Who’s a survivor?  You are, if you are trying to get your life back after a diagnosis of prostate cancer.

 

            Survivor.  What does that word bring to mind?  (Besides, of course, the name of the rock band whose song, “Eye of the Tiger,” went double-platinum in 1982 and was the theme of “Rocky III.”)

            There are more prostate cancer survivors now than ever before.  More men are being cured of localized disease, and more men are living longer with advanced cancer than ever before.  This is great news!  It also means that, as men live longer after treatment for prostate cancer, they have new things to deal with – which brings us to the evolving area of cancer survivorship.

             Survivorship is basically the day-to-day effort to live your best life during or after treatment for localized cancer, or between and in the midst of treatments for more complicated disease.  It’s such a big part of cancer treatment now, in fact, that medical centers are devoting significant resources to it.  One of them is Dana Farber, where medical oncologist Alicia Morgans, M.D., will soon become the new Medical Director of Cancer Survivorship.

The criteria for survivorship used to be a lot more strict, she notes.  “The old-fashioned definition would say that patients living with cancer are not survivors” – that a true survivor could only be someone whose cancer has been cured.  That has changed.  “Now, anybody living after a diagnosis of cancer is a survivor and deserves to have the best quality of life possible.

Good news: for many men recovering from treatment or living with prostate cancer, help is available.  But it may be up to you to ask for it, if your doctor doesn’t address it specifically.

Note:  Here is where your spouse, partner, family or friends can help.  Those who love you may be aware of some things that you might not have noticed, and their insights can help your doctor take better care of you – if you say it’s okay for them to talk about it.

“Men are stoic, and may not feel comfortable admitting a weakness or vulnerability, or they may not have the words to describe what they’re going through,” says Morgans.  “Or, they may not perceive a problem, but their caregivers or loved ones may.  Raising their concerns – with the permission of the patient – to the doctor can be very helpful.”  This is especially true, she adds, in cases where the patient is experiencing “psychological distress, depression, anxiety, and may not recognize it.  Sometimes the caregiver can say, ‘You don’t realize it, but you’ve had a really short temper.’ Or, ‘You may not recognize it, but you’re sleeping all day, and you’re not eating.’Or, ‘Your cancer is controlled, but your behavior is very different, and you seem really down.’  We may not perceive these changes as being different or outside our norm, but if they’re empowered to speak (with your permission!), your caregiver or family members can really help reflect back to us more accurately what’s happening with you.”

While visiting the doctor, phone a friend!  If it’s not possible for a family member to be there at the appointment, no problem!  “We can often call or conference a loved one in,” with Zoom, FaceTime, or through the medical center.  There are also “electronic ways,” Morgans adds, for loved ones to communicate with the doctor.  You can write an email to the doctor, using the patient’s portal – or even your own.  “In many systems, caregivers can have an account that’s connected to the patient.  I have many patients whose spouse has an adjacent account.  Others just use the patient’s account.”

Be sure to identify yourself, that this is the patient’s daughter, spouse, or friend.  “Don’t represent yourself as the patient if you’re not the patient.”  This does happen, Morgans says.  “Sometimes wives will get on there as the patient, and you know it’s the wife: women tend to talk a lot more than men!  I’ll see a long description, and write back, ‘Is this John’s wife?’”  The information is still appreciated, she adds.

“If there’s something they think the doctor needs to know, and if they’re empowered by the patient to speak to us, the caregiver or spouse can intervene in a meaningful way.”

Sexual Health

Sexual health is “one of the most underrecognized issues” for prostate cancer patients and their partners.  One big reason why is that men just don’t want to talk about it, either because they keep hoping it will get better, or they just decide to be stoic and carry on.  “Even though we have a roadmap for how to address these issues after surgery or radiation, we often lack the support system,” says Morgans.  “There are way too few sexual health counselors specifically dedicated to helping men recovering from prostate cancer.”  And yet: “This is an area of high interest to many patients.  Sexual health affects their personal experience, their mood, energy, everything they do.”  It also affects the health of their partners.

Although this is the issue many men wish would just go away, what they need to do is just the opposite of hoping for the best:  be proactive.  If you had surgery and you haven’t already had this discussion with your urologist, find out what you can do for penile rehabilitation.  This may include pills such as Viagra, Cialis, or other PDE5 inhibitors; vacuum devices for stretching the penis to protect against scar tissue formation; in-office or at-home treatment with a small TENS unit to stimulate nerve regeneration and help with return of urinary control; penile injection; or a penile implant.

Don’t suffer in silence!  Don’t listen to anyone, yourself included, who thinks, “Your cancer has been cured. Just be happy with that.”  There are many steps you can take to recover your sexual health – but they won’t happen if you don’t ask for help.

Intimacy: This is not the same as sexual health, but men on ADT and their partners still need intimacy.  If your oncologist or medical center does not provide counseling in this area, ask for a referral to a sexual health counselor, and keep this in mind: you are not alone, whether you’re the patient or his partner.  There are thousands of couples dealing with this issue, as well.  Your doctor also may be able to recommend support groups, online and affiliated with local medical centers.

Fighting Back on ADT

ADT will try to affect your overall health, but here’s the good news:  you can fight back, Morgans.  Arm yourself with what it might do, and you will be better able to protect yourself against its tactics.  So here, in no particular order, are some of the things ADT might affect, and countermeasures you can take:

Bone health:  Prostate cancer can affect your bones, and so can ADT, in different ways.  Treating prostate cancer in the bones not only protects them, it can improve survival!  ADT raises your risk of osteoporosis – but not only is this treatable, it’s not a “done deal” that every man on ADT will develop it!  “Avoiding fractures is so important,” says Morgans.  “Men who have fragility fractures (due to osteoporosis) can lose their mobility and independence, and can have some major changes in their lives until those fractures are repaired.  If we simply follow the guidelines we already have on how to care for bone and prevent osteoporosis, we can improve those outcomes pretty dramatically.

A lot of the complications associated with ADT are absolutely things that we can address head on, try to prevent and to reverse; for instance, we have effective therapies to counteract bone thinning and lower the risk of fracture and complications from weak bones.  Many of the known side effects of ADT are not necessarily inevitable.”

Your risk of cardiovascular disease:  Here’s some good news:  A new drug, Orgovyx (relugolix), was approved in December 2020 by the FDA for men with advanced prostate cancer, based on results of the Phase 3 HERO study.  It lowers testosterone, but it works in a different way.  It’s also administered differently – a once-daily pill instead of a shot – and it has a significantly lower risk of major adverse cardiovascular events compared to Lupron (leuprolide).  If you have cardiovascular risk factors, such as high blood pressure, high cholesterol, a family history of cardiovascular disease, diabetes or pre-diabetes, if you’re overweight or if you smoke: heart disease needs to be on your radar, because ADT can make it worse. “Multiple studies have shown that men who have cardiovascular risk factors, particularly if they are not addressed, have higher rates of complications and even death on ADT,” says Morgans.  But treating these risk factors with diet, exercise, and medication if needed, can “improve overall survival and also quality of life.  When your body is healthier, you feel better.”

