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Prostate Cancer Treatment and Erectile Dysfunction

Take Back Your Sex Life! Here’s How to Make it Happen.  It’s the side effect that men fear most: Erectile dysfunction (ED) after surgery or radiation treatment for localized prostate cancer. As urologist Patrick Walsh, M.D., the great Johns Hopkins surgeon and my coauthor on several books about prostate cancer, always says: The first thing is to cure the cancer. Second is to preserve urinary continence. ED is third, because there are many ways to restore sexual function.

You deserve to be not only cancer-free, but to have all your parts in working order. So, if you’ve had a radical prostatectomy or radiation therapy for prostate cancer and you’re having some ED, take heart! This doesn’t mean that your sex life has to be over!

But a big part of this is up to you. If you’re having trouble and you don’t say anything, hoping for the best probably isn’t going to cut it. Ask your urologist for extra help. If you don’t get it, find another urologist.

I recently interviewed Trinity Bivalacqua, M.D., Ph.D., the R. Christian B. Evensen Professor of Urology and Oncology at Johns Hopkins, for the Prostate Cancer Foundation’s website (you can read more at pcf.org.) Here are some key points he wants you to know.

First: A lot of urologists don’t give their patients the most accurate picture of what to expect after prostate cancer treatment. There may be several reasons for this: Maybe they don’t want to admit that their results aren’t that good, or they don’t want to discourage patients from getting their prostate cancer treated by worrying them about their future sex life. We’ll get to some of that in a minute.

Second: Way too many men suffer in silence. These men – leaders at the office or in the community, respected, take-charge, tough guys – don’t ask for help. They push sex over to a quiet corner of their lives, and they’re miserable, because they assume that ED is a done deal. It’s their fate. Some things are just not meant to be, they sigh.

They give up.  They tell themselves that this is how it’s always going to be – partial erection, or no erection, forever.

Come on, men: This is rehab. If you had trouble walking after a car accident or a stroke, you would accept that it’s a step-by-step process to get you back on your feet. Maybe you’d start with a wheelchair, but graduate to a walker, and then a cane. You would understand this. It would make sense to you.

It’s the same thing with your penis. There are steps. You can escalate.

Don’t give up. This is practical stuff here. If your doctor is not telling you this, print the article and take it in for your next appointment. Ask for help. If you want this to happen, help make it happen. Don’t give up.

And partners: Give the guy a break. Have some empathy. Yes, it’s frustrating for you, and it will take a lot of patience and encouragement on your part, but keep your eye on the prize: long-term success. This man just beat cancer. With your help, he can get all of his life back. It’s not going to be this way forever. Recovery of erections after surgery can take a long time – even years – to return fully. In the meantime, there are many options here. Hang in there, people.   You’re not alone.

Rehabilitating Your Penis

Will your sex life be the same after surgery? The absolute honest answer is, probably not, or at least, not for a while. But the other absolute truth is just as important: You can have a good sex life after surgery.

It’s essential to know these two facts, because a lot of men don’t hear the whole truth from their doctor – or maybe they do hear it, but then focus on statistics for younger men who have never had erectile dysfunction (ED) and think the results will be the same for everybody. They won’t.

If you are in your sixties or older, have already experienced ED, and maybe you also have some other health issues, like diabetes or heart disease, then most likely you will have some ED after surgery. It happens after radiation, as well; the onset is more gradual, but the basic problem is the same – damage to the nerves and blood supply that control erection (see below).

“Erections are going to be altered from what you had before surgery,” says Bivalacqua. “Unfortunately, many doctors never provide this information; in fact, some men believe that if their erections before surgery are not as rigid as they would like, that a radical prostatectomy may actually improve them. This is definitely not the case. You may go on the Internet and find some doctor who says that 98 percent of his patients are continent and have excellent erections after surgery – but nowhere does that doctor tell you that he or she is just reporting on his youngest and best post-op cases, not on every single patient. I can’t tell you how many men come to see me and expect the same results. When they’re older and already have some trouble with ED, that’s just not going to happen.”

Bivalacqua cites a recent study in the Journal of the American Medical Association led by Harvard urologist Martin Sanda, M.D., based on data from 1,027 men with clinical stage T1 and T2 prostate cancer who had either radical prostatectomy or external-beam radiation therapy. “For a 50-year-old man with good sexual function before surgery, the probability of having good sexual function 24 months after surgery ranged from 21 to 70 percent, depending on their pre-surgery PSA and whether the nerve bundles (see below) were spared.” And for a man of any age with good sexual function before external-beam radiation therapy, “the probability of having good sexual function 24 months later ranged from 53 to 92 percent, depending on their PSA level and whether they received a short course of hormones along with their radiation therapy.”

