual function. But most, if not all, therapies for prostate cancer have a significant and direct impact on sexual function. Male survivorship treatments, including the return of sexual function, are not covered by insurance because they’re termed experimental.

Subscribe to read the rest of the conversation.

(Subscribers were sent a copy of the issue on September 1!)

 

Erectile Dysfunction After Prostate Cancer

Dr. Abraham Morgentaler is the Founder of Men’s Health Boston (www.menshealthboston.com) and an Associate Clinical Professor of Urology at Harvard Medical School, Beth Israel Deaconess Medical Center. He is a regular contributor to television and radio shows addressing male issues and has appeared on NBC Nightly News, CBS Evening News, CNN with Anderson Cooper, and The Connection on NPR.

Dr. Morgentaler frames this month’s Prostatepedia conversations on erectile dysfunction and testosterone after prostate cancer.

Erectile dysfunction (ED) affects a very high percentage of men who get any form of treatment for prostate cancer. And yet, ED is an issue that has not received enough attention. I’ve certainly seen many men who didn’t want to have any treatment for their prostate cancer because they were afraid they were going to lose their ability to have sex. Some men say it’s not worth it: “If I can’t have sex, I’m not a man. I feel like I can’t provide sexually for my partner.”

In my last book The Truth About Men and Sex, I discuss a number of cases from my practice. I think that people have misunderstood what sexuality is for men. The stereotype is that men are stuck back in their spring break years regardless of how old they are or how much they’ve evolved and matured and that they’re only into sex for themselves and their own satisfaction.

The truth is that many of the men I see who are in established relationships feel terrible about their erectile dysfunction not only for themselves but also because they feel like they’re letting down their partner.

Sex, as I like to say, is the special sauce of relationships. It’s the thing we don’t talk about much, but most happy couples are having sex and most unhappy couples are not. That doesn’t mean that happiness comes directly from the sex, but it’s part of it certainly.

Now, the good news for men is, thanks to advances in modern medicine, we can help pretty much any man be able to have sex, even if he’s got erectile dysfunction from treatment of his prostate cancer. It may not be quite as easy and simple as sex was beforehand, but losing one’s erections after treatments of prostate cancer doesn’t mean that it’s the end of a man’s sex life.

The reasons why men develop ED after prostate cancer depend on the form of treatment he’s had.

For surgery—one of the most common prostate cancer treatments—the issue is likely related to the nerves that control erections, which run to the penis but are plastered along the sides of the prostate itself.

In 1982, Dr. Patrick Walsh of Johns Hopkins figured out how to save the nerves in what’s called a nerve-sparing procedure. Before that, 100% of men who had the surgery had ED afterward. But even this nerve-sparing technique, which has been used for 30 years, is imperfect.

Subscribe to read this month’s conversations about ED after prostate cancer.

Almost allT men will lose their erections for a period of time after surgery. A good number will get them back, but it’s much less than 100%. Some estimates say 20% will be able to recover erections fully, and others say 50%. Based on my experience and the literature, I’d say probably about 25% of men are able to regain full erections without the need for aids like Viagra (sildenafil) and Cialis (tadalafil).

 

Radiation and brachytherapy, in which radioactive pellets, or seeds, are placed within the prostate, can cause trouble in two ways. One is by damaging the tissues of the penis through the radiation, as the deep structures of the penis are not that far from the prostate. The second is that they may hurt the nerves that control the erections just like with surgery.

 

The difference with radiation is that ED is delayed so that right afterward, men who were fine before treatment are still fine. Two years following treatment, the number of men with good erections is pretty much the same for both radiation treatments and surgery.

 

For men about to go into treatment, I think it’s important to consider that ED becomes more prominent as you get older. The number of men in their 60s and 70s who have erectile dysfunction is very high. The Massachusetts Male Aging Study published in the 1990s showed that men between the ages of 40 and 70 had a 52% self-report rate of some degree of ED.

 

For those men who already have ED, the decision to have surgery or radiation for their prostate cancer is a little bit easier. Regardless of the cause of ED, there are doctors who care and offer services to help men to have sex again, whether they’ve had prostate cancer treatment or not.

 

It’s a difficult question about how to balance treatments that may save one’s life 10 years down the road with the unpleasant and unwanted side effects that may begin right after treatment. That decision is complicated further by confusion about which prostate cancers need to be treated. We’ve been treating too many men, leaving them with little in the way of upside for benefits and with all the complications that come from treatment.

 

If you have been diagnosed with prostate cancer, the first step is to determine if yours is the type of cancer that’s going to affect you in your lifetime. The second step is to have an honest, open conversation with your physician about what it means in terms of sexual function.

 

I see a lot of men before they decide on a treatment: they want an opinion about how likely it is that the radiation or surgery will affect them sexually before deciding on a path.

 

At that point, we go over the options available to them after treatment. If you have that conversation, you may then have a clearer mind about getting treatment. One of the relatively nice things about prostate cancer, as compared to many other cancers, is that it does tend to grow slowly, giving you the luxury of being able to make decisions and gather all the information over a period of time without really affecting your outcome.