Note:  For just about every category on this list, exercise is one of the answers.  Men on ADT who exercise lower their risk of having cardiovascular and cognitive effects, developing insulin resistance, diabetes or pre-diabetes, obesity, and high blood pressure.  “All of these are modifiable risk factors,” says Morgans.

Depression:  “Depression is highly treatable,” says Morgans.  “This is important, because evidence suggests that men treated with ADT do have higher rates of depression than men who have prostate cancer but are not receiving ADT.”  But depression is underdiagnosed and undertreated in men on ADT, she adds, “perhaps because of reticence to ask for help, or a perceived stigma with mental illness,” or perhaps because it has crept up, and the patient hasn’t recognized that there’s a problem.  This is where friends, family and caregivers can help.  Depression can affect sleep, appetite, and memory, as well.

Cognitive changes:  ADT can cause cognitive decline and dementia.  However, this is more complicated than it sounds, Morgans notes.  For one thing, symptoms of depression can be mistaken for cognitive decline, and can improve with antidepressants and exercise.  For another, there are multiple forms of dementia, including vascular dementia.  “If that risk is increased because of ADT, then a medicine that reduces the risk of major adverse vascular events could feasibly lower the risk of dementia, as well,” although this remains to be proven in large-scale studies. In general, “what’s good for the heart is good for the brain,” and taking steps to improve your cardiovascular health will help protect your cognitive function, too.  “We also have strategies and mental tricks to help improve memory, and even medicines that may slow the progress of Alzheimer’s.”  The key is to tell your doctor, and get further evaluation and help if needed.  “The choice of therapies may help, as well,” Morgans notes. “In multiple ongoing studies, some really interesting MRI data suggests that there may be differences in some distribution of blood flow in the brain” between androgen-targeted medicines, “including one study with darolutamide that has just launched.”

Hot flashes:  “At its basic level, ADT is lowering testosterone, which keeps men’s bodies functioning in a way they’re used to,” says Morgans.  “Just as we see when women go through menopause, there are widespread changes.  The constellation of symptoms is much broader than just the effects of ADT on the prostate cancer cells themselves.”

Among the most annoying and persistent – and undertreated – are hot flashes, which “can affect mood, sleep, and cognition,” says Morgans.  A novel approach on the horizon is a “wearable,” she adds.  It’s like an Apple watch, and can be linked to your phone.  The basic idea is to stimulate the autonomic nerves on the wrist, with a cool sensation.  “PCF is actively engaged in supporting work that can potentially improve quality of life and reduce hot flashes in men on ADT.  This is an area with much room for improvement, where attention is needed, and pharmacologic therapies aren’t as effective as we wish.”

For now, treatment with antidepressants may help; so can exercise.  Many men seek relief of symptoms with holistic treatments, including relaxation therapy, hypnosis, cognitive-behavioral therapy, and acupuncture.

In addition to the book, I have written much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington

 

“I started doing all of this because I read about it on your blog.”  Vernon is a college professor who had radical prostatectomy eleven months ago, who contacted me to tell his story, because he hopes it will help other men. “I didn’t hear much about this at all from my surgeon.”  Vernon is black, and he had aggressive prostate cancer. “Thank goodness, it was caught early, because I was getting my PSA checked.  My father and brother had it, so I started getting checked 10 years ago, when I was 40.”

When Vernon’s cancer was found, he had robotic prostatectomy. “It was a no-brainer, because I was just 50.  But now that the cancer is gone – my PSA has been undetectable at three months, six months, and now I’m moving to every six months of follow-up blood tests – I am working hard to get the rest of my life back.  I’ve got a lot of living to do!”

It is Vernon’s nature, as he says, to do research.  So that’s what he did:  he got online and started reading everything he could about recovery of urinary continence and sexual potency after prostatectomy.  “I started taking Cialis, not just as needed but every day,” he says.  He asked his doctor for a prescription, and talked to him about taking “more than the FDA-approved dose: 20 mg a day, every day.”  His doctor said that this would be okay, since Vernon didn’t have any other health problems.  Why would Vernon want to take it every day?   “Because I read that it may help prevent loss of penile length and keep the penis vascularized” (maximize blood flow to the penis).  Has this helped?  “I’m not there yet, but I’ve definitely seen improvement over time,” he says.  “At first, I was pretty discouraged, because I had no erections right after the surgery.  Then, three to four months in, I started getting a partial erection, maybe 30-40 percent of what it was, and now it’s up to about 70 percent when I wake up in the morning.”  It still is not enough for penetration, he believes, “but it’s getting there.”

This hasn’t stopped Vernon from returning to a sex life with his wife.  “Right now, I have to use the vacuum erection device (VED) and the ring (placed at the base of the penis like a temporary mini-tourniquet, to keep the erection),” he says.  “But it works!”  He has not tried injecting his penis.  “I just don’t want to stick a needle in my penis, but I’m becoming more open to the idea.  I also don’t want to get Peyronie’s,” a condition where the penis becomes less straight when erect; this is thought to be due to scar tissue.  “I am hoping that ultimately, erections will come back on their own,” he says.  “I’m just trying to help the process along.”

Penile stretching:  “I really did not want to have shrinkage,” Vernon says.  “So, based on what Dr. Trinity Bivalacqua said in your post, and my own research, I started using a vacuum erection device (VED).  I picked one that nurse at my urologist’s recommended.  But then I also read about this British VED that uses water, that was really marketed more toward making the penis bigger, not for recovery after prostatectomy.  I like that one better; I think it does a better job of improving blood flow. Plus, you can put warm water in there, as warm as you can stand, so that has a vasodilatory (increasing blood flow) effect, as well.”

“I’m really glad I started using that as early as I did, about three weeks post op,” he continues.  “When I first started, it hurt like hell.   Everything was kind of scarred; it almost felt like I was breaking scar tissue up.  That got better within a week or so,” and he could tell the penis was beginning to stretch back to its former length.  “Then,” after further reading on the internet, “I got the Viberect,” a device “designed to help you get an erection by vibration.  I think it helps.  It seems to help more over time.  I think the important thing is just — if you think about how sex works — it’s mechanical stimulation that gets translated to the nerves.  So it makes sense that if you did something that would mechanically stimulate the nerves, you would help promote the function.  It’s kind of like using a muscle to make it stronger.  It’s not like a pleasure device; you feel like a buzzing sensation.  I just keep telling myself that I won’t be doing this forever, and when I’ve recovered, I can just have sex with my wife like always.”

In the meantime, “I have been able to have intercourse with my wife using the VED and the ring,” he reports.  “Once, I used the looser ring and it was not tight enough to keep the blood flow, so it didn’t work.  But with the tighter ring, it worked!  It was successful.

