Just hear me out here.   Look:  I get it.  I come from a high-risk prostate cancer family, with five beloved men, including my husband, my dad, his dad, his grandfather, and my grandfather affected so far.  So you know I am not ever going to downplay the risk.  But enough!  Let’s stop being afraid of prostate cancer, or feeling that it’s just inevitable, or that there’s nothing you can do, or worse, pretending like the risk isn’t there.  Dismay doesn’t help; action does!

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Why do I worry so much about black men and prostate cancer?  Well, I’ve met a lot of men with prostate cancer over the years, and two who hold permanent places in my heart are both black, both U.S. Veterans, the toughest guys you could ever meet (one, Les, was a USMC drill sergeant!), both devout in their faith, both devoted family men, both not screened for prostate cancer when they needed to be, starting at age 40.  Both were diagnosed with metastatic prostate cancer, and for both, cancer proved an enemy they couldn’t beat.  Their deaths devastated me.  Which is why you may think I’m crazy when I say this now:  Enough with the Dismay!  

Just hear me out.  Look:  I get it.  I come from a high-risk prostate cancer family, with five beloved men, including my husband, my dad, his dad, his grandfather, and my grandfather affected so far.  Two of them, my husband and my dad, got screened, were diagnosed early, and their cancer was cured.  I worry about our two sons, and you can believe I will be on them like the proverbial duck on a June bug to make sure they get screened!  So you know I am not ever going to downplay the risk.  But enough!  Let’s stop being afraid of prostate cancer, or feeling that it’s just inevitable, or that there’s nothing you can do, or worse, pretending like the risk isn’t there.  

Dismay doesn’t help; action does!  Yes, if you are of African descent, you are at higher risk of getting prostate cancer.  However, says physician-scientist Kosj Yamoah, M.D., Ph.D., radiation oncologist and cancer epidemiologist at Moffitt Cancer Center in Tampa, Florida, who is also black, this news should not make you feel defeated. Instead, use this knowledge as advance warning!  Here, then, are some facts and encouraging advice about how you can take action:

Fact: If you’re a black man, you are more likely to get prostate cancer.  Your odds are one out of six, as opposed to one out of eight for men of other races. “In other words,” says Yamoah, “you are 74 percent more likely to get the disease than non-black men.”

How can you act on this?  “Get your first PSA by age 40.”  Note: you might have to ask your doctor for this, because many doctors don’t start prostate cancer screening until patients are in their mid-forties or even early fifties.  But research currently under way at Moffitt and elsewhere  suggests that for some black men, the early fifties may be too late to catch cancer while it is still confined to the prostateFor whatever reasons – genetic, environmental, or both – in black men, cancer can take less time to develop, and to spread outside the prostate.  So, if you are in your forties and have not been screened, Yamoah advises, ask your doctor for a PSA test and physical exam to check for prostate cancer.  “This is something you can do.  Make it happen.” 

Fact:  Treatments for localized prostate cancer work equally well in men of all races.  But that’s a limited-time offer; it only holds true if cancer is caught and treated early.  “If you or a loved one are African American and have prostate cancer, get treatment in a timely manner!” says Yamoah.  “Particularly for localized prostate cancer, whether you get surgery or radiation, if you are diagnosed and are treated adequately, know that African American men survive the disease exactly the same as non-black men – as long as these two caveats are met.  In equal-access environments, there is no difference in survival.”  However – perhaps because they may be younger, and otherwise may be feeling strong and healthy – if men delay treatment, because “I feel fine,” their cancer may become much more difficult to cure.  Ladies, if you are reading these words, know that you may have to do what my mom and I did with my dad, and what I did with my husband:  make him get regular screening.

Fact:  Unfortunately, treatment is variable.  Success of prostate cancer treatment is operator-dependent; so is quality of life. 

What does this mean for you?  “Seek the best care; don’t settle for less,” says Yamoah.  “It may require a bit of researching, but it makes a difference.”  Making the effort now to do your due diligence and find the best surgeon or radiation oncologist will pay off for years to come.  “In many states across the U.S., we have the best of the best in cancer care, but sometimes patients don’t seek the best care from centers with the appropriate expertise.”  Important note:  “It is also okay to get a second opinion if you are unsure about your treatment plan.”  Unfortunately, patient support groups and online chat rooms abound in stories of regret, anger, or sadness from patients who did not receive excellent care.  Yamoah tells his patients: “Look at it this way.  You would not want to take your car to a bad mechanic; you want to take your car to the best shop.  Why not your body?  It should be no different for health care.  We should be looking for the best.  Being your own advocate for getting the best care could change your life.”

That said, “Don’t fear treatment.”  For every possible side effect you might have, there are effective treatments.  You can get your life back.  The main thing is to be cancer-free.  Also, there are exciting new treatments being investigated now that don’t involve removing or treating the whole prostate; because of advances in imaging (MRI and PSMA-PET), it is now possible to get a pretty accurate idea of the extent of cancer.  On the horizon are treatments that may be able to cure prostate cancer when it is caught very early that have few to no side effects!  

You Need Personalized Care!

      Not only does prostate cancer tend to start at a younger age, and to be more aggressive, in some black men: it also tends to start in a different part of the prostate!  And not only is it often in a different part (the anterior region of the prostate, behind the urethra): it’s a part that’s more difficult to reach, and easier to miss, with a tiny biopsy needle.

What can you do about this?  Yamoah offers this advice: “An MRI and perhaps an additional blood or urine test, to discover or rule out aggressive cancer, will help even the playing field for black men – even for black men who are thought to have lower-risk disease, who may want to be on active surveillance.”  Is it truly safe to be on active surveillance?  Do you truly have low-risk disease – or was there more intermediate- or even high-risk disease hidden in the prostate that was not captured by the biopsy needle?  “Active surveillance works well – as long as patients are staged correctly.”

Here’s another difference:  Black men seem to respond better to some treatments than other men!  Research by Yamoah and colleagues has shown that Provenge (Sipuleucel-T), an immunotherapy drug currently approved for men with metastatic prostate cancer, is more effective in African American men than in other men.  Many black men “seem to have an immune microenvironment enriched for immunosuppressive biomarkers,” says Yamoah.  “Also, in these men, prostate cancer tumors may be a bit more sensitive to radiation.   We are seeing something in clinical trials: that medications like Provenge, and in some instances radiation and ADT, seem to benefit black men more than white men, as measured by longer disease-free intervals and longer survival.”  This suggests, he adds, that “maybe there is some component of a distinct biological subtype that favors certain treatments in black men; it’s a paradigm shift!”

Encouraging results from several studies now under way will help oncologists “tailor treatments appropriately with personalized medicine, based on individual patients’ biology.  This may be leading to a change in the way we see metastatic disease, that will convert it into a chronic disease.  This is all emerging; it’s all new stuff.”