Hold that thought.  We need to take a very brief detour and have a mini-crash course in prostate anatomy. On either side of the prostate – think of Mickey Mouse’s ears, except extremely tiny and hard to see – are two bundles of nerves.   They are called neurovascular bundles (that just means there are a bunch of nerves and blood vessels all clustered together). These nerve bundles were discovered by Pat Walsh, who invented the “nerve-sparing” radical prostatectomy.

Although these nerves are not in the penis itself, they are responsible for erection. They’re like junction boxes that control the wiring in a different room. Inside the penis are blood vessels; they’re like the plumbing. Basically, the erection happens when blood flows inside the penis – think of a water balloon filling up. If you have heart disease, and plaque in the arteries that can hamper blood flow, the penis (which depends on blood flow for erection) can be affected, too. This has nothing to do with the prostate, or prostate cancer, or surgery or radiation. This is just a problem you may already have.

In a nerve-sparing radical prostatectomy, if cancer is well confined within the prostate, your surgeon may be able to save one or both of those nerve bundles. You can have an erection with just one bundle. If you have both bundles removed, because your cancer is too close to that edge of the prostate, you can still have a sex life; you just will need some help with erections, and there are several options.

But first, back to your own situation: “If you have strong erections already and the nerves that control erections are spared during surgery, your chances of achieving a full recovery are excellent,” says Bivalacqua. But if, before prostate cancer treatment, you already had some mild ED, “this means that even if the nerves are spared, you will need some medication to help with erections after surgery.”

By medications, he means pills like Viagra, Cialis, Stendra, or Levitra.

Before we get into the specifics of sexual function after prostate cancer treatment, here’s one more very brief detour:

What kind of cancer do you have? If your doctor says you are a candidate for active surveillance, and you don’t have a family history of cancer and you are not of African descent, you may want to consider it, because it won’t affect your sex life or your urinary continence. However, it is not fun to get repeat biopsies, and if you are the kind of man who will constantly worry about having cancer – even if it seems unlikely to progress – this may not be for you.

If you are likely to choose surgery after a few years of active surveillance because you don’t want to live with the cancer and you want peace of mind, then please understand that your chances of recovery of potency are better sooner rather than later. Younger men who are potent before surgery do better, for the reasons discussed above.

Next, and this is huge: If you have cancer that is likely to progress beyond the prostate, you should get treatment now. Active surveillance is for a highly selected group of men with cancer that’s considered “safe.” It is completely different from not having surgery because you don’t want to have ED and hoping the cancer won’t spread. That’s actually more like denial than a good treatment strategy, and here’s why:

If you wait to have treatment, you might have more trouble than if you get treatment now. Not just because you’re more likely to recover your potency if you’re younger, but because if you don’t get treated for prostate cancer when you need it, and if that cancer progresses, you will lose much more than the ability to have an erection. If you have advanced cancer, the mainstay of treatment for metastatic disease is hormonal therapy, the shutdown of testosterone. One of the most difficult side effects of hormonal therapy is that it causes loss of sexual desire. (Note: Testosterone comes back if you stop taking the hormonal therapy, so a short course of hormonal therapy with radiation is different from taking it for the rest of your life.)

Help for ED after Prostate Surgery: The Basics

What’s the secret to having a good sex life after prostate cancer? It’s very simple, says Bivalacqua: “You use prescription erection pills. If they don’t work, you move to injectable medications. If they don’t work, you get a penile prosthesis. Also, having a loving and understanding partner always helps.” There’s also the vacuum erection device (VED).   It is not a first-line treatment for ED because there’s a high drop-out rate, Bivalacqua says. However, the VED can play a very important role in another aspect of surgical recovery: penile rehabilitation (see below).

First, the pills: “When one of my patients leaves the hospital after a radical prostatectomy, he takes home a prescription for Viagra,” says Bivalacqua. Does he take it every day, like a vitamin? No. Although some doctors prescribe the pills this way, it’s not what physicians call an “evidence-based” practice; that is, the medical literature doesn’t back it up conclusively.   Instead, Bivalacqua tells his patients to take it as needed. “It is very difficult for me to tell a man that he should spend $600 a month to take a daily erection drug, because the evidence of a quicker return of erections is just not there.” However, he adds, “taking a pill daily may provide a benefit, and a lot of prostate cancer patients want to take a proactive approach. If that’s the case, then I encourage them to go ahead.”   Pat Walsh gives his patients samples of different types of ED medications, because each one works a little differently, so his patients can find the one that’s best for them.

Don’t just take a pill once and give up if it doesn’t work.