“The one thing nobody tells you,” he adds, “is the whole orgasm thing.  It’s different.  It’s not the way it used to be.  Before, it was like this buildup, and then this release. There’s none of that. It’s more like … you miss the appetizer and the main course, and go straight to dessert, but I can see how women have multiple orgasms, it seems like it’s all in the brain.  It’s kind of bypassed all the hardware down there. You don’t get that pent up feeling.  There are contractions but they’re not really doing anything,” and the climax is “dry” ejaculation, because there is no semen.   Vernon doesn’t want men to be discouraged by this:  “It’s still wonderful.  It’s just different.”

What about incontinence?  “Everybody said, do Kegels, do Kegels,” Vernon says.  “The problem there is, I felt I could not sense the anterior part of the pelvic floor, the part I could contract.  I could feel it contract in the back, toward the anus, and the middle, toward the scrotum. I could not feel the front.  Then I read that men who lack sensation in the proximal urethra are the ones who have more trouble with incontinence.  So I thought, how can I contract something I can’t feel?”  Once again, Vernon turned to the internet, “and sure enough, there were devices marketed for male urinary incontinence that involve patches and electrical stimulation — basically a TENS unit.  I thought, if that can do what I can’t and it wasn’t too expensive, then why not?  So I bought it from England.”  This particular unit “comes with two options.  One is an electrode you put in at the anus with some lubricant, and the other are patches, and to get the anterior part, you basically put a patch just above the penis in the front and behind the scrotum in the back, or the patch above the penis in the front and the rectal probe.  The device has programs for urge, stress, or mixed, so I used the one for stress incontinence.”  The key seems to be in repeated use, he adds.  “If I don’t do it for a while, I will use the rectal probe, but ordinarily, I can just use the perineal patch and the suprapubic patch.  If I keep doing it, it works, and I hardly have any drips.  If I use it regularly, I am able to do a Kegel in the front, but if I don’t do it, I lose the sensation there, and I have to start back up again.”

Vernon has his eye on the prize of a cancer-free life that one day, will be pretty much back to normal.  “I’m optimistic.  It’s just slow.  From what I’ve read, nothing’s able to speed up the recovery.  I’m just trying to stack the deck in my favor. On the other hand, I feel like I’m young and I’m lucky.  I had aggressive cancer, and it was caught early!  Thank God!  I want to live!  I feel like I’ve been given the gift of life. I just want all of my life back.”

In sharing his story, Vernon hopes that if you are facing prostatectomy, you will be inspired to be proactive about your own recovery, so you can get your life back, too.  Note:  This is just one man’s approach.  Talk to your doctor about the best approach for you.  That said, if you’re not getting the answers you need, do your own research.  Many medical centers have experts on sexual health and urinary incontinence.  This is their job.  Please don’t be stoic and just wait for it to get better on your own.

Update, eight months later:  Vernon has embraced the needle.  “I was scared of it, but I went to see a urologist who is a sexual health expert.”  (Note: Your urologic surgeon is probably not going to be the person who helps you with this part of the journey.  It’s a different fellowship, and a different area of expertise.)  “In the office, the doctor gave me an injection to cause an erection.  He said my response was so good, I might be able to get away with half the usual dose!  It is so much better than using the VED and the ring.  There’s no comparison, in fact.  I hated the ring; it was painful and difficult to have intercourse.  What a difference!  Our sex life is great now, and the best thing is, I am hoping I won’t need this forever.  The whole point of the injections is to improve blood flow.  Already, my erections without the injection, which aren’t yet strong enough on their own, are noticeably better.  My doctor said to think of the injections as a bridge back to normal, and I think he’s right!  In the meantime, it’s a minor inconvenience and totally worth it to be able to have this part of our lives back.”

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask.  I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease.  Many doctors don’t do this, so it’s up to you to ask for it.

©Janet Farrar Worthington

 

Please Read This Before You Go Under the Knife.  Nobody thinks a prostatectomy will be a breeze; if anybody tells you that, take it with a big old mental grain of salt.  Even with the best surgeon in the world, there will still be some incontinence and erectile dysfunction.  But ideally, with exercises, biofeedback if necessary, and penile rehabilitation, these should be temporary, and you will be cancer-free and enjoying your life again soon.

The complications from prostatectomy ought to be minimal.   But often, they are devastating.  A bad surgeon can ruin your life.  

So please hear this advice and take it to heart:  Find the best surgeon you can.  Get it done right.

Radical prostatectomy is a very difficult operation.  It takes not only skill, but the kind of expertise you get only after being involved in a lot of procedures, first from the sidelines as a doctor in training, and then learning how to do it meticulously with the guidance of an expert surgeon.

The very best prostate surgeons specialize in the prostate.  That’s often all they do, and they do a lot of these procedures every year.  As Patrick Walsh and I said in the book, you don’t want to be part of the learning curve.

Another point:  Because there are so many bad surgeons out there, you can’t trust everything you read on the internet or from hospitals’ propaganda.

I would dearly love to weed out the bad surgeons, so they stop doing procedures they aren’t skilled enough to do.  Until that happens, well, this is your one shot at this.  Do your due diligence.  How can you find the right surgeon?  Here’s a checklist I developed and wrote about for the Prostate Cancer Foundation’s website, with the help of three experts.  Please.  Take the following things into consideration before you go under the knife:

  • Find a high-volume center that does a lot of these procedures. Often, this is an academic medical center.  An added benefit here is that if they do a lot of these, and do them well, then everyone is going to be better at helping you. The nurses know how to take care of recovering prostatectomy patients, and there is a wing or set of beds just for those men – and not also appendectomy or hysterectomy patients, whose post-op needs are very different.  How do you find a high-volume center?  Edward Schaeffer, M.D., Ph.D., Chairman of Urology at Northwestern University, says, “This can be hard, but I always refer patients to two websites that can help.”  One is the National Cancer Institute’s website, which designates “cutting-edge cancer treatments to patients in communities across the United States.”  http://www.cancer.gov/research/nci-role/cancer-centers/find And the other is a website showing National Comprehensive Cancer Network-designated cancer centers.  “NCCN Member Institutions pioneered the concept of the multidisciplinary team approach to patient care and lead the fight against cancer as they integrate programs in patient care, research, and education.”  NCCN writes the guidelines for how to screen and care for all types of cancers, including prostate cancer.  That website is:   https://www.nccn.org/patients/about/member_institutions/qualities.aspx
  • Look for a place where different specialties work together. Top centers have multidisciplinary teams – experts from different specialties including urology, radiation oncology, medical oncology, and pathology – working together on prostate cancer. Some men are perfect candidates for surgery; others might do better with radiation, and if you are one of those, you need at least to speak with a radiation oncologist before you decide on surgery. Other men need to talk to a medical oncologist, as well.  Prostate cancer is a complicated thing, and there is no “one-size-fits-all” answer for every patient.  With the multidisciplinary approach, you get the opinion of a team of experts, not just one, and the benefit is a more thorough and thoughtful approach to your treatment.
  • Ask the surgeon about results: Does he or she keep results? For how many years?  The best surgeons, like Patrick Walsh at Johns Hopkins, follow their patients for life – so they know, 25 years after the fact, whether the PSA is still undetectable, whether there was any incontinence, whether erections returned on their own or with help from medications or other treatments, etc.
  • Then double-check. “To be honest, in my experience some surgeons lie,” says urologic oncologist Trinity Bivalacqua, M.D., Ph.D., at Johns Hopkins, “and it’s hard to determine when someone is not being truthful.  The most important factor is the reputation of the institution and the department, as well as the surgeon.  One thing that helps is asking the surgeon to provide you with names of his or her patients who have agreed to speak to other patients about their experience.  This is very helpful, and will show that the surgeon has happy patients, cares enough to put this together, and knows the importance of a large support network to help a cancer patient decide what’s best for him.”
  • Are any of the surgeon’s patients willing to talk to you?  You can hear it from the “horse’s mouth” what recovery was really like.
  • How many radical prostatectomies has the surgeon done? The answer should be in the hundreds.  If it’s something like “several,” do not walk away – run!
  • Ask more than one doctor to recommend the best prostate surgeon in your area. (Note: Some doctors are in practice groups, and recommend the specialist in that group. This is why it’s good to ask different doctors in different practices.)
  • Beware of the reviews or ads on the internet. “It is unclear to me who actually goes to these sites and makes the comments,” says Schaeffer.  Maybe it’s the patients; maybe it’s a buddy of the doctor putting in a rave review to get the number of five-star listings up.  Or maybe it’s a disgruntled colleague, or a competitor hoping to drive business away from that surgeon.  Who knows?  For the most part, says urologist Stacy Loeb, M.D., M.Sc., at New York University, “Online reviews are totally unreliable, so I am hesitant to tell men to rely on them.”  Research has shown poor correlations between online reviews with outcomes, she adds, “so I am wary to recommend something that could be misinformative.  Speaking to other patients and local doctors is a much better idea.” Loeb also recommends that you check with prostate cancer support groups in your area, and ask these men about their own experience and advice on a surgeon. “The internet is full of false accusations and glamorization of surgeons and the hospital or department,” says Bivalacqua.  A lot of hospital websites, he adds, “advertise something that is often not present or real.  I know this is a sinister way of thinking about things, but it’s the reality of our society and medical profession.”
  • And finally, don’t worry about offending the doctor with questions or by getting a second opinion. You don’t get to be a surgeon without being something of a tough cookie.   People ask for second opinions all the time.  Patients ask questions all the time.  You are paying the doctor, not the other way around.  (Note: That doesn’t mean you should be rude or disrespectful; it just means you shouldn’t feel intimidated or like you are being a bad guy simply for doing your homework.)  If the situation were reversed, do you think your doctor would not make every effort to find the best possible surgeon?  It’s your prostate, it’s your recovery, it’s your life.  You don’t want to be one of those guys saying afterward, “My surgeon was not very good.”

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask.  I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease.  Many doctors don’t do this, so it’s up to you to ask for it.

©Janet Farrar Worthington

 

If you’re a young man diagnosed with prostate cancer, maybe your first thought is, “Am I going to die?”  And then, “What’s the best way to treat this?”  And then:  “Will I ever get my life back?”

And here’s the thing:  By the time they get to that third question, a lot of men get complacent or worn out, or discouraged.  They accept the new normal.  They figure:  “The cancer’s gone.  Yay!  I should just be happy for that.”

And if the cancer is gone, thank goodness!  What a blessing!  There are many men who would give anything to be in your shoes.  But what if you’re in your late forties, or early fifties, with decades ahead of you?  Is it wrong to want more?

Hell, no!  Listen to these words:  It is not wrong to want to have your old life back after treatment for prostate cancer.

So, if you have had surgery, and you’re having persistent incontinence, talk to your urologist.  There are lots of things you can do, including biofeedback, Kegel exercises, or surgical options that we will discuss in another post.

If you are having persistent trouble with sexual recovery, there’s help for you, too.  A lot of men, once their cancer is cured, are basically turned loose by their urologist: be free, and enjoy your life.  But they need extra help, which starts with penile rehabilitation.   We have discussed that here and here.  Options include pills (there are several, including Viagra and Cialis); penile injections; a vacuum erection device; and a penile prosthesis.  In this post, Johns Hopkins urologist Trinity Bivalacqua says:  The prosthesis is “just phenomenal.  Pills like Viagra are popular, because they’re easy to take, and when they work, they’re great.  But the next most popular option is the penile prosthesis, and it works as advertised 100 percent of the time.”  I also commented in that post that “It also looks 100 percent natural.  It’s not some cyborg penis.  For all practical purposes, it is your actual penis – just more reliable.”

But I’m not a guy, and I’m not a urologist.  What do I know?  Well, I’m proud to say, I now know Serge Thomas.  Although I have heard about penile prostheses for years from urologists, I have never talked to anyone who actually has one.  Serge is not only willing to talk about it; he’s written a book.  It is funny, very candid, and optimistic.

“Out of the Blue”

Briefly, Serge, who lives in Michigan, was diagnosed in 2012 at age 52.  He had no family history of prostate cancer; the diagnosis, he says, “came out of the blue,” and the cancer wouldn’t have been found at all if he hadn’t been seeing a urologist for low testosterone treatment.  The urologist insisted that Serge get his prostate checked every year.  In 2011, his PSA had been 1.9; at his next visit to the urologist, it was 3.8.  Two weeks later, another test came back at 4.1.  “This fit all the criteria for a serious situation that shouldn’t be taken lightly,” Serge recalls.  “Well, I decided to take it lightly,” and he spent a month “resistant and in denial.  This could not be happening to the ‘macho-me’!  This would pass, and the reading would eventually return to a normal range.”

Serge’s thoughts will probably seem pretty familiar to any man who has gone through the diagnosis of prostate cancer:  “You know us guys and our manhood.  Nothing can get in the way of it and nothing will compromise it.  And the prostate removal thing:  just NO!”  Better not to know, he decided, because if there was cancer, “my choice is a life with a good and functioning prostate; not life without a prostate, because … if I lost it, it’d mean that I’d lost my manhood, too.  My wife would notice and nothing in our life of intimacy would be the same.”  Serge decided “to stay the course, without any significant intervention or surgery.”

Then his wife, Lisa, found out and nixed this plan.  Serge got an ultrasound biopsy immediately.  Then, before he even found out the results, he nearly died – from sepsis, a rare complication of transrectal biopsy.  He was hospitalized with a 104-degree fever and terrible chills.  A few days later, his urologist came to his hospital room to deliver the biopsy results:  Serge did, indeed, have prostate cancer, Gleason 3 + 4.

Serge did his due diligence on what to do next.  He decided on surgery, then did further research to find an excellent surgeon – one with expertise and a proven track record in performing radical prostatectomy.   He chose Mani Menon, M.D., of the Henry Ford Health System in Detroit.  Before surgery, a therapist on Menon’s team met with Serge to talk about penile rehabilitation after surgery, “the goal being to restore organically stimulated erections” – never a problem before, Serge notes.  “I was known to get erections at three years old, while I was watching Elizabeth Montgomery as Samantha on ‘Bewitched.’  So at this time, my known organic erections were working for the past 49 years!”  The therapist told him that the rehabilitation would begin with a low dose of Cialis.  “She explained that it is extremely important to keep a steady supply of blood flowing to the penis and that this would be the initial start of penile rehabilitation.”  Then, at two weeks after surgery, “we would start with penile injections, the goal of which is to keep up with the regular engorgement of the penis, as this would lead to eventual organic erections,” which would occur “within two years of the start of the injection protocol.”