What You Can Learn from Eastern European Jewish Women

“It might seem racist to say that cancer is different in black men than it is in other men,” says Yamoah.  “But that couldn’t be further from the truth: it’s not about race.  It’s about subtypes of cancer.  It is incorrect to say that you have a different type of cancer because of your skin color; the message is that, in order to treat all men equitably, we have to study all populations.”

What are subtypes?  They are specific varieties of a disease – based on differences in mutated genes, or differences in the immune system, or maybe even differences in the microbiome.  Each subtype may respond slightly differently to treatments and also to biomarker tests.  “We know that the cookie-cutter approach, treating all patients the same, does not work with prostate cancer,” says Yamoah.  “So, we need to fine-tune our diagnosis and treatment.”  Unfortunately, much of what scientists have learned about prostate cancer has come from studying predominantly white patient populations.  “We have not had enough African American participation in studies and in scientific exploration.”

How can you help change this?  “Get involved in research.  Become active participants in discoveries for treating prostate cancer.”  Particularly, different biomarkers may work better in black men.  “Whether it’s helping to determine the polygenic risk score – are you at risk, or do you have a family member at risk – or whether it’s helping to find out through biomarker discovery what subtype of prostate cancer you have, and how best to treat that, we could really use your help.”  Many academic medical centers have “biobanks,” collections of patients’ blood, biopsy and tissue samples that can be used for research.  If your doctor asks you to participate, consider saying yes.

Consider the case of Ashkenazi Jewish women – descendants of a very small group of about 350 people who lived in Eastern Europe about 700 years ago.  Around one in 40 people with Ashkenazi Jewish ancestry has a mutation in the BRCA gene, which is linked to breast and ovarian cancer, and also other cancers, including prostate cancer.  “Through studying a sub-population, we discovered that gene,” says Yamoah.  But the implications of this gene are widespread:  “Recently, BRCA mutations have been linked to triple-negative breast cancer, which is more predominant among African women.  If we hadn’t studied it in the Ashkenazi population, we never would have identified it.  Now it has become a biomarker,” and scientists have identified a class of drugs – PARP inhibitors – that work well in cancers with this genetic mutation, including prostate cancer.  “It is no different from studying black men.  What we learn from identifying subtypes is going to benefit the globe.”  The message is “not treating you different; it’s treating you right.”

Each of us has a certain predisposition to disease, Yamoah adds.  “For example, some people smoke for 30 years and never get lung cancer.  Others smoke for 10 years and get it.  We all have a different threshold, based on our genetic predisposition.”  Prostate cancer develops because a gene is mutated.  “regardless of how it occurred,” whether through decades of eating a bad diet (environmental factors), or through inheriting a bad gene (direct genetic predisposition).

The idea of “one size fits all” medicine sounds nice and egalitarian, but in reality, one size does not fit all.  Take, for example, tattoos used in radiation oncology to help pinpoint the areas of treatment.  “We had some patients come through, and the technicians called me into the clinic and said, ‘We can’t find the spot; we can’t tell where the tattoo is.’  I said, ‘That’s because the ink in these localization tattoos was developed for the lighter skin and not for the darker skin!”  Yamoah found a company that has developed fluorescent tattoos (which show up on any skin color), to be available for his patients with dark skin.  “We have made a lot of our discoveries in prostate cancer only looking at one patient population,” but that is changing.  “We are now in an era of moving towards more personalized care, regardless of race.”

Another way you can help is to become an advocate.  “If you are a black man and you don’t have prostate cancer, you have a voice.  You have a sphere of influence; use your influence to encourage others to take heed,” to get tested starting at age 40, and to get prompt treatment from the best doctors you can find.  “If you’ve had prostate cancer and you’re a survivor, please be an advocate.  We need your voice.  Whether you have it or whether you don’t, please help change prostate cancer for this population!”

How Diet, Exercise, and Lifestyle Can Help Lower Your Risk of Fatal Prostate Cancer

If you are overweight, if you smoke, are sedentary, or if you eat a high-fat, high-carb, low-vegetable diet, you are doing prostate cancer a favor:  you’re making sure it has a very hospitable environment.

“Cancer is also a chronic disease,” explains Yamoah.  “Men with prostate cancer who also have high blood pressure, hypertension, diabetes, and coronary disease – many American men of all races who are affected by one or more of these conditions – do worse with their prostate cancer.  If your body mass index (BMI) is high, if you have cardiovascular disease or diabetes, these are conditions that can be made worse by androgen deprivation therapy (ADT).  If we have a man who might benefit from ADT, but who has chronic conditions that are detrimental to his overall well-being, we may have to give suboptimal care to decrease the risk of severe side effects because of these co-morbid conditions.”

What can you do about it?  Exercise has so many beneficial effects on men with prostate cancer, that it might as well be considered a medicine.  “The most effective  avenue for combating the side effects of ADT is exercise,” says Yamoah.  Similarly, “if you are being treated for localized cancer, if you follow a few simple guidelines for wellness, you are going to do better, recover sooner, and have fewer side effects.”

Exercise doesn’t necessarily mean vigorous activity.  Just walking is a great start!  You don’t have to pump serious iron, either; even light weights can help strengthen your muscles and protect your bone density.

If you smoke, there’s never been a better time or reason to quit.  Men who quit smoking immediately begin to lower their risk of dying of prostate cancer.  For more, see this discussion.

Look for foods that fight inflammation and that help prevent insulin resistance – both of which can make cancer grow faster.  Caloric restriction – eating fewer calories a day – is also proving to help slow prostate cancer.

“We wish we had medicine to prescribe that had as many beneficial effects as exercise, weight loss, not smoking, and eating an anti-inflammatory diet,” says medical oncologist and molecular biologist Jonathan Simons, M.D., CEO of the Prostate Cancer Foundation.  “What’s good for the heart is good for fighting prostate cancer.  What’s good for the blood pressure is good for fighting prostate cancer.  It’s all connected.”

Finally, one easy-to-fix problem that is common in black men is not getting enough Vitamin D.  “Most black men are Vitamin D-deficient,” says Yamoah, “especially in the U.S.”  Just spending time outside in the sunshine may not be enough, he adds.  But good news:  an inexpensive, over-the-counter supplement can restore your body’s Vitamin D levels.  Note:  2000 IU is the recommended safe dose of Vitamin D.  It’s not a case of, “if some is good, mega doses are better,” because you can get too much.  Just stick with 2000 IU per day.  What does vitamin D do?  “It’s like flame retardant on cancer,” says Simons.  “It helps cool the inflammatory environment that cancer loves so well.”

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.