Taking an ED pill can boost confidence as well as help with erections, but even so, the first try might be frustrating. “I tell men that it often takes three or four attempts with Viagra to have a true response that will allow penetrative sex.” This doesn’t usually occur within the first couple of months after surgery. “Usually men see the most meaningful recovery around 9 to 12 months after surgery,” Bivalacqua notes. Just to recap here: Don’t be discouraged if the first time after surgery is not that great. And don’t give up.

Hear these words: “The penis works. The blood supply to the penis is still good.” So basically, it’s like a car that is having trouble starting. What you may need is a jump-start to get it going. That doesn’t mean you will always need this. Your body is going to continue to recover. It just means that at least right now, you might need a little help.

Now, here’s a question Bivalacqua asks all of his patients a couple months after surgery, when they are healing and are no longer having any problems with urinary leakage. (Note: not every man has urine leakage after surgery, but some men do and it is usually temporary.) “How important is it to you to have penetrative sex?” If that is very important to the man and his partner, “then I ask how often he has tried Viagra over the last four weeks.” If the man has tried it multiple times with no success, “I recommend that he start injection therapy immediately.” Remember, the penis works. “By injecting a medication that will increase the blood flow to that area, the man has a very good chance to restore erections and get that important part of his and his partner’s life back.”

Injection therapy? You mean, sticking a needle in the penis? Well, yes. But it’s a tiny needle, and your doctor won’t just hand it to you and say, “Good luck, buddy.” You will be taught how to use it. “Injection therapy allows a man to have sexual intercourse again,” says Bivalacqua. Very important: “We know that the more blood flow there is throughout the penis following a nerve-sparing radical prostatectomy, either with a pill like Viagra or with an injection of a pharmacological agent, the better the chances of regaining erections.”

Bivalacqua explains: “If you don’t have enough blood flow within the penis after surgery, it becomes ischemic; it does not get the nutrients it needs to stay healthy.”

Let’s take a moment to think about rehabilitation – say, after a bad injury. Maybe a man needs to learn to walk again, or use his hands, or how to talk again. If that guy just sits around and hopes it will happen and gets frustrated when it doesn’t, you may agree that he’s not taking the approach most likely to guarantee success. To put it bluntly, your penis needs rehab, too: “By increasing the flow of oxygenated blood to the penis, whether it is from a pill or an injection, we are able to preserve the erectile bodies (these are chambers where blood flows to provide a rigid erection), so they will respond once those nerves start to work again.”

How injection therapy works: As its name suggests, Tri-mix is actually three drugs (papaverine, phentolamine, and prostaglandin E-1). “The specific formulation of these drugs is based on the type of erection achieved with test dosages in the doctor’s office,” says Bivalacqua. “We teach the patient how to self-inject,” and understandably, this may take some getting used to. “The medication is shot into the base of the penis with a small hypodermic syringe,” and it works pretty quickly – within five to 20 minutes. What happens is that the Tri-mix causes the smooth muscle tissue in the penis to relax; it also dilates the main arteries and allows blood to fill the penis. “The erection can last between 30 and 90 minutes, and it becomes more rigid with sexual stimulation.” However, it may not always disappear right away after orgasm. (Note: After prostatectomy, there is no ejaculation, because the organs that contribute fluid for semen are gone.)

How well does it work? Pretty well; the success rate is between 70 and 80 percent.   However, the main cause of failure is poor blood flow to the penis, Bivalacqua says. “Sometimes, although the shot produces an initial erection, it doesn’t last because the veins in the penis are damaged,” because of heart disease, diabetes, or other health problems, in addition to the surgery.

Each shot costs about $7, and even though it works, about half of men abandon it within a year. Bivalacqua speculates that one reason is that these men didn’t get good or detailed enough instruction for them to feel confident injecting themselves. Also, it may take two or three visits for an experienced urologist to determine the optimum combination and dosage of the medication.

The Vacuum Erection Device (VED) and penis-stretching: One fact about the penis: It needs activity. The nerves in those neurovascular bundles are also responsible for nighttime erections (in your sleep), and those “are responsible for penile health and strength.” Think of tiny push-ups happening in your sleep. After surgery – temporarily if one or both nerve bundles (the nerves to the penis) are spared – these erections don’t happen. If these bundles are damaged or removed during surgery, scar tissue can develop. When any part of the body is injured, a scar forms. This is because as it heals, tissue gets fibrosis (it hardens; this is the more rigid tissue that makes up a scar). There is extra collagen in there, and this contracts over time. This contraction can shrink the penis by as much as half an inch. Now, before you say, “That’s it! I’d rather have the cancer!” or make any hasty decisions, please read this next sentence: “The good news is that there is a way to prevent the loss of length in the penis: using a vacuum erection device,” Bivalacqua says.