Serge had confidence in Menon and his team, and this “gave me a peace and confidence to move forward, no matter the outcome and its consequences.”  He spent a lot of time in reflection during this period, and came to come conclusions, particularly: “Finding the most special person in my life, and entering marriage with her held some implicit guarantees that I was not going to give up on.  In our marriage, I effectively warranted my love, friendship, care, and support in all forms and whatever I would be capable of physically, intimate and otherwise.  I was fully intending on delivering on each one of those commitments.”

What if his erections never came back?  Lisa told him it didn’t matter, that “sexual intercourse is only one form of intimacy, and that we have many ways to be intimate.  In fact, she said that it wouldn’t matter to her if we had intercourse ever again.”

Serge didn’t know what to think of this:  “First, I’m thinking that this is some form of compliment – or no, in fact, it is the opposite of a compliment, even an insult! That it’s of no consequence whether we have sex/intercourse again?  Whoa!  A lot goes through a guy’s mind in such a situation!”

Fast-forward a few months.  The surgery went well, and Serge recovered continence.  However, he was not so quick to recover erections.  The pills did not work for him.  “No benefit,” he says.  The injections, which he discusses in detail in his book, allowed Serge and Lisa to resume intercourse, and all was well for about six months.  Then the effects of the injection “became only marginal,” Serge recalls.  “In many cases, the erection would be like on half-power and inadequate for penetration.  I became exceedingly frustrated, while Lisa became exceedingly understanding.”  The therapist suggested that Serge switch to a different formulation, a “tri-mix” instead of the “bi-mix” he had been using.  The tri-mix not only caused terrible pain; it produced a four-hour erection.  The therapist told Serge that some men can’t tolerate the tri-mix, and advised him to go back to the bi-mix.

The Danger Zone

“We had sub-standard performance until I decided that if one injection doesn’t work, how about one and a half times the normal volume of the drug for the injection?  And if that doesn’t work, how about twice the normal prescribed volume of the drug?  I now had begun to operate in the danger zone.”  This strategy did work, “and Lisa and I were the beneficiaries of its working.”  But this resulted in priapism, prolonged four- and five-hour erections, including a nearly seven-hour one that resulted in a trip to the emergency room.  “I was like a crack addict,” Serge recalls.  “I wanted the sex and intimacy with my wife at all costs.  So what if I use a little more juice, I told myself. Wrong!”  In early 2014, Serge noticed that after the injections, his penis was “curved up and vertical.”  He had developed Peyronie’s syndrome.  “My God, wherever I moved, that thing was looking at me!”

After the year and a half of injections, the penile wall had built up scar tissue, “so when the erection occurred, it was constricted by the scarring and caused a pull and a curvature.”  His therapist advised him to stop the injections immediately, and referred him and Lisa to a sexual and marriage psychologist – who, in turn, referred him to Dana Ohl, M.D., director of male reproductive urology at the University of Michigan Medical Center.  Ohl told Serge that he was a candidate for a penile implant – a prosthesis.

Ohl said that by stopping the injections and moving forward with the penile implant, this would correct the curvature, allow him to regain the ability to generate regular and firm erections, and restore the level of intimacy with Lisa that he previously had enjoyed.

Serge asked, “How does it work?”  Ohl told him that two polymer tubes would be inserted into the cavernous areas on both sides of the penis.  A small reservoir of saline would be tucked in the muscle wall of Serge’s abdomen, and a ball-shaped pumping device would be placed in his scrotum, and whenever he wanted an erection, “you pump up the ball-shaped device in your scrotum.”  Afterward, “you depress a little button on one side of the ball-shaped pump device, and the saline flows back into the reservoir and the penis returns to normal.”  The model Serge would receive is called the Coloplast Titan.

“Does the thing ever wear out?” Serge asked.  “No, you’re good for the remainder of your life with this, assuming I do the surgery,” Ohl explained.  Serge felt an overwhelming sense of relief:  “Oh, my God, no more f—ing needles,” he thought, and then, with more enthusiasm than he had felt in two years:  “Yes!  Sign me up!”

Serge had the surgery.  The implant was covered by insurance – in large part, he says, because Ohl “sat in front of Congress and explained that reconstructive breast surgery after breast cancer is akin to a male having an implant after prostate cancer.  Out of pocket, it was 60 bucks for me.”

Off to the Races!

There was a six-week recovery period.  And then, as Serge puts it:  “It was off to the races!  What to say other than life is absolutely great?  Lisa and I were again making music.  To this day, over five years later, we are enjoying ourselves with regular, recurring intimacy of all forms.  I’m back in the game!  Actually,” he jokes, “the implant works so well, it would have been better to have it earlier in my life, like at 18 years old, and without the prostate cancer!”

This is why Serge is telling his story.  He wants to help other men.  But he’s doing even more:  through Dana Ohl, Serge learned about COP-MICH, a collaborative project between the University of Michigan Medical Center and the University of Copenhagen Medical School, to help obtain semen from paraplegic or otherwise injured men and “use it to help those men and their wives have children, which otherwise would be impossible.

“Dr. Ohl had done such a great thing for me in restoring the physical intimacy in my relationship with my wife,” that Serge wanted to pay it forward.  “These teams on both sides of the Atlantic are giving husbands and wives the possibility of having children and growing families.”  Serge supports this project, and is also donating a portion of the proceeds from his book to COP-MICH.  “This is not only about a couple’s happiness in the bedroom; it’s life-changing.”  Because of the help he received, “I feel absolutely compelled to help them in any way that I can.”

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. You should start at age 40.  Many doctors don’t do this, so it’s up to you to ask for it.

©Janet Farrar Worthington

 

If you’re struggling with ED, you may be wondering whether the latest miracle cure is actually a miracle cure.  You’re right to wonder.  The world of treatment for erectile dysfunction (ED) is complicated; add in emotional stuff like frustration and hope, and it can be even tougher to figure out what to do.  And here’s this new approach that’s making – well, waves.  It’s called shockwave therapy.  You may have seen ads for it on TV or the internet.

Maybe shockwave therapy deserves all the hype it’s been getting, and maybe it doesn’t:  more comprehensive research is needed, and it has not been approved by the Food and Drug Administration (FDA) as a treatment for ED. 

The good news:  shockwave therapy is noninvasive, doesn’t require pills or pumps or injections, and it doesn’t seem to cause any harm.