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

 

In Australia, and to a smaller but increasing extent in the U.S., urologists are moving away from the traditional transrectal (TR) biopsy.  A much lower risk of infection is a big reason why.  

Nobody wants a prostate biopsy, but we’re stuck with it.  Literally.  Multiple times.   And for the vast majority of men (more than 2 million in Europe and North America alone), those hollow, ultra-sharp biopsy needles go right through the rectum to reach the prostate.  Unfortunately, the rectum is just chock full of bacteria, and this, in turn, means a couple of things:  the risk of infection and sometimes sepsis, and the need for antibiotics, some of them quite powerful.

Because infection can be such a serious complication, urologists have gone to great lengths to try to minimize it – particularly for men with a chronic illness such as diabetes, men with prostatitis or a urinary tract infection, or men who use a urinary catheter.  These men at higher risk often need a longer course of antibiotics, or different antibiotics.  Some options to reduce the risk of infection are to use more than one antibiotic for extra coverage, or to try to tailor the antibiotic to the specific bacteria found in a man’s rectum.

Before a TR biopsy, “we routinely swab a man’s rectum to see what bacteria he has, and we give him antibiotics based on those bacteria,” says University of Pittsburgh-Western Maryland urologist Michael Gorin, M.D.  “But despite our best intentions, sometimes these antibiotics fail to prevent an infection. Additionally, antibiotics can cause complications on their own.”

If only there were alternative.  Wait!  There is!  It’s a different way to reach the prostate:  through the perineum, the area between the scrotum and rectum; this is called transperineal biopsy.  Now, don’t get too excited:  Neither kind of prostate biopsy is ever going to be fun.  However, the perineal approach has some important advantages.  One big one: zero risk of infection!  Zip.  Nada!  “With the transperineal approach,” says Gorin, we don’t have to give any antibiotics, because instead of passing through the rectum, the needles go through an area of skin, which can be thoroughly cleansed before the procedure.”  Gorin pioneered the transperineal approach at Johns Hopkins, and is second author of an article that is shaking up the world of prostate biopsy:  “TRexit 2020: why the time to abandon transrectal prostate biopsy starts now.”

The paper’s first author, and a leading proponent of the transperineal approach, is Australian urologist Jeremy Grummet, M.B.B.S., associate professor of Urology at Monash University in Melbourne.  Grummet made a formidable argument in favor of transperineal biopsy at the American Urological Association’s annual meeting in 2017, with a PowerPoint presentation that featured, memorably, a slide of an angry poop emoji with these talking points:  “TR biopsy is dirty,” and “We use antibiotics instead of basic hygiene.”

That image was followed by a picture of a headline from Bloomberg News, about fears of an “Antibiotic Apocalypse” being stoked by antibiotic-laden chickens.  What’s happening in big agriculture, Grummet says, “is a very close analogy to what we do in hospitals.  There’s an extraordinary lack of hygiene, replaced by the use of antibiotics.  It works in the short term, but it also produces an immense amount of antibiotic resistance.”  The antibiotics often used with TR biopsies are fluoroquinolones; however, “fluoroquinolone-resistant organisms, also known as ‘Superbugs,’ have been identified in 10 to 30 percent of patients undergoing rectal swab cultures before biopsies,” Grummet notes, “and the incidence of hospitalization due to severe infections after prostate biopsy is increasing.”  A 2015 study of 455 patients in a VA hospital in Boston found that 2.4 percent of the men developed sepsis after prostate biopsy, and 90 percent had fluoroquinolone-resistant bacteria.   In addition, side effects of fluoroquinolones can be serious or potentially disabling, including depression, disorientation and agitation, tendonitis and tendon rupture, pain in the muscles and extremities, and gait disturbances.

Lack of hygiene?  But… but… don’t men do an enema before biopsy?  That cleans it, right?  Sadly, not really.  An enema flushes out poop, but it does not eradicate rectal bacteria.  It can’t.  “You can imagine, sticking a needle into a rectum, which is purpose-built for feces, absolutely crawling with bacteria.  It’s a dirty procedure; you take a clean needle, and put it through a contaminated area: that’s what a TR does every time.  You’re playing roulette with your needles; you have no idea if you’re inoculating bacteria with rectal flora into the prostate.  We try to overcome that with antibiotics.”

Going through the rectum, Grummet continues, goes against the basic surgical principle of sterile technique.  “Why do we wear gloves, why do we wash our hands?  Yet we completely turn a blind eye to that whole principle when we do a transrectal biopsy.”

What if, he says, “we could eradicate prostate biopsy sepsis?  And what if we could do it without using big-gun antibiotics on a global scale?  We can and we have.”  In a multi-center study of transperineal biopsy in Australia, Grummet and colleagues showed that of 245 consecutive men who received transperineal biopsy, there were zero readmissions for infection.  “Our series has since grown to 1,194 consecutive cases at five centers across Melbourne, with no complications and zero hospital admissions for infection.”

The actual transperineal approach, itself, is not new, notes PCF-funded investigator Edward Schaeffer, M.D., Ph.D., Chair of Urology at Northwestern University’s Feinberg School of Medicine.  “Transperineal biopsies have been around for several decades, and offer an opportunity to sample all regions of the prostate very efficiently” (more on this below).  However, there was a good reason why they weren’t popular: “The limitations of transperineal biopsies in the past were that they required general anesthesia, as they are quite painful.  Newer techniques in regional prostate blocks have enabled the use of in-office, awake, transperineal approaches.”  Using the nerve block provides more protection from pain than local anesthetic alone.

This may prove to be the big selling point for many urologists, says Grummet.  “TR biopsy has been, certainly in Australia, a well-reimbursed procedure.  You can do it in five minutes in your office.  Because transperineal biopsy traditionally required a general anesthetic, it took longer and used hospital resources and personnel.  It has been less convenient.”

Although Gorin routinely does transperineal biopsy in the outpatient setting, using a nerve block and local anesthetic, it’s a little different in Australia.  In his home state of Victoria (over 5 million people), transperineal biopsy is more commonly performed than TR biopsy,” says Grummet.  “In our practice, no one gets a TR biopsy; the transperineal procedure is common across Australia.”  However, he adds, it is still done mainly in the hospital, under general anesthesia.  “Only a few of us over here have shifted to local anesthetic.  I have done only a handful with local anesthetic, and then COVID-19 hit,” and outpatient procedures were severely limited.  Now that the country is opening up, he plans to do more transperineal biopsies with the local anesthetic and nerve block.  “With the general anesthetic, transperineal biopsy is essentially perfect.  But with the local nerve block, even if the pain relief is not perfect, if the overall greater good is to avoid infection, that is by far a bigger win than some mild discomfort.  But if it’s too painful, we shouldn’t be doing it.”