Please note this important point: We’re focusing on stretching, not shrinking.

Briefly, the VED is what you might suspect; an actual vacuum. The device costs between $200 and $500, and is available from the pharmacy with a prescription. You place a clear plastic cylinder over the penis, and use either a manual or electrical pump to create negative air pressure (a vacuum). It takes about two minutes to achieve an erection; then you slip a flexible tension ring from the bottom of the cylinder around the base of the penis. This keeps the blood from flowing back out. “No matter what is specifically causing the erection, the vacuum causes the vessels in the penis to fill with blood, just as they would during a normal erection.” There’s a downside, though: “The big complaint of all men using the VED is that the penis becomes cold and semi-rigid, and this makes intercourse difficult.”

Granted, it may not be the best way for you to have sex. However, you may want to think of it more in the category of an exercise bike: It can help you get back in shape. A recent study from the Cleveland Clinic evaluated the early use of a VED after radical prostatectomy. There were 109 men in the study. “One group of 74 men used the VED at least twice a week, starting one month after surgery, for a total of nine months,” says Bivalacqua. “The second group of 35 men did not receive any erection treatment.” The study’s investigators found that “only about 23 percent of men who used the VED properly complained of decreased length and girth of the penis, compared with 85 percent in the group who did not use it as directed, twice weekly. And 63 percent of the men in the control group – who didn’t use a VED at all – reported a decrease in the length and girth of the penis. To sum up: “What the VED does is stretch the penis. It is this stretching that will prevent the penis from contracting, or shrinking, after surgery.”

If You Still Need Help

MUSE: Meh. There is another type of therapy, called MUSE. Bivalacqua doesn’t recommend it, but your doctor might talk to you about it, so here’s what it is: MUSE stands for “Medicated Urethral System for Erections.” Basically, you take a small plastic plunger, and use it to press a tiny pellet (about the size of a grain of rice) into the tip of the penis. When it dissolves, it triggers an erection. It can also burn. “Many men complain of a burning pain in the penis after inserting the pellet,” says Bivalacqua.   Also, “the erection that you get is soft; it is not very rigid.” And, just as with the Tri-mix used in injection therapy , your urologist will need to determine the right dosage for you. “Some men may need double or triple the standard dose, but other men are so sensitive to the medication that they have actually fainted with the highest test dose.” Compared to an injection, “MUSE is nowhere near as effective.”

Penile Prosthesis

Instead, if pills or injections are not a good long-term solution, Bivalacqua recommends a penile prosthesis. “The device is just phenomenal,” he says. “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.”

It also looks 100 percent natural. It’s not some cyborg penis. For all practical purposes, it is your actual penis – just more reliable.

A penile prosthesis is an implant. It requires surgery to put it in. The procedure takes about an hour, and although it can be done on an outpatient basis, many urologists have their patients stay overnight.

How it works: Hydraulics. “The device is made up of two extremely compact, hollow cylinders,” explains Bivalacqua. These come in a variety of widths and lengths. “A small container that holds fluid is inserted in the lower part of the abdomen, and a pump is implanted in the scrotum. “ To get an erection, you squeeze the pump several times. This sends fluid from the reservoir to the inflatable cylinders, which then expand, making the penis get longer and wider – just as in a regular erection. Afterward, you squeeze a valve at the top of the pump, the fluid returns to the container in the abdomen, and the erection goes away. “The device is extremely durable and reliable,” says Bivalacqua.

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

 

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Surviving Cancer and Beyond

I had the privilege of meeting Paul Calobrisi through my work with the Prostate Cancer Foundation.   He is a prostate cancer survivor, and also a bladder cancer survivor. Basically, he is someone who has seen way, way too much cancer – in himself and in his family. He is also a remarkable person who has gotten through really awful things by being a smart partner in his own care. Somehow, he has managed to keep his sense of humor, too. Read more

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Policy Change on PSA Screening: A Step Back in the Right Direction

American men need a baseline PSA test and rectal exam to check for prostate cancer in their forties, and then they need follow-up screening at regular intervals – maybe every five years, if the PSA number is low and nothing feels abnormal in the exam, or maybe more often, depending on the number. Men who are at higher risk – men with a family history of prostate cancer and other forms of cancer, and African American men – need to start screening earlier, ideally at age 40.

Have you been screened yet? If not, why not? Read more

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Healthy and Over 75? Keep Getting Screened for Prostate Cancer

We are living longer, and 75 is not the ripe old age it used to be.  But it’s a cutoff age for PSA screening – and this is missing cancer in men who really need to be treated, say Brady investigators.  “There is increasing evidence that this age-based approach is significantly flawed,” says Johns Hopkins urologist Patrick C. Walsh, M.D.  Walsh and I have written several books on prostate cancer, and this new information is being added to the upcoming 4th edition of our book, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, which we’re writing now.

 doctor medicineWalsh is the senior author of a recent Johns Hopkins study that looked at high-risk prostate cancer in older men.  The study’s interdisciplinary group of investigators also includes first authors Jeffrey Tosoian and  Ridwan Alam, and Carol Gergis; Amol Narang, Noura Radwan, Scott Robertson, Todd McNutt, Ashley Ross, Danny Song, Theodore Deweese, and Phuoc Tran.   

The U.S. Preventive Services Task Force recommends against screening for men over 75.  “There’s no question that there has been overtreatment of prostate cancer,” says urologist Tosoian. “However, that is getting better; more men are taking part in active surveillance programs, and we are much better at interpreting PSA and other biomarkers to rule out aggressive disease.”

But PSA can’t be interpreted if a man doesn’t get his PSA tested.  Population studies have shown that “men diagnosed at 75 years or older account for 48 percent of metastatic cancers and 53 percent of prostate cancer deaths, despite representing only 26 percent of the overall population,” says Tran, clinical director of Radiation Oncology and Molecular Radiation Sciences at Hopkins.  

Why are older men more likely to die from prostate cancer?  To find out, the team studied 274 men over age 75 who underwent radiation therapy for prostate cancer. “We found that men who underwent PSA testing were significantly less likely to be diagnosed with high-risk prostate cancer, and that men with either no PSA testing or incomplete testing (either a change in PSA was not followed up, or a biopsy was not performed when it was indicated); had more than a three-fold higher risk of having high-risk disease at diagnosis, when adjusted for other clinical risk factors,” says Tran.

Although this was a small study and more research is needed, Walsh says, “we believe that PSA screening should be considered in very healthy older men.”

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

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Prostate Cancer and Your Genes

If your mom had breast cancer, that could raise your risk for prostate cancer.  If you have aggressive prostate cancer, your daughter might be at higher risk for ovarian or breast cancer.  Some “bad apple” genes run in families; doctors know what they are, and there’s a blood test to look for them.

For the last two decades or so, doctors and scientists have talked a lot about genes and genetic testing, and about gene-fixing medicines that can stop cancer in its tracks. Until recently, with a few exceptions, that’s mostly what it has been: talk, and frankly, a fair amount of hype.

That’s changing.  I recently interviewed Jonathan Simons, M.D., medical oncologist and molecular biologist, and also President and CEO of the Prostate Cancer Foundation, which has funded some of the most exciting research in this area.   “Everybody talks about genes,” he says.  “But what really matters is, how does it help you?  How can it help your children and grandchildren?” 

medical laboratoryA new blood test called the Cascade Genetic Test looks for mutations in several known “bad apple” genes.  These are genes that are supposed to repair DNA damage. When they malfunction, it is easier for cancer to develop. 

What does this mean to you?  Well, say you’re a man with a rising PSA, and a biopsy shows just a small amount of low-grade cancer.  Your doctor might want to wait and do another biopsy in six months to a year, and you might decide to get yet another biopsy a few months after that.  But what if you could add a very important piece of extra knowledge to the puzzle?  What if you could find out whether you have one of these bad genes?  That might lead you to seek treatment right away, before the cancer has a chance to get established outside the prostate. 

Another thing: “If a man tests positive for one of these genes, his sisters, brothers, and children will need genetic testing, as well, because of the high probability that their cancer risk has been significantly elevated,” says Simons.  “Men on active surveillance should have these genes tested.”

Very important: Testing positive is not a cause for alarm, or for making panicky, hasty decisions.  “Genes don’t have to be your destiny,” notes Simons. 

In other words, if you have one or more of these genetic mutations, cancer is not a done deal.  But it’s on the table.

A man diagnosed with prostate cancer who has one of these mutated genes needs to take that cancer diagnosis very seriously, even if it seems to be low-level, “safe” prostate cancer. 

It turns out that more than half of American men are carrying a gene that they inherited from either their mother or their father that increases their chances of getting prostate cancer.  “We now know that prostate cancer is perhaps the most heritable of all the major cancers,” says Simons.  Again, having one of these bad genes doesn’t mean that cancer is inevitable – which also means that having a healthy diet and lifestyle may help prevent cancer from ever getting started – but it can make it easier for cancer to spread and become difficult to treat.

“The genes tell their story,” says Simons.  The good news is that, for the first time, a test can provide the Cliff’s Notes preview of what that story might be.   For more on this test, keep reading.

Bad “Spell-checker” Genes

mindless wanderingAn important study, led by Fred Hutchinson Cancer Research Center medical oncologist Peter Nelson, M.D., funded in part by the Prostate Cancer Foundation, and published in the New England Journal of Medicine, is changing how we think about prostate cancer. What Nelson has found can be summed up like this: 

Prostate cancer is a lot more of an inherited disease than anybody thought;

There are 16 bad genes that we now know to look for; and

If you have a mutation in one of these genes, your sons and daughters, and their children need to know about it, because they are more likely to develop cancer, too.

Every gene has a job.  Some of them act like brakes that control cell growth; some do just the opposite, and instead of curbing growth, they step on the accelerator and speed it up in a bad way.  Some genes are tiny Xerox machines, making genetic copies.  And some genes are little quality control specialists; they’re the spell checkers. 

The genetic mutations we are born with are called germline mutations.  Those are different from the kind of incremental gene mutations that develop over time – through exposure to carcinogens in cigarettes, for example, or eating a bad diet, or drinking too much alcohol.   

Nelson’s study looked at these inherited mutations in 20 spell-checker, or “DNA-repair,” genes, in 692 men with metastatic prostate cancer at institutions in the U.S. and United Kingdom.  They found mutations in 16 of them, including some unexpected ones, like BRCA1 and BRCA2. 

“Now wait,” you may be thinking, “aren’t they the breast cancer genes?”  Yes, and for years, these genes were not significantly linked to prostate cancer.  Now we know that the very same mutation that can cause breast and ovarian cancer in women can cause lethal prostate cancer in men. 

Other bad DNA-repair genes include one that sounds like it should be at a bank, called ATM; and one that sounds like a roadie making sure the microphones work at a concert, called CHEK2; there’s RAD51D; and one that sounds friendly but isn’t at all, called PALB2, which is strongly involved in pancreatic and breast cancer.

These gene mutations are rare in the general population, but startlingly common in men with metastatic prostate cancer:  Because of this work, Nelson and colleagues estimate that one in nine – 12 percent – of men with metastatic cancer have them, even if they have no family history of prostate, breast, or ovarian cancer. 

And this last part is actually hopeful because it means that cancer is not inevitable if you carry one of these mutations.  It may well be that if you live your life doing some things that we know help prevent or delay prostate cancer – not eating a lot of red meat and dairy products, eating foods like broccoli and tomatoes, not smoking, not drinking an excessive amount of alcohol, and not being overweight, which adds stress to your cells and makes them less resistant to cancer – that you will never develop prostate cancer.  And if you start getting screened for prostate cancer at age 40, and if you are then screened every year to look for changes in your PSA and other markers, that if you do develop cancer, it will be caught early and you will be cured.

headacheSo don’t despair.  But if you have metastatic prostate cancer, Nelson recommends that you get genetic testing, because your kids and grandkids need to know if one of these bad genes runs in the family – so they can be considered high-risk for certain types of cancer, screened vigilantly, treated aggressively if cancer is found, and most important of all, live to a ripe old age and not die of cancer.

Other hopeful news:  There are entirely new kinds of cancer-fighting drugs that target specific genes.  One class of drugs is known as PARP inhibitors, and the standout in this class is Olaparib, which is being used to treat women with BRCA mutations in ovarian cancer.  It has now been approved as a treatment for advanced prostate cancer in some men. 

What should you do?  If you have high-risk or metastatic prostate cancer, or if you have a strong family history of prostate or other cancers, ask your doctor about this test. It costs $250 at Color Genomics.

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

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Active Surveillance for Prostate Cancer: Questions to Ask

christopher_barbieri“There’s no one way to select candidates for active surveillance,” says urologist and molecular biologist Chris Barbieri, M.D., Ph.D., of Weill Cornell Medical College/New York Presbyterian Hospital.  In addition to doing molecular research on prostate cancer, he treats men with all kinds of prostate cancer and works with several hundred patients currently on active surveillance.

Some hospitals have very specific criteria.  For example, at Johns Hopkins, men selected for the active surveillance program are considered “very low-risk.”  These men have Gleason score 6 cancer in no more than two biopsy cores; in each of these cores, cancer is present in half or less; their PSA density (PSA divided by prostate volume; this can be helpful if a man has benign prostate enlargement, or BPH, which is a separate prostate problem and is not cancer) is 0.15 or less; and they have no cancer that can be felt on a rectal exam.  Other men in the Hopkins program have “low-risk” cancer: no cancer that can be felt on a rectal exam, a PSA below 10, and Gleason 6 cancer on their biopsy.  All men are monitored faithfully, with regular follow-up visits and yearly biopsies, although recent studies suggest that some men can still be safely monitored with a longer interval between biopsies.

Other hospitals take it more on a case-by-case basis.  The truth, says Barbieri, is that “nobody knows the perfect way to do this.  There are many hospitals where physicians are taking very reasonable approaches,” even if they differ on the exact specifics.  “The principle is that it’s for men with a low volume of disease, and a low grade of cancer.”  However, he adds, the National Comprehensive Cancer Network’s newest guidelines, unanimously developed by a panel of the country’s top urologists and scientists, has stated that selected patients with Gleason 3 plus 4 disease can also be considered for active surveillance.  “Age comes into play,” he says, as does the man’s general health.

medical labHow often should men on active surveillance get repeat biopsies?  “There’s no formal consensus,” says Barbieri.  “Quite frankly, we as a field are still trying to figure out how to do this perfectly, what’s working best and what’s not working.”  Although some men on active surveillance decide to have the cancer treated just because they’re anxious about it, “I think that’s improving, as we get the message out that some prostate cancers clearly are never going to threaten a man’s health during his natural lifetime.  The diagnosis itself becomes a little less threatening.”  There has been a major shift in attitude, he adds.  “More men are open to active surveillance, and are comfortable with the idea of watching the cancer instead of treating it right away.”

If there is going to be a “grade reclassification” – if a repeat biopsy finds a greater volume or a higher grade of cancer – it usually happens within the first two years.  “For most active surveillance protocols, the definition for when a cancer has progressed is based on a change in the grade,” says Barbieri.  “So if you had a Gleason 3 plus 3 cancer, and we find a higher grade of cancer with another biopsy, you are considered to have progressed on active surveillance, and most experts would suggest treatment.” 

Thus, a change in the grade of cancer can be a game-changer (meaning you go from being on active surveillance to needing treatment).  So is a change in the volume of disease.  “If a man has two cores of his initial biopsy positive for cancer, and the next time, 6 or 8 cores are positive, that’s a lot more cancer there,” and this likely needs to be treated.

What about the risks from having a lot of repeat biopsies?   “The major risk is the risk of infection,” Barbieri explains.  “The current data suggest the risk is between 2 and 5 percent per biopsy.  If you roll the dice enough times, you’re more likely to get an infection.”  The risk can be minimized in several ways, including prescribing different antibiotics after each biopsy (to help avoid resistance to the drugs), and doing a rectal culture to determine the presence of certain bacteria, and selecting antibiotics based on that.  Other risks, besides infection, include having trouble urinating after a biopsy and – this is a very small risk – the risk of excessive bleeding that requires a transfusion. 

doctor medicineWhat questions should you ask your urologist about active surveillance?

Here are a few that Barbieri suggests:

Does my cancer need to be treated now?

Given my age and general health, is this a good treatment for me?  If you are a young man, perhaps in your early fifties, you may decide to get your cancer treated, so you don’t have to think about it anymore, Barbieri says. 

Should I get a second opinion on my biopsy? Most likely yes, says Barbieri.  “In my experience, it is very rarely a bad idea to get a second opinion.”

You may also be wondering:  When can I safely stop active surveillance?  The answer there is, “We don’t know yet when it’s safe to stop active surveillance.”

What about red flags from the doctor’s perspective?  Even if a man seems to have low-grade, low-risk, low-volume cancer, are there reasons why active surveillance is not for him?  “I don’t think I would deny any man the opportunity to be on active surveillance if he understands the risks.” says Barbieri.

However:  If you are a man of African descent, you are at a higher risk to have prostate cancer, a higher risk to have more aggressive prostate cancer, and at a higher risk to die of prostate cancer if you do have it.  Even if it seems to be the “good” kind. You can still be on active surveillance, but careful urologists such as Barbieri will keep an especially close eye on you.  “I’m more likely to order additional tests for African American men,” including an MRI and genetic tests.  “Most small or even medium-sized cancers really can’t be seen on transrectal ultrasound.  MRI can show this.  It can give you a lot of information about the location of a possible tumor, and whether the tumor is higher-grade.”  However, MRI is more expensive; it also can generate false positives and lead to additional biopsies.

Another red flag for Barbieri is the man’s family history.   “If somebody looks like he should be fine on active surveillance and has a bunch of prostate cancer in his family, that’s reasonable as long as you’re keeping a close eye on him.”  However, he is concerned “if a man’s family members died of prostate cancer, especially at a fairly young age.  I always ask that question: what happened with the prostate cancer?  If your dad had it and died at age 60, that’s a different situation than, say, your dad got it at age 78 and got hit by a bus at age 97.”  When the family history has men dying of prostate cancer, this suggests that a different kind of cancer – the opposite of indolent; in fact, aggressive enough to kill – may be a possibility. 

And the presence of Gleason 4 disease makes Barbieri wary.  “Gleason 4 plus 3 disease and above, or any young man with any Gleason pattern 4.”  The presence of Gleason 4, especially in a younger man, suggests that the cancer may be more aggressive than it seems and that it probably needs treatment.

Finally, what about red flags from the patient’s perspective?  What should a doctor not be doing?  Beware of over-frequent biopsies, says Barbieri.  “If a doctor is doing biopsies more often than in the range of consensus, after a first confirmatory biopsy to know there wasn’t high-grade cancer missed – doing it more than yearly is hard to justify.”  Also, beware of a doctor who orders lots of tests and can’t really give you a good explanation for why you need them.  For example, “frequent transrectal ultrasound on active surveillance doesn’t really help” do anything except pad the doctor’s bottom line, rather than serve the patient’s best interests. 

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

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Active Surveillance for Prostate Cancer

What You Need to Know

Is active surveillance right for you?  The answer to this question varies, depending on a bunch of factors: your particular form of prostate cancer, your age, and general health, and also on the criteria used to select men for active surveillance programs from hospital to hospital; some are stricter than others.

Men who are eligible for active surveillance have cancer that shows all signs of being the “good” kind:  slow-growing, low-volume (meaning, there’s not very much of it in all the tissue samples from your prostate biopsy), not aggressive. 

men thinkingCan men live with slow-growing, low-volume prostate cancer?  Absolutely.  The proof of this is found every day, in many thousands of autopsies done around the world, of men in their eighties and older who died of something else – a heart attack, for instance.  Then, in the autopsy, the pathologist looks at the man’s prostate and sees cancer in there.   This cancer is what doctors call “indolent.”  It’s low-risk.  Slow-growing, low-volume. It sits there.  It doesn’t cause any harm, and clearly never needed to be treated, because the guy never knew he had it and died of something else.  When urologist Christopher Barbieri, M.D., Ph.D., on the faculty at Weill Cornell Medicine at New York Presbyterian, talks to his patients who are candidates for active surveillance, he tells them, “You’re more likely to get hit by a bus when you’re 100 years old than for this cancer to kill you.”

Let us digress for a moment and think of prostate cancer in the form of an animal.  The most aggressive cancer is like a bird; it grows quickly and is very likely to fly away from the prostate to other places in the body, making it more difficult to kill.  The least aggressive cancer moves like – well, something slow, a turtle, or a sloth.  And then there are men with the cancers in between – let’s think of them as rabbits — cancers that do need to be treated with surgery or radiation.

Indolent prostate cancer is the pet rock of cancers; it doesn’t do much, but the upside of that is that it doesn’t need to be treated, either. 

Important point:  Cancer may not stay indolent.  Or, from the initial biopsy and test results it might appear to be low-risk and or low-volume, but actually more cancer is there and the biopsy needle just missed it.   So, men who choose active surveillance may not stay on it forever if their cancer undergoes “grade reclassification” – if that is, you have another biopsy and it suggests that more cancer is present, or that it may not be so slothlike in personality.  So if you choose active surveillance, know that at some point, you may need to have surgery or radiation.   If you are an African American man, talk to your doctor about getting an MRI to make sure that you don’t have cancer that was missed on the biopsy.

Choosing active surveillance – remember the keyword is “active” – means that you will need to keep getting your cancer checked out.  You will need to get follow-up PSA tests, exams, and biopsies, maybe once a year, for many years.  If you are a young man, say age 50, and you could reasonably expect to live another 40 years, this could mean that you get your prostate stuck with needles many, many more times in your life.  (Not until you’re 90, but at least another 15 years or so.)  Biopsies have their own risks, which I’ve written about here.  You may not want to subject yourself to this.

restaurant manYou will also have to live your life knowing you have cancer.  Can you handle this?  Some men can’t.  Thinking about the cancer in there makes them anxious.  To them, it’s like a time bomb – when actually, it may not be a time bomb at all, but more of a clock just happily ticking away, not causing harm – and they end up having surgery or radiation just for the peace of mind.

On the other hand, if you can live with it — trusting that the follow-up monitoring will detect any change if it happens and that if you need to get treatment, you won’t miss that window of treatment when the cancer is still confined to the prostate, and you will have plenty of time to make that decision — then active surveillance may be a good option for you. 

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

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