However:  Despite what the enthusiastic commercials and Youtube videos say, it’s not clear how well shockwave therapy works for ED.   It’s also not clear which men would benefit the most; doctors can’t give percentages of real success yet, nor can they predict how long the treatment’s effects will last.  However, “the suggestion that it works on everybody is highly questionable,” says Johns Hopkins neuro-urologist and Professor Arthur Burnett, M.D.  I have worked with Arthur Burnett for more than 25 years, at Johns Hopkins, here at VJ, on various editions of the book and most recently, as part of my work writing for the Prostate Cancer Foundation’s website.   For all that time, he has been not only a world-renowned investigator authority on the science and medicine of ED, including ED after surgery or radiation for localized prostate cancer; he’s been a voice of reason and hope for thousands of men.

Burnett is also part of a panel for the Sexual Medicine Society of North America (SMSNA) that released a position statement in March 2019, cautioning men about shockwave therapy and other new treatments for ED that aren’t FDA-approved.  The statement also mentioned stem cell therapy, platelet-rich plasma (also called the “P shot,” or Priapus shot), and even amniotic fluid.  Without FDA approval, the SMSNA states, “the use of any novel therapy is considered off-label.

And yet, despite the lack of definitive medical evidence supporting its use, Burnett says, shockwave therapy is “being heavily advertised, a lot of urologists are very interested in this, and it’s caught on in a big way in South America and Asia as a treatment option for ED.”  In the U.S., shockwave therapy is being offered by a growing number of urologists, particularly in Florida.

What is it, exactly?   It’s low-intensity, extracorporeal shockwave therapy (Li-ESWT), “a machine that delivers acoustic signals and a shock to tissue, much like the lithotripsy machines used to treat kidney stones.”  The idea, Burnett says, is that “you can generate a mechanical energy effect on tissues, and have a potential benefit – stimulating angiogenesis (the growth of new blood vessels) in the penis, and stimulate local chemical factors in the tissues – growth factors, paracrine signaling (cell-to-cell communication), maybe even somehow activating stem cells.”

In other areas of medicine, shockwave therapy is used to treat problems ranging from diabetic foot ulcers to heart disease.   And “for the past few years, in the world of sexual medicine, there have been some studies and literature reports presented at national meetings on the potential role of this therapy in men with ED,” says Burnett.  “There’s a lot of buzz.”

The problem:  “It’s very controversial.”  Does it work? “That’s the big question.  There may be some evidence of a short-term benefit, probably in men with mild to moderate ED.  But the treatment settings, the outcomes – it all remains investigational.”

You might not get that bit of information from the commercials on TV and the internet.  “The ads are out there.  Doctors are buying these machines, saying, ‘Plop down your $2,500, and we’ll treat you.’”

In theory, shockwave therapy is “potentially restorative,” says Burnett, in that it “might regenerate erectile tissues.”  In animal models, shockwave therapy has shown some success.  However, he notes, “there is a lack of clinical trial evidence to support its effectiveness and long-term safety” in men with ED.   No study has determined the basic parameters: energy dosage, frequency, or duration of treatment.

Who knows?  It may turn out to be great — but again, probably not for everybody.  Shockwave therapy is “potentially an exciting new therapy in the world of ED management,” Burnett continues.  “But the best patients to expect a benefit from this have not been fully well-defined. The long-term success remains uncertain. People are thinking this is some sort of fountain of youth, or magical cure to correct their ED, but that has not yet been proven.”

What about ED after prostate cancer surgery?  The men most likely to be helped by shockwave therapy after prostatectomy are also the men who are most likely to benefit from pills such as Viagra: younger men whose erectile nerves have been spared, who don’t have cardiovascular problems or other diseases, such as diabetes, that can affect either blood flow or nerve function, or both.  “Men with more severe ED, men with significant diabetic or vascular disease-related ED, men who have very poor or nonexistent responses to the pills, probably won’t benefit from it.  These men should look at other therapies – the vacuum device, penile injections, or penile prosthesis surgery.

“The real truth is that we just don’t understand who should be using this. It seems safe; there are no obvious concerns about men having complications with it.  But patients should be informed that this may not be successful, and that it’s expensive.  To say, ‘Try it, because it might work for you, even though you already had ED before your radical prostatectomy,’ creates a false hope, and that’s not good.”

Burnett and colleagues on the SMSNA concluded that until there is FDA approval, the use of shockwaves or any restorative therapies for the treatment of ED “is experimental, and should be conducted under research protocols in compliance with Institutional Review Board approval.”  Men considering such therapies should be fully informed “regarding the potential benefits and risks. Finally, the SMSNA advocates that patients involved in these clinical trials should not incur more than basic research costs for their participation.”

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

© Janet Farrar Worthington

 

 

 

Just when everything should be getting better – you’ve been diagnosed with prostate cancer, gotten curative treatment with surgery or radiation, and now you’re looking forward to getting your life back – there’s another bump in the road: ED (erectile dysfunction). You don’t need that!

Darn it, here’s yet another “reluctant brotherhood” – a club, like that of prostate cancer, that you never wanted to join. Take heart: You’re not alone, and it’s going to get better.  But your road to success may not be a little blue pill.

Maybe you’re like a lot of men who, before treatment, envisioned themselves boldly striding forward toward recovery of potency – perhaps temporarily using Viagra, Cialis, or another pill in the class of PDE5 inhibitors as a crutch until erections returned on their own.

Unfortunately, for some men, these might as well be sugar pills. They just don’t work as promised. And instead of striding forward boldly, they find themselves making uncertain progress like the Wayfarer, a character painted by Renaissance artist Hieronymous Bosch: a poor guy just trying to get somewhere down a troubled path.

For too many men, the road back to potency is a lot more difficult, confusing, and frustrating than it has to be. This makes me mad, because I have talked to men and their families who just don’t need another health burden to deal with. It makes Johns Hopkins urologist Arthur Burnett, M.D., mad, too, and he is doing something about it.  

Burnett is a surgeon-scientist, a neuro-urologist and pioneer in the understanding of erectile dysfunction (ED). His research on the biochemical mechanisms of nitric oxide in erectile tissue contributed to the development of Viagra and other PDE5-inhibiting drugs.

Burnett is also a world-recognized authority on treating the problems in sexual function that can occur after surgery or radiation for prostate cancer – and there are several. “ED is one thing,” he says, but it’s not the only potential roadblock to sexual recovery. “Some men also develop scarring in the penis, a condition known as Peyronie’s syndrome. Some men have climacturia, where they may release a little urine during sexual stimulation or climax, so that’s problematic. There’s a whole host of things that can go wrong,” and all of these problems can be treated.

By far the most common problem after prostate cancer treatment is ED, difficulty achieving or maintaining a penile erection. The American Urological Association has just revised its guidelines on treating this. Burnett, who co-chaired the committee to change these recommendations, says they were brought about by an evolution in thinking. “Treatment should be based on shared decision-making,” he states. “Patients should have the opportunity to have a full discussion on ED with their doctor – the variety of options to treat it, the likelihood of success – and options should exclude those that may have contraindications,” that aren’t recommended in their particular case, or that probably won’t help them.