Going in sideways:  But wait!  There’s more!  With Johns Hopkins urologist Mohamad Allaf, M.D., Gorin developed a technique to perform MRI-guided prostate biopsy through the transperineal approach that is “not only cleaner; there’s reason to believe the transperineal approach is more accurate,” better able to sample the prostate’s anterior region – the area where cancer commonly develops in African American men.  

Besides the risk of infection, there’s another big drawback to the TR approach:  it’s hard to cover the entire prostate.  Basically, as Schaeffer explains , if you think of a prostate as a house, the transrectal biopsy comes in from the basement.  It’s pretty good at reaching the main floor, but not that great at reaching the attic.  It’s a South to North approach.  The transperineal approach goes from West to East, and instead of a house, Gorin uses the analogy of a car:  “The needle comes in from the headlights to the tail lights, but it can go lower, from the front tires to the back tires, or higher, from the front windshield to the rear windshield.”

Is there a downside to the transperineal approach?  Although there is not any published evidence, Grummet says, “there seems to be increased scarring of the apex of the prostate in patients who have had transperineal biopsy.  That would make sense, because instead of moving the needle along the back of the prostate, which is what you do in TR biopsy, the needle in a transperineal biopsy is coming in at the apex.  I certainly haven’t seen any evidence that it actually affects the outcome of surgery.”  Another potential downside, as with TR biopsy, is of urinary retention, particularly in men with a large prostate who have more needle cores taken.  “The more cores you take, the more swelling there is.  Our published rate of retention is 2.5 percent; that is entirely reasonable.  Urinary retention is not life-threatening like sepsis is; you put a catheter in, and you take it out the next day.”  Another risk, as with the TR approach, is a “temporary, mild reduction of erectile function,” from inadvertently grazing the nerves involved in erection, “but this risk occurs in TR biopsy too.”

How can I get a transperineal biopsy?  Unless you live in Australia, or you happen to live near one of the few places in the U.S. where they are being performed, you probably can’t.  Yet.  But that is expected to change fairly soon.

Personal note here:  As I have written about earlier, a transperineal biopsy performed by Mike Gorin recently saved my husband’s life.  I am biased in favor of this approach, because several urologists have told me that because of its location in the anterior of the prostate, behind the urethra, Mark’s cancer would have been missed with a TR biopsy.  It was tiny, just 6 mm at the time of biopsy, 7 mm at the time of surgery, totally contained within the prostate, but very aggressive.  Gleason 9 cancer, diagnosed when he was just 58.  Thank God we got it out of there.   

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

 

Maybe you’re in your 50s, and your PSA is 3.  Maybe you’re in your 60s, and it’s 4.  Maybe you’re in your 40s, and it’s 2.  And maybe, unfortunately, your family doctor seems in no hurry to do anything about it, saying something complacent like, “Your PSA looks good,” or “the government guidelines don’t really recommend screening for prostate cancer, so we probably don’t even need to check it every year.”  Or, “You’ve got some enlargement of the prostate.  That’s probably what it is.”  Or, “It’s still pretty low.  Let’s just watch and see what it does.”

This makes me want to scream!  Right now I want to scream anyway, and cry.  I’m thinking a lot about one of the world’s nicest guys, whom I wrote about here, who was diagnosed at age 45, after many trips to the doctor for urinary problems, back pain, and other symptoms that should have raised red flags — especially because this man is Black, and automatically at higher risk for developing aggressive prostate cancer — but didn’t.  When he was diagnosed, his PSA was in the 200s, and the cancer was widely metastatic.  His wife, an amazing advocate and warrior for her husband, told me this week that he has now entered hospice care.  He should have started getting his PSA tested at age 40.  How different might his life be right now if his cancer had been diagnosed while it was confined to the prostate?  He was in and out of doctors’ offices for years, and nobody even looked at his PSA.

Dear Readers, I talk to a lot of men with prostate cancer.  Some of them have actually been diagnosed.  

Let’s just think about that for a minute.  So I’m going to tell you what I tell them.

Screening starts with the PSA test, and then it can escalate:  In our book, we talk about the great work by Johns Hopkins urologist Bal Carter, M.D., which I’ve also written about here, on PSA velocity.  Carter and my co-author, legendary Johns Hopkins urologist Patrick Walsh, M.D., were very troubled by a study showing that 15 percent of men with a PSA lower than 4 have cancer, and 15 percent of these men with cancer have high-grade cancer.  That’s because there is no safe, absolute cutoff above a PSA level of 1.0 where a man can rest assured that he is not harboring a high-grade prostate cancer that needs to be treated.  There’s just no guarantee.

The PSA number itself is not as important as what that number does over time, how fast it changes; this is PSA velocity.  But there are some numbers for men younger than 60 that are helpful as reference points: that is, whether you are above or below the 50th percentile for your age.  If you’re below the 50th percentile for your age, you may not need to take a PSA test every year — although, frankly, men, it’s a simple blood test, and if you’re getting your cholesterol checked, then what the heck?  Your blood is there at the lab anyway!  Get the PSA checked!  But if you’re above the 50th percentile for your age, you should have your PSA measured at least every two years during your 40s, and every year from age 50 on.  Men in their 40s who have a PSA level greater than 0.6 ng/ml are in this group, as are men in their 50s who have a PSA greater than 0.7.  Those are Carter’s numbers; in a large study, urologists Stacy Loeb, M.D., of New York University and the Manhattan Veterans Affairs (see below) and William Catalona, M.D., of Northwestern University, found the comparable numbers to be slightly higher, 0.7 for men in their 40s and 0.9 for men in their 50s.  What about men older than 60?  One study showed that 2.6 was a good PSA cutoff point.  This is still a lot lower number than many doctors seem to be troubled by.

Maybe it’s because they don’t want to put a man through a prostate biopsy if it’s not necessary.  Well, sure, that makes sense.  But what many family doctors don’t seem to realize is that times have changed!  Good news:  You don’t have to move directly to having needles stuck in your prostate!  It’s not the Monopoly bad-case-scenario of “Do not pass Go, do not collect $200!”  There is a next step!  It’s a “second-line” test:  a blood or urine test that can provide other layers of information beyond the basic PSA test.  There are several good ones out there.  Which one do you need?  Well, as Marlon Brando said in the classic 1953 movie, The Wild One:  “Whadya got?”

There’s no shortage of options!  There are blood tests that provide more nuanced information than the basic PSA test, plus urine tests and even, if you’ve already had a biopsy, molecular biomarker tests, which aren’t done on body fluids but on tissue samples.  These tests can be helpful, not only in diagnosing cancer, but in risk stratification – predicting which cancer is more likely to be aggressive, and which cancer is less likely to need immediate treatment.