Makes sense, right? And yet, Burnett has seen thousands of patients from all over the world who have not had such a discussion with their doctor, or whose doctor has continued treatment that not only isn’t working, but never was going to work.  

The old model – the one that emerged close to two decades ago with availability of PDE5 inhibitors – had well-defined steps to follow.   “We initiated therapy along the lines of first line, second line, and third line,” explains Burnett.   The first-line treatment was the pills, “the least invasive form of therapy.”

Erection is a vascular event; it involves blood flowing into the penis, being held inside there, and then flowing back out. The nerves that are responsible for erection lie in fragile neurovascular bundles on either side of the prostate, a discovery made by my co-author on the books, Johns Hopkins surgeon Patrick Walsh, M.D., who found that if men had one or both bundles preserved during prostatectomy, it was still possible for them to recover erectile function. However, he reported that patients who were older or who had one bundle were not always successful in recovering erections, and even men who had both bundles preserved, if they had vascular problems or other health issues, were more likely to have trouble.

Burnett has spent years studying these nerves, and he has found that the surgery itself – the traction on the nerves, and the stress of having an invasive procedure – can damage them. Often they recover, but sometimes they don’t. So even if, theoretically, a man should be able to produce an erection, it’s not guaranteed.

Many men – even though their nerves have been spared – “are not likely to respond to PDE5 inhibitors,” Burnett notes. These patients, particularly men with significant vascular disease, “need to be counseled in realistic terms on their likelihood of responding to these pills, balanced with their preferences, to try to get to the most effective therapy sooner rather than later,” says Burnett.   “Vacuum pumps and injections have traditionally been second-line treatments, but perhaps that should just be put on the table up front. Even penile prosthesis surgery should be put on the table early on for patients with more severe forms of ED. If men are already struggling with erections before surgery, after radical prostatectomy, they’re going to have even more trouble, and more frustration.” In other words, if you were relying on Viagra before treatment, the pill probably isn’t going to have the same effect that it used to.

“I see patients in my clinic who might best have been fast-tracked to a penile prosthesis early.” Burnett even sees men who had “non nerve-sparing” surgery – that is, both neurovascular bundles were removed (which is the right thing to do if cancer has reached these nerves) – who have been “done a disservice,” by being offered medicine that is simply not going to work for them. “Oral therapy depends on a necessary degree of intact nerve function,” Burnett explains. In other words, the pills augment what the nerves are already trying to do. “Their doctor says, ‘Let’s just try PDE5 inhibitors,’ but there are no nerves for penile erection. They start the first-line therapy. Then it’s, ‘Let’s wait another six months; keep trying.’” And that is not acceptable, in Burnett’s opinion. “We have to understand how these different therapies work, think about the clinical presentation of the patient, the variables that may impact his erectile physiology.”

Just having “all guys get first-line treatment, no matter what, and seeing how they do, then ‘maybe we’ll consider vacuum pumps and see how that goes for several months, and if it doesn’t work, we’ll consider injections’ – that’s not good enough. “It’s a much more practical model we’re evolving, one that’s focused on the patient’s desires and what is most likely to be effective.”

Make no mistake, Burnett adds, “if the patient has undergone a good-quality nerve-sparing radical prostatectomy, we should give his nerves the opportunity to recover function,” and not just jump to the third-line treatment, the penile prosthesis, right away. Nerves can continue to recover and erections can continue to improve even as long as four years after surgery. But that doesn’t mean a man should just stoically wait to resume his sex life until the day he achieves a decent erection, either. Maybe try a PDE5 inhibitor and a vacuum erection device, for instance.

Why do so many doctors insist on starting with the pills? Maybe they don’t take the time to find out how well the man’s erections were before surgery; maybe they don’t take heart disease or other health problems (again, some illnesses can hinder blood flow to the penis) into consideration – or maybe, as Burnett suspects, “they think, ‘the pills don’t have much of a negative impact,’ even though the patient will be frustrated for months.” Or maybe “they think, ‘More invasive therapies carry risks. Let’s see how he does,’ and they don’t consider that his sexual dysfunction can have a real impact on his health and wellbeing.” Too many doctors, he adds, “just pat ‘em on the back and say, ‘Things will be fine; you’ll be all right.’”

            But months and months of an unrestored sex life can be demoralizing, Burnett continues. “That’s why I think it’s more humane and appropriate to proceed with effective management of patients – not just treating ED by recipe. If somebody really is not predisposed to do well with PDE5 inhibitors, why push that on him?”

Similarly, injections work very well for some men, but not for others; men who have a large belly or who have poor hand-eye coordination, for instance, have difficulty. Other men simply “don’t feel that doing a needle injection is something that appeals to them. Why would we tell a man that’s all he’s got, instead of referring him to a penile prosthetic surgeon?”

Vacuum erection devices also have their pros and cons. “On the pro side, it’s noninvasive, and it’s fully under the control of the patient,” says Burnett. “But on the downside, it’s cumbersome and mechanical, it involves trying to draw blood into the penis, there’s a constriction band, it feels cold, and it can feel unnatural. Just put it on the table, and try to figure out what will work for one patient at a time – not some rote approach.”

Most men who get a penile prosthesis are happy with the result, says Burnett. “The erection feels natural, and they wonder why they didn’t get it sooner.” Why don’t more men with severe ED choose this option? “Part of it depends on how we in the medical community have presented it to patients.” Many of Burnett’s patients come to him after years of feeling frustrated with the first- and second-line treatments. “All too often, I hear patients say, ‘My internist said never get a penile implant; they get infected, and mechanically they don’t work.’ That’s unfortunate that this is what they’re being told.” In the 1970s and 1980s, penile prosthetics were not as reliable and were more prone to malfunction, but they have vastly improved since then.  

“Just like every other option, the prosthesis has its pros and cons. There is a 1 percent infection risk with prosthetic devices.” Burnett notes that doctors who are “infrequent implanters” tend to have higher infection rates, while “for expert surgeons, high-volume implanters, the infection rate is very low.” Burnett implants 80 or more penile prostheses a year, and “if I see an infection even once a year, it’s very rare.”

Patrick Walsh has told his patients for years, “if there’s a will, there’s a way,” and if they want to have a sex life after surgery, they can. Burnett, Walsh’s longtime colleague, adds to that message of hope from the doctor’s standpoint: “Never give up on a man who wants to preserve and restore his opportunity to be intimate with his partner.   We should try to explore options to help him achieve that.”

There’s one other important message here: Watch out for shysters. “Don’t waste your time or money with over-the-counter treatments or supplements,” says Burnett. They don’t work. Also, be very suspicious of high-cost experimental treatments. “The Sexual Medicine Society has taken a stand about some of this, and in our new ED guidelines for the AUA, we make it very clear that some things are investigational and require further evidence to show that they work.” These include shock wave therapy, stem cells, and platelet-enriched plasma injected into the penis. “Guys are being told, we’ll give you a couple of shots, and you’ll be fine. They pay out of pocket – $10,000 for as yet unproven therapy. It’s reprehensible, people out there trying to exploit these men. It is really terrible.”