Helping us navigate these options is New York urologist Stacy Loeb, whom I recently interviewed for the Prostate Cancer Foundation.  “First and foremost,” Loeb says, “if a patient has an elevated PSA, the thing to do is to repeat the PSA test at the same lab.  It may feel like backtracking, but step one is to confirm that it even is elevated.”  This is why using the same lab as you’ve used in previous PSA tests is important; what might seem to be a rising PSA might just be a normal fluctuation between labs using different equipment.

However, Loeb adds, “many urologists will order the repeat test as a Free and Total PSA blood test,” because this test is inexpensive and readily available, and because it provides some additional information.   “Free PSA measures whatever PSA in the blood that is not bound to proteins.  The higher percentage of PSA that is free, the more likely you are to be free from cancer.”  This test provides context:  If the percentage of free PSA is higher than 25, then the elevated PSA is more likely to be caused by BPH, benign enlargement of the prostate.  If it’s lower than 25 percent, this doesn’t automatically mean that there’s cancer, but it does raise the likelihood that cancer may be present.

“It’s also important to rule out other causes of an elevated PSA.”  Having prostatitis can raise your PSA; so can having a urinary tract infection.  So can having sex within three days before getting your blood test, because sexual activity stimulates the prostate, which then can release more PSA into the blood.  Similarly – a big oops here for the doctor!getting your blood drawn after the rectal exam, which stimulates the prostate and shoots PSA out into the blood stream, can make your PSA level temporarily higher.

And then there’s MRI.   “In our practice,” says Loeb, “we’re getting MRIs as the next step for patients who have an elevated PSA.  If the MRI shows a suspicious lesion, we recommend a targeted biopsy.  If the MRI is not suspicious, but we’re still worried because of the patient’s PSA and clinical picture, in that context, a biomarker test could potentially give the extra data point that could help us proceed with a biopsy anyway.  What’s nice about MRI is that it shows us suspicious areas – so in addition to providing information on the risk that significant cancer is present, it also gives us some information on where to look.  The data are very clear that performing targeted biopsies based on MRI findings is a superior strategy to only performing biopsies that sample various locations all around the prostate,” in which cancer is easy to miss.  Note:  The power of the magnet in MRI makes a difference; the stronger the magnet, the better the picture and the more the doctor can see.  You want a 3 Tesla (3T) MRI, not 1.5.

Now, about those other blood tests:  In addition to the free PSA test, here are two more that include free and total PSA, but look for other factors, as well:

PHI (Prostate Health Index):  PHI not only helps determine if cancer is present; it also can predict the likelihood of finding high-grade cancer on a prostate biopsy.  “PHI also predicts the likelihood of progression during active surveillance,” says Loeb, who with Catalona reviewed the effectiveness of PHI for the journal Urology.   “PHI is a simple and inexpensive blood test that can be used not only for biopsy decisions, but for risk stratification and treatment decision-making.” In a Johns Hopkins-led study, PHI outperformed PSA in predicting prostate cancer in general, but proved especially helpful in finding clinically significant (higher Gleason grade) cancer.  It was even better when combined with MRI; in the study, no men who had a PHI score lower than 27 and a PI-RADS of 3 or lower had clinically significant cancer.  For men who went on to have prostatectomy, a higher PHI score was associated with a higher Gleason grade of cancer and pathologic stage.   PHI also provided discernment, reduced the number of men who needed biopsies without overlooking clinically significant cancer.

4K score:  This blood test combines four prostate-specific biomarkers (three forms of PSA and also human kallikrein 2, a protein made by cells lining the prostate), plus clinical factors including age, to assess a man’s likelihood of having high-grade prostate cancer found at biopsy.  Studies at UCSF, reported in the Journal of Urology, evaluated 4K score and a prostate MRI scan, both for their ability to detect high-grade prostate cancer and to help patients avoid unnecessary biopsies.   “Both of these tests can predict the risk of finding a clinically significant prostate cancer,” cancer that needs to be treated. They found that MRI was a more able predictor of high-grade prostate cancer than the 4K score – however, MRI was not sensitive enough to detect all high-grade prostate cancer, “and 4K testing alone could be sufficient as the initial tool to select patients who may benefit from a biopsy.”  But even better, they found, was combining 4K and MRI:  “Using higher 4K cut points such as greater than 15, combined with MRI… allows for more avoided unnecessary biopsies with minimal missed high-grade prostate cancer cases.”

Loeb adds:  “About 12 percent of the time, MRI can miss something.  So, if we still suspect that cancer may be hiding, that’s a good case for using a biomarker test” like PHI or 4K.  “With a biomarker test and MRI combined, the chance of missing a significant cancer is exceedingly low.”

Urine tests:  One urine test, EPI, is done using a fresh-catch urine specimen.  This test can help predict clinically significant prostate cancer in men who have not yet had a biopsy.  Another, the PCA3 test, is done after “a vigorous rectal exam,” says Loeb.  It looks for mRNA levels of a marker, called prostate cancer gene 3, to help rule out other causes of an elevated PSA test, such as BPH or prostatitis.  “It’s FDA approved for use in men who have had a negative biopsy.”  Then there’s Select MDx, which measures mRNA levels of two biomarkers commonly expressed in prostate cancer, and MiPS, developed at the University of Michigan, which combines PSA with two biomarkers for prostate cancer.  “More head-to-head data is needed comparing all of the different blood and urine markers to find out which is best in different patient scenarios,” says Loeb.

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

 

They lost each other, and found each other again.  They’re in this for the long haul.  No way is prostate cancer going to change that.

One of the best things about writing for the Prostate Cancer Foundation is the opportunity to meet amazing, unforgettable people.  There are two exceptional people in this story: one is Milton, who is fighting prostate cancer.  The other is Shawni, who is not only his wife:  she will tell you that she is his “battle mate.”  Previously, I said that every patient needs a treatment warrior – an advocate.  Milton has one of the strongest treatment warriors ever.  He is a mighty warrior, too.  I was privileged to interview them both.

Milton and Shawni Wilborn met in high school more than 30 years ago, but they weren’t high school sweethearts – although, they found out later, they both wanted to be.   “She was seeing someone else,” says Milton.  “I’d always try to talk to her; she would just giggle.  She wouldn’t talk to me – just giggle, giggle.  Sophomore year, junior year.  Senior year was the first time I got her in a conversation.  Before I left to go to the Army, I wrote her a letter and told her how much I liked her.”  In the letter, Milton invited her to a party, and said he hoped she would come.

Shawni never got the letter.  “Her dad intercepted the mail.”  Then, one day while she was doing laundry, she found it.  “She cried.  She was so mad because, unbeknownst to me, she really liked me – but was just scared to tell me.”  They each moved on.  But years later, single again, Shawni would tell her daughter, “I met a guy in high school, and who knows, maybe it could have worked out.”

Meanwhile, Milton got married and had two kids, a daughter and son.  “I went to my 10-year reunion.  I’m married,” and when he saw Shawni, “she had this look on her face.  I was like, ‘Oh, wow, you shoulda said something.’”  At the 20-year reunion, Milton was not married any more, but Shawni didn’t come.  However, she heard that he had been there, alone.  They found each other on Facebook.  She was still in their hometown of Pomona, California, and Milton was in Virginia.  They started a long-distance relationship.  “That’s how we rekindled, how we came to be now.”

Shawni moved to Virginia to be with Milton in the Spring of 2015.

Unfortunately, “that’s when my prostate issues started.  Maybe they were already going on, but I didn’t know.”

The first time he noticed something was not right, Milton was at the gym, working out.  “I always worked out, always exercised, always kept myself in shape.”  He did a “boxer’s workout,” with weights, calisthenics, jump rope, and the elliptical.  One day, he thought, “Man, I’m picking up weight!  So I stopped doing the elliptical and started jogging on the treadmill.  Shawni was getting ready to move from California, and I’m hitting the gym extra hard,” to look his best for her.  His left thigh started hurting, and the pain persisted.  He started taking Motrin, although at the time, he thought, “I’m not going to be taking no pills every day!”

The Motrin helped, but the pain from his thigh moved to his hip.  Milton powered through, at the gym and at his two jobs: at the barber shop and at the garage door company he owns.  He did activities with his son, who was in high school, and his daughter, who was in middle school.  The lower left side of his back started hurting, too.  In October 2015, Milton, who is a Mason, went to a Masonic convention in Hampton, Va.  He was feeling sick, so he took some cold medicine.  “The next morning, I couldn’t go to the bathroom.  I couldn’t urinate.  I was in so much pain.”  He went to the VA hospital in Hampton.  “They gave me a catheter.  The doctor comes back and says, ‘You must have taken a lot of cold medicine.  You know, if you have prostate issues, you have to be careful with this medicine.”  But Milton didn’t have prostate issues; he was way too young.

Milton went home and had the catheter removed in Fort Belvoir, Va.  The pain persisted, and he escalated to using a heating pad and taking Motrin.

Soon afterward, he started having trouble with frequent urination – needing to go every five or 10 minutes.  He went back to the hospital, where they checked him for diabetes.  Some of the symptoms sounded like diabetes – frequent urination, weight gain, lower back pain.  “They gave me some medication for the pain, and pills for the urination.”

A few weeks later, the pain in his back was no better.  “It was just killing me.”  At the hospital, they recommended that he try ice instead of heat for the inflammation in his back.  “They gave me a couple ice packs, and sure enough, after a while, the ice took the pain away.  I left there, kept working, then I’d go home and put an ice pack on.”  Shawni was working nights at the time.  “That’s what we did.”  October, November, December.  Milton was getting fed up; the pain wasn’t getting better.

“I told you something was wrong.”

In January, he decided to get a physical.  Monday, January 11, 2016, his 45th birthday, he went to the urology clinic at Fort Belvoir.  The nurse said, “Have you ever had your PSA checked?  You’re an African American male.  You need to know what your PSA is.”  He had his blood drawn.   They told him his labs were normal.

Three days later, on Thursday, they called him back.  “They said my PSA was extremely high, in the 200s, and the pain in my back was due to my prostate.”  He went back to the hospital.   A urologist at the clinic said, “’I’m sorry to tell you, you have prostate cancer.  There’s nothing more we can do for you here.  Do you have any questions?’”

Oh yes, Milton had questions.  “Last week, they said everything was fine.  This week they’re telling me I’ve got cancer.  No way!  Bull crap!”  Shawni was crying.  “I said, ‘I told you a long time ago, something was wrong!’”  The urologist said, “‘I’m so sorry, there’s nothing more we can do.’  I was cursing, being upset.”  The urologist told Milton that he could have his testicles surgically removed to stop him from producing testosterone.  “There’s nothing more we can do for you here.  Go to oncology.  Maybe they can do something for you.  I’m so sorry.”

“That was it,” Milton says.  “Not sympathy, and no compassion.  Just ‘we can’t do anything else for you.’”  He went to oncology.  “Sign in, wait, get triaged, take vital signs. The pain’s a 10, kidney pain, back pain.  The doctor comes in and says, ‘Your prostate cancer has already spread outside the prostate.  We can’t cure it.  However, we can get control over it by giving you hormonal therapy.  We can give you a shot in the stomach, every three months.  That will help stop you from producing testosterone.”  They gave him some steroids for 14 days, and told him to come back after that to start chemotherapy, with taxotere.  “So that’s what we did.”  They gave him morphine for the pain.

In the two weeks since his first PSA test, his PSA had more than doubled, to 548.

“We prayed, and cried.  I called my mom.  My dad wasn’t doing well, and my mom was taking care of him.” Shawni called her parents.  They told their four kids, who took the news hard.  “Our two oldest girls are living in Texas, our son had just graduated high school and was set to go off in the military.  Our youngest daughter was getting ready to be a freshman in high school.  It was a really tough time.”  Milton started chemo, and he kept on working.  He had a Picc line placed in his bicep, so he wouldn’t damage his veins from the chemo.

The chemo made him sick.  It lowered his white blood cell count, made him throw up.  He lost his hair – on his head, his body, his eyebrows.  But he stayed focused on getting better.

“Cancer is by no means going to tear us down.” 

Milton talked to his pastor, and they prayed for him to stay strong.  He also focused on gratitude.  “You come across people who are just taking their life for granted, complaining about some of the craziest things.  You just don’t know.  You don’t know how blessed you are.”

He and Shawni got married in 2017.  “She took care of me.  She’s been by my side the entire way.  She’s been my angel, my nurse, my caregiver, by my side for it all.  She’s everything to me.

“I always try to let her know nothing can stop us.  We can’t let lack of communication or something else bother us, because we’re bigger than that.  We’ve been through tougher days and back.  We just push on.  We fight.  We fight and fight and fight.  Cancer is by no means going to tear us down.” 

Shawni could have bailed out, Milton says.  But she didn’t, and she wouldn’t.  “I wouldn’t fault her for it,” says Milton.  “I’ve caught her crying.  I say, ‘What’s wrong?’ ‘Oh, nothing.’  ‘Yeah, right.’”

Sometimes, he says, life just gives you a journey and a path to walk on.  “This is my journey.  This is my path.  We’re going to keep on walking it, keep on fighting.

It’ll be all right.”

They both like Steven Krasnow, M.D., Milton’s oncologist at the Washington, D.C., VA Medical Center, very much.  “He’s just been awesome.  I’ve got the best doctor in the hospital looking after me.  The nurses who take care of me, they’re awesome.  They care.”

Milton and Shawni try to give back, to help other cancer patients they see at the VA.  “I’m 48,” says Milton.  “I don’t look 48; I look probably 40.  Shawni’s 47, and she looks 30-something.  We look pretty good for our age.  People are always surprised to see us in oncology.”  Shawni says, “People will ask, ‘Oh, are you here with your grandfather?’ I say I’m here with my husband.”

“Treat him as if he’s going to live forever.”

Shawni and Milton didn’t know about the levels of prostate cancer until the physician’s assistant (PA) happened to close the door in the office, and they saw a poster of prostate cancer and all its stages.  “We were both looking at it, reading what each stage is,” says Shawni.  When the PA came back in, they asked about Milton.  “’He’s stage 4.’  It was like the air got knocked out of us.  People hear stage 4, and automatically think that person is terminal.

“From that point, we told Dr. Krasnow, we don’t want to know the time frame.  We just want you to treat him as if he’s going to live forever.  How long does he have?  He has forever.  Once people start hearing the diagnosis, it’s like they start living by a calendar.  Life slowly starts to deteriorate.  We never discuss that with anyone.  They all know not to talk about time frames with us.  We’ve seen people come and go in the office.  He’ll talk to the cancer patients when they’re in chemo.  I give the caregivers my story.  We try to be positive, to be uplifting as much as we can.”

Says Milton:  “God put me in a position to be able to tell my story.”  He is determined to remain thankful.  “I have a song that I play, when my alarm for medication goes off.  It’s the Clark Sisters, ‘I’m Looking for a Miracle.’”  The lyrics include these words:  “I expect the impossible.  I feel the intangible and I see the invisible.  The sky is the limit.”

“She wiped my tears away.”

Says Milton:  “That song is just so beautiful to me.  It gives me a reason to keep pushing.”  It’s on his playlist, on repeat, when he’s getting the chemo.  “A year ago, I did a 5K walk and run down in Virginia Beach for Prostate Cancer awareness.  I was hurting.  I put that song on.”  His son and Shawni were on the sidelines, cheering him on.  “I just kept on pushing to the finish line.  One hour, 14 minutes.”

In September 2019, Milton was in the hospital for back pain.  It was Sunday.  He was on his iPad, getting ready for the live-stream service of his church in Dumfries, Virginia – his “bedside Baptist,” he jokes.  “I just heard this crunch, just from the base of my neck up into my head.  I’m just holding my neck, like you’re doing sit-ups.”  He wrapped a rolled-up towel around his neck, “made my own neck brace.”  A CT scan later revealed a fractured C2 vertebrae.  “The cancer is in my neck, back, shoulders, hips, thighs, and my ribs.”

Milton says he got mad.  This happened while he was just sitting there!  “I didn’t question God, anything like that.  I was just mad.”  Shawni was crying, but she told him, “It’s going to be okay.  She saved her tears for later, and she wiped my tears away.  For four years, we’ve been fighting this.”

Milton hopes to take part in a clinical trial.  He went through a painful bone marrow biopsy to be eligible for a radionuclide trial, but “they only needed 800 people,” and 1,000 applied.  Milton didn’t get in.   He is being treated with radium-223, which treats the cancer in his bones.  “Everywhere the cancer is or has been, it causes so much pain.  But I can’t complain too much.  I keep pushing through.”

Their faith – in God, and in each other – keeps them going.  “It’s crazy to say this,” says Milton, “but for things to be so bad, it also turned out to be so good, because there are so many things that I guess people take for granted.  So many things I’ve learned about myself, so many things I’ve learned about my faith in God.”  He refers to the parable of the mustard seed in the Bible.   “A mustard seed is pretty small, not much bigger than a grain of salt.  Just believe this much, God is saying.

“We stop and remind ourselves where we’re at, and what we’ve been through,” how glad they are that they found each other again.  “Sometimes we forget how lucky we are, and we remind each other how blessed we are, how grateful we are that God has given us this challenge.  He says all you’ve got to do is just believe.  Live right.  Treat people right.  I just need you to take care of these things right here, and I’ll take care of the rest.  Everything’s going to be okay.  We just keep pushing.”

Note: Less than a year after I wrote this story, Milton entered hospice care.  Shawni said at the time, “I feel like my heart is slowly being torn to pieces.”  A few weeks later, he died of prostate cancer, and those of us at PCF who had been fortunate enough to get to know them, and who had been praying for them and trying so hard to find a clinical trial or something that might help Milton felt torn to pieces, too.

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

 

 

I would like to begin this story with two words for the U.S. Preventive Services Task Force (USPSTF), the inept brain trust whose misguided advice in 2012 stopped millions of men from routine screening for prostate cancer.  Coincidentally, there was an upswing in men – including guys in their 40s and 50s –  who were diagnosed with cancer that had escaped the prostate.  Cancer that is difficult or impossible to cure.  Cancer that could have been cured, if their doctors had only looked for it and diagnosed it earlier.  The USPSTF has changed these disastrous recommendations slightly, but no one would call them pro-screening.

Unfortunately, because this is a family-friendly website, I can’t say those particular two words, so I will say these instead:  You’re Wrong.

            Screening saves lives.  I know this first-hand.

Five members of my family have been affected by prostate cancer, which I’ve discussed here.  My husband’s father died of metastatic prostate cancer; my grandfather and my husband’s grandfather died of complications from treatment for prostate cancer – treatment they probably didn’t even need.  Because of prostate cancer screening, and a world-renowned Johns Hopkins urologist named Patrick Walsh, my dad’s Gleason 7 prostate cancer was caught early and successfully treated with surgery 22 years ago.  He’s still here, and doing great.

For 28 years, we have been worrying about my husband, Mark, because of his family history.  We started screening for prostate cancer when he turned 40.  Recently, at age 58, he was diagnosed – an amazing story, told here– with high-risk, Gleason 9 prostate cancer, the second-most aggressive stage there is.

Less than a week ago, Mark had his prostate removed by a world-class surgeon, trained by Walsh:  Mohamed Allaf of Johns Hopkins.  We got the pathology back yesterday, from another world-class Johns Hopkins physician, urological pathologist Jonathan Epstein – the same pathologist, incidentally, who analyzed my dad’s prostate biopsy and prostate tissue after his surgery; the same pathologist who confirmed that Mark’s biopsy showed aggressive Gleason 9 (4 + 5) cancer.  The tumor was bigger than we thought in the biopsy – 7 mm instead of 6 – but still, the size of a smallish bead on a necklace.  Here’s how he explained it:  “Basically it’s a relatively small 4+5=9 (7.0 mm) which is only 5% pattern 5 and all tumor organ-confined, margin negative.  So for a 4+5=9, it’s the best possible scenario.”

(Brief digression:  The Gleason grading system is named for the Veterans Administration pathologist named Donald Gleason, who cracked the code of how to understand prostate cancer, which had baffled pathologists for decades.  What Epstein did was look at all the cancer cells in the prostate tissue he saw.  Prostate cancer cells come in five basic patterns of aggressiveness, with pattern 5 being the most aggressive.  He figured out which pattern was most common:  in Mark’s case, it was pattern 4; the second most common was pattern 5.  Thus, the reading is 4+5=9.)

Here’s the translation of what Epstein reported:  Of that tiny tumor, only 5 percent of it was the really aggressive cancer, Gleason pattern 5.  The entire cancer was confined within the prostate.  The surgical margins, the edges of tissue that were cut away, were negative; that means the cancer had not spread to the edges of the prostate.  He also found no cancer in the seminal vesicles or lymph nodes removed during surgery.

It’s gone.   What was supposed to happen, has happened.  We caught it early, and took it out.  Thank God!

This is why we checked his PSA for 18 years.  This is why we make sure Mark’s brother is checking his PSA.  This is why I will be on my sons like the proverbial duck on a June bug from their mid-thirties onward, making sure they get a baseline PSA and then, depending on what that is, getting regular screening.

Already, that low-level dread that we had been carrying around for years is going away.  The fear that gripped us hard when we heard the words “Gleason 9” is easing up.  Mark has two more days of being on a catheter as his body heals from the surgery, and then he will start to recover, and get his life back.

I’m telling you this because this is what I want for you.

The week before the surgery, I did an interview with a patient for my job at the Prostate Cancer Foundation (PCF).  It was tough, and the timing couldn’t have been worse.  I spent an hour and 40 minutes talking with one of the nicest guys I have ever met, who is very sick with metastatic prostate cancer.   He is 48.  He was diagnosed at age 45, when the cancer had already spread to his bones.  He was a newlywed at the time, with one kid in middle school and the other in high school.  I am hoping, with the help of the good people in the Prostate Cancer Foundation, to get him into a clinical trial – anything that will help prolong his life and improve his quality of life.   He is a black man, and black men, of all men in the world, have the highest risk of getting prostate cancer, and of dying from it.  Nobody looked for his cancer, because they thought he was too young.  They should have known better.  His doctor should have been checking him from age 40 with a freaking simple blood test that could have spared him all this suffering. When they finally checked his PSA, it was in the 200s.  A few weeks later, it was in the 400s.

There are a few other things I hope you will take away from this:

You can’t count on doctors to check your prostate for you.  Some of them still believe the bad advice from the USPSTF.  Some of them have been swayed by the prostate cancer version of anti-vaxxers, who think, “You can live for years with prostate cancer.  You don’t need to be screened.  The treatment is worse than having the disease.”

Patrick Walsh said, “If it weren’t for incontinence and impotence, this wouldn’t be controversial.”  The problem is that this is a difficult operation.  Unfortunately, there is a huge variability in quality of surgeons.  Great surgeons have great outcomes.  Mediocre and poor surgeons have worse outcomes.  If surgery is the best option for you, your best bet is to find the best surgeon you can, and these are almost always at high-volume centers, places where they do a lot of these operations and are good at it.  Mo Allaf at Johns Hopkins is one; Edward Schaeffer at Northwestern University is another.  Here’s an article I did for the PCF on how to find an expert surgeon; it includes helpful links and things to look for.  You owe it to yourself to do your due diligence. 

If you are getting a regular physical, and they’re checking your cholesterol and looking for diabetes and all the other stuff they can mark with the flick of a pen on the order for the lab, then by golly, they can check your PSA.

PSA velocity is the key.  You have to watch what the PSA does over time, and this is especially helpful in men with a low PSA.  You can read more about PSA velocity here.

You can have a low PSA and a high grade of cancer.  Again, the numbers themselves don’t always tell the whole story.  That’s why, once again, I’m begging you:  If your doctor says, “The PSA is low, so no worries,” don’t just accept it.  You have to look at the PSA velocity – whether that number stays about the same, or whether it’s changing.  Mark’s PSA went up in two months from 2 to 3 — but it was still considered “normal.”   My dad’s PSA was only 1.2, but he had Gleason 7 cancer.  Bottom line:  “normal” is kind of a myth.

Even if it’s high-grade cancer, if you catch it early, you can be cured!  Maybe you have prostate cancer in your family.  Maybe some men in your family have died of it.  You can break the cycle.  But you can’t be cured if your cancer is not detected, and cancer can’t be detected if you don’t look for it, and the best way to look for it is routine screening. 

Some doctors say start in your fifties if you’re at “average risk.”  I say start in your early forties.  Get a baseline PSA.  (Also, it’s best to get your tests all done at the same lab, because there are slight variations from lab to lab.)  Then, if the number is very low, you might not need to get another test for two to five years – but at least you’ll have something to compare it to.

Other reasons to get that baseline test, even if you don’t think you’re at risk:  Well, for one thing, you might not know your entire family history.  Men traditionally haven’t talked about prostate cancer, and there are more men out there than you may think who get diagnosed and then happen to find out, “Oh, yeah, your uncle had that.”  Or, “Dad had it, but he didn’t want you to know he had incontinence.”  I have talked to several men who had no idea that prostate cancer was already in their families.  And then there are people like Rob Gray, whose family history changed in real time as he was being screened for prostate cancer.  He was high-risk, but he didn’t know it, until several men in his family were diagnosed with it.  Also, if you smoke or are overweight, your risk is higher – even though you may still, to your family physician, be in the “average risk” category.  Better safe than sorry.

To the doctors out there who worry about unnecessary biopsies and unnecessary treatment, I say, “You have a point.  This was a big problem, but over the last 15 years, it’s gotten a lot better.”  MRI is not invasive.  “Second-tier” blood tests, like a free PSA test, or a Prostate Health Index (PHI) test, can help determine if the PSA is elevated because of benign enlargement, or cancer, and can help avoid unnecessary biopsies; I will be writing more about this in a future post.  The transperineal biopsy is safer than the transrectal biopsy.  There is no risk of infection, no need for antibiotics, and it actually samples more of the prostate than the traditional approach.

A diagnosis of prostate cancer doesn’t mean you need to get treatment right away, or at all.  If you are diagnosed with Gleason 6 disease, you may be able to do active surveillance for years, or maybe even forever, if your cancer is determined to be low-risk.

But if you have the kind of cancer that needs to be treated, cancer that could kill you, just ticking away silently in your prostate, it is infinitely better to catch it early and cure it while it’s contained in the prostate.  Men who have been diagnosed when the cancer is in their spine, their hips, their legs, their liver, their brain, would give anything to be in your shoes.

 

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