It’s particularly terrible when there are medically proven approaches that Medicare and insurance will pay for that can actually restore a man’s sex life.

 

How Common Is ED After Surgery or Radiation?

 

Answering this question is more difficult than you might think, for two reasons: First, every surgeon and radiation oncologist has different results, based on expertise and the number of times the doctor has performed the procedure. So that’s one variable. The other variable is huge – and that’s your personal health. Start with the SHIM score, which is based on a few simple questions. You must be honest here. No one else will see these answers but you and your doctor.

After surgery: “In general,” explains Burnett, “erections are temporarily lost in many men who have a radical prostatectomy. Even with nerve-sparing, the nerves can be traumatized.   It takes a while for these nerves to recover. Although men may have some sporadic erections, it is very common for men not to be able to have consistent erections during the first nine to 12 months after surgery, without help.”

In men who are able to be sexually active without the help of a PDE5 inhibitor before nerve-sparing surgery, the potency rate after surgery gets better over time. “The potency rate at six months is different than at 12 months, and it’s even better at 24 months,” says Burnett. “Most men who had nerve-sparing surgery are going to recover erections in the second year.” Over the long term, he continues, “probably 80 to 90 percent of men who have pre-operative erections have the potential to recover erections without PDE5 inhibitors – if they have no other co-morbidities.”

This is the key. Co-morbidities are other health problems that could affect blood flow – particularly, blood flow to the penis. Major risk factors for not recovering erections, even if you have nerve-sparing surgery, include being a cigarette smoker (cigarettes are vasoconstrictors; they cause your blood vessels to contract); having diabetes, and having cardiovascular disease. There are other conditions and medicines that can affect erections, as well; this is why you need to have an honest discussion with your doctor about your current health and sexual function before treatment.

What about after radiation treatment? It’s kind of the opposite situation. “Unlike surgery, where you have a major loss and then you recover, with radiation you’re pretty much fine and then many men tend to lose erectile function over time,” says Burnett. For these men, PDE5 inhibitors may help. “As many as 50 percent of men who undergo radiation experience a general decline after two or three years – but for the first two to three years, men do not experience any true erection impairment.” Unless, of course, they were already having problems before treatment. The honest SHIM score is important here, too, and so is the discussion of any risk factors that you may already have with your doctor.

Note: None of this means that sex is impossible after you have surgery or radiation treatment for prostate cancer. If you want it, you can absolutely have it, Burnett says – but you may need more than PDE5 inhibitors, especially if you are already experiencing some ED before treatment.

False expectations are cruel. “Patients need to recognize if they aren’t the optimal guy to fully recover potency after surgery without any help,” says Burnett.   “Today, I had a 56-year-old professional athlete in my office, who had a perfect SHIM score and stage T1c cancer.” This man is highly likely to have full recovery of erections after surgery, because his cancer is minimal, and his cardiovascular system is in great shape.

But another man with that same stage of cancer who is diabetic and a smoker might not have such an easy recovery of potency.   That man can still have a full and wonderful sex life, Burnett says, but it might require a penile prosthesis. Knowing this before treatment could spare that man months of frustration.

 

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington

Is your doctor squeamish about testosterone replacement?  Many are; in fact, to many doctors, the idea of testosterone replacement has ranked right up there with playing with fire. They worry that men will get burned – that increasing a man’s testosterone will make him more susceptible to prostate cancer. They worry about this because the mainstay of treatment for advanced prostate cancer is to do just the opposite – to shut down testosterone, and cut off the supply of male hormones to cancer cells.

But there’s good and surprising news: Boosting low testosterone doesn’t seem to raise the risk. In fact, it significantly reduces a man’s risk of getting aggressive prostate cancer.

Before we get carried away and say, “Extra testosterone for every man!” and run around tossing out gel patches, pills, and shots, we need to talk about what this actually means.

Let’s look at the study, recently published in the Journal of Clinical Oncology. In an international effort, scientists from New York University and Sweden analyzed the health records of more than 250,000 men on several health care registries in Sweden, including the National Prostate Cancer Register. There were 38,570 men who developed prostate cancer between 2009 and 2012, and 284 of them were on testosterone replacement therapy (TRT) before they were diagnosed. The investigators compared those men with 192,838 men who did not have prostate cancer, 1,378 of whom were on TRT.

What they found completely up-ended their hypothesis that giving replacement testosterone might be risky. “We found no relationship between the use of testosterone and the development of prostate cancer as a whole,” urologist Stacy Loeb, M.D., the study’s first author, told me when I interviewed her for the Prostate Cancer Foundation’s website, pcf.org. Even better, “we found that long-term use (more than a year) of TRT is associated with a much lower risk of aggressive cancer – a 50 percent lower risk.”

Testosterone actually lowers prostate cancer risk? Well, it does for the men who don’t have enough of it to start with. The men in Sweden who were on TRT, the investigators believe, actually need to be on it, and are prescribed it by their doctor. That’s not always the case in the U.S., where it’s common to see TV ads telling men that if they’re tired and have a low sex drive, they may have “Low T,” and offering prescription help.

So what we’re talking about here are men with below-normal testosterone who take medicine to get their testosterone level back up to normal range. “There are some interesting tie-ins to this,” says Loeb. Previous studies have shown higher rates of high-grade prostate cancer in men who don’t produce enough testosterone, “so it’s definitely a possibility that restoring the testosterone to the normal range could prevent this from happening. ”

In the study, researchers noticed an initial bump of men diagnosed with prostate cancer soon after they started TRT. However, these were low-risk cancers (easily treatable; in fact, many low-risk cancers can safely be treated with active surveillance), and Loeb believes the reason they were diagnosed at all was most likely because the men had received prostate cancer screening when they started the TRT.

How do you know if you have low testosterone? The symptoms, just as the TV ads claim, include fatigue, low libido, and decreasing muscle mass. “But a man should never just start taking a testosterone supplement just because he has those symptoms, because a lot of other diseases can mimic low testosterone,” notes Loeb. And if you have erectile dysfunction (ED): “You’re better off taking a medication such as Viagra, Levitra or Cialis. A lot of men come to the doctor thinking they want to be on testosterone. They’ve seen the direct-to-consumer advertising, and they just want it. But that doesn’t mean it’s the right solution for them.”

However, Loeb adds: “Don’t be afraid to supplement your testosterone if it’s low. There are certainly risks to having a low testosterone level for years; it can affect your cardiovascular system and your musculoskeletal health.” And this new study suggests that raising that testosterone level back up to where it should be may even reduce your risk of getting aggressive prostate cancer.

This research has raised new questions, including:

What about men with low testosterone who have been treated for prostate cancer and are presumably cured? Is it safe for them to go back on testosterone? “Our study did not include men who already had a diagnosis of prostate cancer. These men should be evaluated on a case-by-case basis,” says Loeb.

Why do low levels of testosterone lead to aggressive prostate cancer in some men? And could restoring normal levels of testosterone mitigate this risk? “We have a lot more work to do to understand the implications of these findings.”

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington