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Treatment Warriors

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

 

 

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The Way Back to Robust

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

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

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

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

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

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

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

“Out of the Blue”

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

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

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

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

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

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

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

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

The Danger Zone

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

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

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

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

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

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

Off to the Races!

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

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

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

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

©Janet Farrar Worthington

 

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Even the Deadliest Prostate Cancer Can be Cured, if Caught Early! 

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

 

 

 

 

 

 

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One Man’s Prostate Cancer Journey

In 2013, Allan Odden was 70, newly retired from a career as a college professor, in good health, walking four miles a day, playing golf and bridge, and ready to enjoy many more years with his wife, Eleanor.  When he went for his yearly physical, his doctor asked if he wanted a PSA test to check for prostate cancer.  He had last had one in 2011, and it was low: 1.4 ng/ml.

Allan wondered why his doctor asked him if he wanted the test.  He recalls:  “The doctor said, “Well, if it is rising, I’m not sure what I’d tell you, as there is no really good result from treatment; everyone pretty much gets some level of incontinence and impotence if they need treatment for prostate cancer,” a generalization with which many urologists and radiation oncologists (particularly those at high-volume centers who have expertise in treating men with prostate cancer) would disagree.  “The medical recommendation these days is that men 70 or older do not need to get their PSA; if they have prostate cancer, which most men do by the time they die, it is usually very slow-growing, so most men outlive it.  And there are too many false positives from the PSA test.  Too many men see a rising PSA, get the prostate surgically removed or (ir)radiated, and have some degree of incontinence and impotence when they really didn’t have a cancer that would grow and, thus, needed to be treated.”

Let’s hold up here for a minute.

This is not good advice.  First, many men completely recover urinary continence and, with help from pills such as Viagra or from other forms of treatment, deal successfully with erectile dysfunction (ED), if one or both of the nerve bundles that are responsible for erection are left intact.  (Note:  If you have had surgery for prostate cancer and have lingering incontinence or trouble with ED, don’t despair.  There is help available.  Talk to your urologist.  As we say in the book, where there’s a will, there’s a way.)

Second, this sentence: “And the medical recommendation these days is that men 70 or older do not need to get their PSA; if they have prostate cancer, which most men do by the time they die, it is usually very slow-growing, so most men outlive it.”  WRONG.  Most men don’t have prostate cancer by the time they die, although most men do have prostate trouble – benign prostatic enlargement (BPH).  In fact; 50 percent of men age 50 have it, 60 percent of men age 60 have it, 70 percent of men age 70 have it, and 80 percent of men age 80 have it.  But that’s not prostate cancer.  Sheesh!

However:  As Johns Hopkins physicians recently found looking at population studies, men diagnosed at age 75 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.  I have discussed this study and screening for older men here.

And finally, yes, the part about the PSA test was true – in the 1990s.  Now there are “second-tier” PSA tests to help tell whether an elevated or rising PSA is more likely to be coming from cancer or BPH.  One is the free PSA test; another is called the Prostate Health Index (PHI) test.  There are more; I will cover these in a new post.  These new tests, along with prostate MRI, have helped weed out which men really need a prostate biopsy, and which men who have cancer actually need treatment.  For many men diagnosed with Gleason 6 prostate cancer, active (vigilant) surveillance is a good option.

Fortunately, Allan didn’t turn down the test.  His PSA had gone up to 2.53.  The next PSA, a few months later, was 4.29.  The next one, in 2015, was 5.04.  But he was told not to “rush to judgment.”  To wait and see.  By the fall of 2017, his PSA had risen above 7.  “My internist said it was now time for me to see the urologist.”  Finally, he got the free PSA test – and his free PSA was very low.  Then he had an MRI, which showed three possible lesions that could be cancer; some of these spots had Gleason 3 + 3 cancer, and a couple had Gleason 3 + 4 cancer.  The doctor strongly recommended treatment sooner rather than later – either surgical removal or radiation.  Allan chose surgery.  The surgery went well, although the surgeon told him that his cancer had grown a bit and the prostate sac had “bulged” a bit – but the lymph nodes were cancer-free.  Incontinence afterward was a challenge, but Allan did Kegels and other exercises and regained bladder control.

A month after the surgery, his PSA, which was supposed to be undetectable, was 0.12, and the pathology report had found that “microscopic amounts of cancer, not visible to the naked eye, had escaped the prostate sac around the area of the bulge.”  The PSA, though low, had doubled by December.  Allan made an appointment to see a radiation oncologist, who (after a bone scan and MRIs of his abdomen and pelvis showed no cancer) recommended a short course of hormonal therapy (ADT) as well as eight weeks of radiation.

The radiation treatment itself, Allan found, was “a piece of cake.”  Five minutes a day, for 39 days.  However, getting ready for that five minutes each day proved more challenging.

“Low Residue” Diet

A nurse educator told Allan that he needed to go on a “low residue” diet.   Allan, who has written a book about his prostate cancer journey, is funny, analytical, and heartfelt.  He relates this conversation:  “She said that means a diet with very little fiber, as the goal for the radiation was to have as clear a colon as possible.  And then I said that I’ve been told for years to eat lots of fiber, in order to be regular, which would then clear my bowel so it would be perfect for the radiation treatment.  But not perfect enough, she insisted.  She continued by saying you should eat very little fiber, no bran flakes, no oatmeal, no raw vegetables, no whole grain bread or crackers, no prunes or prune juice, no fruit with skin or seeds, etc.”  No eating, pretty much, any of my actual diet!

What could he eat?  White bread, white rice, white pasta, mashed white potatoes, super-cooked vegetables with the skins removed, no beans or peas, “as they cause gas and would inflate the colon, pushing it near the prostate area,” clear juice, canned fruit and veggies, etc.  “I looked at her like she was crazy, and she said, ‘I’m not your cardiologist, and this is just for eight weeks of radiation.’”  Allan worried about constipation from a diet that would produce “Elmer’s Glue in my gut,” and “she said that over time, it wouldn’t do that and would make me regular.  She said I just needed to trust her…  And then she said, ‘Oh, there is one more thing.  While we want an empty colon, we also want a full bladder.  And this is what you need to do: empty your bladder 60 minutes before your radiation appointment and then drink 24-32 ounces of fluid so when you get here, you’ll have a full bladder.’”

Not what a man who has just relearned how to control his urinary sphincter wants to hear.  But Allan managed it.  Armed with literature from the nurse showing the fiber content of various foods, “I found canned soups with zero fiber.  I found crackers, even tasty crackers, with zero fiber or less than 1 fiber in a four-cracker serving.  English muffins, made with processed white flour, have very little fiber.  Most fruits have a lot of fiber, but honeydew melon does not, so I bought one.  I bought Rice Crispies instead of Bran Buds and Rice Chex instead of Shredded Wheat.  I decided to have lots of fish, as that is easy to digest (and I needed a successful bowel movement every day before 9:30, as my radiation appointment was for 10:30).  Eggs are low in fiber.

“Weird though it was, the diet actually worked.  I did stay regular, the solid waste was much less, the stools were smaller though more difficult to exit the body.  The nurse was right.”

Arriving with a full bladder made for some white-knuckle rides on the express bus to the hospital, but he managed that, too.   “I was a very fortunate man to have had very few side effects,” he says.  During the course of his treatment, “I also continued my other activities – bridge two days a week, dance lessons two days a week, and golf on Tuesday morning.  And now my chances of success were well over 95 percent and my PSA was already reading zero.”

On the last day of his treatment, Allan rang the gong in the radiation center – a celebration ritual – and posed for pictures with some of the staff he had come to know over the last two months.  He is now ready, he says, “to enjoy every minute of the rest of my life.”

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

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Do Older Men Still Need a PSA Test?

I’m in my seventies.  My doctor said I don’t need any more PSA tests because I’m too old to worry about it.  Is that right? 

It depends on you and your PSA history.  There are some troubling statistics, which I will get to in a minute.  But first the good news:  If you are in your 70s, and your PSA is very low (how low? see below) and has been for years, you are probably unlikely to develop lethal prostate cancer.  H. Ballentine Carter, M.D., the Johns Hopkins urologist who dedicated his career to studying PSA and who came up with the concept of PSA velocity, asked this question using data from the Baltimore Longitudinal Study of Aging (BLSA):

Is your PSA track record good?  Basically, Carter looked at decades of blood samples from the same group of men, and saw which men developed prostate cancer, low-risk and high-risk, who died of prostate cancer, and who never developed it at all.  He also had been studying medical literature on other types of cancer.  In a recent interview for Discovery, the magazine for the Brady Urological Institute at Johns Hopkins, he told me:  “It just dawned on me, mainly from cervical cancer screening literature:  What if very young men have PSA levels that are extremely low, and have cumulative numbers of negative tests.  Would that suggest later in life that they are very low-risk?  As it turns out, if you’re in your 50s or early 60s and you have very low PSA, it’s unlikely that you’re going to be diagnosed with prostate cancer later in life.”  (Note: He’s NOT saying, “Stop getting screened in your 50s or early 60s!”) “Is there an age and a PSA level where you could tell an older man, ‘Congratulations, you made it, you don’t ever need to have a PSA test again?”  Sure enough, you reach an age around 75, and your PSA is less than 3, it is extremely unlikely that you will be diagnosed with lethal prostate cancer.” 

In our book, we say:  “If your PSA track record is good, you can probably retire earlier from PSA screening.”  So what does this mean?  Carter showed that if PSA testing were discontinued at age 65 in men who had PSA levels below 0.5 to 1.0 ng/ml, it would be unlikely that prostate cancer would be missed later in life.  In another study, Carter and colleagues found that it is safe to discontinue PSA testing for 75- to 80-year-old men with PSA levels lower than 3; none of the men in that study later died from prostate cancer.  However, the 75- to 80-year-old men who had PSA levels greater than 3 remained at risk of developing life-threatening disease.

Now, here’s the troubling point, which we discuss in our book:  Population studies have shown that men diagnosed at age 75 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.

How can this be? Another Johns Hopkins study, led by my co-author, urologist Patrick Walsh, M.D., and radiation oncologist Phuoc Tran, M.D., may shed some light here.  The Hopkins scientists studied 274 men over age 75 who underwent radiation therapy for prostate cancer. “We found that men who underwent PSA testing (as in, men who got regular screening for prostate cancer) 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.  They also found that “many of these men (who had not been screened, or who had gotten incomplete screening) who had a low PSA were found to have cancers that could be felt on a rectal exam” — indicating, Walsh says, that “older men need both a PSA and a digital rectal examination.”  Although this was a small study and more research is needed, “we believe that PSA screening should be considered in very healthy older men.”  

So:  Are you otherwise very healthy, and could expect to live a good, long life? It’s probably a good idea to keep getting checked for prostate cancer.

What’s the difference in the men who had been getting regular screening?  Their cancer was most likely caught much sooner after their PSA started to go up.

Screening saves lives.  Here’s an example from another specialty:  My husband, Mark, is a gastroenterologist, and he knows, when he does a routine colonoscopy on someone – let’s say a 65-year-old man – who got a screening colonoscopy at age 50 (or 40 or younger, if that person is high-risk), and who had a follow-up colonoscopy when recommended, that he is much less likely to find bad cancer in that guy.  But say a man of that same age comes in for the first time to get a colonoscopy, maybe because of some blood in the stool.  Say that guy’s mother had colon cancer.  That man should have gotten checked out for the first time 25 years ago.  I’m not sure what his record is, but over the years, Mark has had to remove an awful lot of polyps – once, I remember, it was 40! – from people who didn’t get screened when they could have.  Worse, he has found cancer that has gone through the wall of the colon, cancer that needs surgery to remove part of the intestine, cancer that needs chemo, cancer that very likely would never have had the chance to develop if caught early.

Don’t be that guy.  Please.

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

 

 

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PSA Velocity:  It’s Not the Number, but What It Does!

Why did I say that no PSA number above 1, by itself, is a guarantee that you don’t have cancer?  Why do we say this in our book?

Because that’s what H. Ballentine (Bal) Carter, M.D., the great Johns Hopkins urologist and scientist, discovered.  In fact, he says:  “There is no PSA value below which you can guarantee someone they don’t have prostate cancer,” and no value that automatically means it’s cancer.  “There are men with PSAs of 20 who don’t have prostate cancer, and men with 0.5 to 1 who can have very serious prostate cancer.”

So, basically:  Your PSA number, by itself, means Jack.  What happens to it over time means everything.

This is called PSA velocity.  It is a concept pioneered in the 1990s by Carter, working with Patrick Walsh, M.D., my co-author on many books and publications, and it’s a very effective way to detect prostate cancer.  I recently interviewed Carter, who retired this summer after 32 years at The Brady Urological Institute at Johns Hopkins, for Discovery, a magazine published by the Brady.  He devoted his career to making sense of PSA, and what he has accomplished is incredible.  Among many findings, Carter also came up with median PSA numbers based on age, which we will discuss in a minute.

It’s a shame that many doctors, including even some urologists, don’t seem to grasp these simple and very effective ideas, and instead focus on the PSA number itself – an idea that was outdated 20 years ago.

I say this because I don’t know how many times I have talked to men who say:

“My doctor says I don’t need to worry about screening for prostate cancer until I’m in my 50s, and even then, it’s not really that big a deal.”

And, “My doctor says my PSA number is low, so everything’s fine, I don’t need to worry about it.”

This makes me very frustrated.  I’ve written about the travesty that happened in prostate cancer screening here, so we won’t go into that now.

Let’s get back to Bal Carter and PSA, and let’s time-travel, very briefly, to the late 1980s, when widespread screening for prostate cancer did not exist.  The discovery of PSA (prostate-specific antigen, an enzyme made by the prostate) had just made it possible, for the first time, to learn about prostate cancer from a blood test – but nobody knew what to do with PSA, or how to use it along with the rectal exam and the new use of transrectal ultrasound-guided biopsy in diagnosing prostate cancer early.

“There was controversy about even using PSA,” Carter recalls.   “There were voices saying, ‘Beware, we’re going to uncover a lot of cancers that never should have come to light.’”  And that was true.  So then came controversy over the PSA threshold:  what was the magic number that would indicate the need for a prostate biopsy?  “In retrospect, that was probably the wrong thing to be asking,” Carter says.  “There was just not a good understanding then of PSA as a continuum.”

Carter pioneered the concept of PSA velocity – the rate at which PSA rises over time.  “But that’s never been tested as a screening tool.  I honestly believe if we had not focused on a single, absolute threshold, and instead had focused on changes in PSA to alert us that someone has an aggressive cancer, in the long run we may have identified more individuals with the cancers that need to be treated, and eliminated more who don’t need to be treated.  But that will require a carefully done, prospective trial.”

Carter started looking at this years ago, in studies that would lay the foundation for PSA screening and also for safe, vigilant active surveillance as a mainstream treatment for low-risk prostate cancer.  How that came about, he says, “was really the brilliance of Pat Walsh.  When I first joined the faculty, he came to me and said, ‘What do you think would happen if we looked at changes in PSA?’  I said, ‘I think they’ll probably rise faster in people who have prostate cancer.  How can we study that?’  And he said, ‘Have you ever heard of the Baltimore Longitudinal Study of Aging (BLSA)?’”  The BLSA was conceived in 1958, when gerontologists at the Baltimore City Hospitals were trying to find a better way to study aging.  At that time, and even today, scientists would compare men and women who were in their twenties to people who were decades older.  But these scientists had a better idea:  to revisit the same person every two years, with a history and physical and blood samples that were stored.  This made it possible to look at men who had prostate disease, benign enlargement, or localized or metastatic prostate cancer – and then work backward, describing the changes in PSA, over the previous 20 to 30 years.

“I had never heard of it,” Carter continues.  “He said, ‘I know they have a large frozen serum bank, and we might be able to use some of that to look at the question: do PSA levels rise faster in men who have aggressive disease vs. men who don’t have prostate cancer?’  Sure enough, that’s the way it turned out.”

Carter’s work, Walsh says, “has changed the way prostate cancer is treated today around the world.”  Although Carter is a fine surgeon, “he has done his best not to operate on men who don’t need it.  He was a voice of reason at a time when the diagnosis and treatment of the disease underwent revolutionary changes.  With the introduction of widespread PSA testing in 1990, the diagnosis of prostate cancer reached epidemic acceleration and led to abuses fed by the greed of many fellow urologists.  Those are tough words, but there is no other way to explain it.  Bal emphasized the harm of overdiagnosis and overtreatment, proposed solutions based on improved screening practices, and developed guidelines for identifying men who should not be treated.  He began by learning about PSA.”

Using blood samples that had been collected for decades by the BLSA, Carter described how age and prostate disease influenced PSA.  “Based on his unique observations, he proposed new ways to interpret PSA levels, and specified intervals for testing that were the most informative,” says Walsh.  As Chairman of the AUA’s Guidelines Panel, Carter developed recommendations for how all urologists should screen for prostate cancer.

A Prostate Barometer

We discuss PSA in detail in chapter 4 of our book, but briefly:  PSA should never be considered a one-shot, cut-and-dried reading.  Instead, it’s like having a prostate barometer, so your doctor doesn’t have to wait for the PSA level to reach a magic number before acting.  With PSA velocity, what matters is a significant change over time, and for this to be accurate, you need to have multiple PSA measurements taken in the same laboratory, because PSA measurements can vary slightly from lab to lab.

The level of change depends on your PSA number.  For men with a PSA greater than 4, an average, consistent increase of more than 0.75 ng/ml over the course of three tests is considered significant.  Let’s say that over 18 months, your PSA went up from 4.0 to 4.6 to 5.8.  Clearly, something’s going on here.

But what if your PSA is less than 4?  Walsh says:  “Because we now realize that men with PSA levels as low as 1.0 may have cancer,” guidelines have been established for PSA velocity in these men, too:  In these men, work by Carter and colleagues suggests, any consistent increase in PSA is alarming, even an increase as small as 0.35 ng/m. a year.  They also found that many years before a man’s prostate cancer was diagnosed, when his total PSA levels (as opposed to more complex PSA readings, such as a free PSA test) were still low, a PSA velocity of greater than 0.35 ng/ml a year predicted who would later die from prostate cancer.  If you have a PSA between 1 and 4 and it is consistently rising faster than about 0.4 ng/ml a year, you should get a biopsy.

What Should My PSA Be for My Age?

Be aware:  15 percent of men with a PSA level lower than 4 have prostate cancer, and 15 percent of these men with cancer have high-grade cancer, the aggressive kind that needs to be treated.  That’s why we say in the book:  “There is no safe, absolute cutoff above a PSA level of 1.0 at which a man can rest assured that he is not at risk of harboring a high-grade cancer.  Thus, what probably is going to matter the most in the future is your PSA history.”  Get that baseline PSA level in your early 40s, or at age 40 if you have a family history of prostate cancer, of cancer in general, or if you are African American.

Then, depending on the baseline level – whether you are above or below the 50th percentile for your age – take a repeat PSA test every two to five years.  If you are in your 40s and your PSA level is greater than 0.6 ng/ml, or if you are in your 50s and your PSA is greater than 0.7, you should have your PSA measured at least every two years.  If your PSA is below this percentile, you may be able to wait as long as five years for the next test.  These are Carter’s numbers.  In another study, of a larger group of men, urologists Stacy Loeb of New York University and William Catalona of Northwestern University found the comparable numbers to be 0.7 for men in their 40s and 0.9 for men in their 50s.  

So, if you’re 50 and you have a PSA of 2.5, for example, and your doctor says it’s low, that doctor is wrong.  It’s actually high for 50.  It could be prostatitis, or benign prostatic enlargement (BPH).  But it could also be cancer, and you need to get it checked out.  A good next step would be to check the free PSA, with a test such as the Prostate Health Index (PSA has various forms in the blood, and these “second-tier” PSA tests can help tell whether it’s more likely to be higher because of BPH or cancer.)   The higher the free PSA, the higher the likelihood that you are free of cancer, as Carter says.  The numbers from studies vary, but one free PSA cutoff is 25 percent.  If your free PSA is higher than that, your PSA is more likely to be elevated because of BPH than it is of cancer.  If your free PSA is lower than 25, you are more likely to have cancer.

So, basically, to sum up:  You can’t just look at a PSA number and know very much at all.  It’s like looking at a Most Wanted photo and saying, “That guy looks guilty,” or “He has kind eyes!  He’s probably been framed! He’s no criminal.”  No self-respecting detective would ever try to get a warrant based on appearance.  You investigate first.  This is why you study PSA, watch what it does, and if it’s going up, check the free PSA, with a “second-tier” PSA test such as the Prostate Health Index (PHI); you also may need a biopsy.  Don’t just give it a free pass after one test because “the number’s low.”

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

 

 

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Close to Home.  Again.

Why do I write so much about prostate cancer?  Because I can’t get away from it.  And now prostate cancer, never very far away, has hit close to home.  Again.

Before I tell you my story, please study this picture.  This is a picture of a miracle.  It’s not a pincushion.  It’s an MRI of a prostate, and the needle biopsy that used this MRI image to find its target – the spot of cancer in what’s ordinarily the most difficult-to-reach, out-of-the-way spot possible.  Those green needles aren’t all in there at the same time; this just shows where the needles went.  Two of them went directly into that spot of cancer.  Believe me when I tell you – as four of the most respected urologists in the U.S. have told me – this cancer would have been missed with the traditional transrectal biopsy, which uses ultrasound.  More about this in a minute.  The cancer is aggressive – Gleason 9.  But it is very small.  It is curable, the urologists all believe.  I believe it, too.

That’s my husband’s prostate.  At this very moment, we are scheduling surgery to get it taken out.

I feel like I’ve been in training for this moment for 28 years. 

That’s when prostate cancer made its first unwelcome entrance into my life – when my father-in-law, Tom, died of it at age 53.  My husband, Mark, was a medical Chief Resident at Johns Hopkins at the time, and all he could do for his dad was make sure his terrible pain was controlled.  Tom never had a chance; he had gone to see the doctor for back pain.  That turned out to be prostate cancer, which had already invaded his spine.  Tom never had a PSA screening test; nobody did back then.  That would change in a couple of years.

I worked at Hopkins, too, as the editor of the medical alumni magazine.   When Tom had been diagnosed, his doctor told him, “Don’t worry about it.  Prostate cancer is an old man’s disease – the kind you can live with for years.”  Tom died within months of his diagnosis.  I wanted to know how a 53-year-old man could die of an old man’s disease, so I decided to do a story about prostate cancer.  I set up an interview with Patrick Walsh, the head of urology at Hopkins, and we wrote a story that would change my life forever.  That sounds kind of melodramatic, but it’s true.  I have been writing about prostate cancer ever since.

Back then, I had no idea that Pat Walsh was the surgeon who invented the nerve-sparing radical prostatectomy, and that he had developed the best prostate cancer research and treatment program in the world at that time.  I wrote about Tom’s battle with cancer, and Walsh’s operation, and the research that was happening at Hopkins.  In those pre-internet days, we were inundated with requests for reprints.  Some 3,000 reprints later, we decided to write our first book.

That book was called, The Prostate: A Guide for Men and the Women Who Love Them.  We wrote it for women as well as men, because in Walsh’s experience, it was the women who got their men – fathers, husbands, brothers, sons – to the doctor.   I found this to be true:  as we were writing it, in 1992, I told both my parents that my dad should go to the doctor and get his prostate checked, and he should get this new thing called a PSA blood test.  My mom made him go and keep going every year.  He hated it, especially the rectal exam, but he went.

In 1997, when Dad was 63, his doctor felt something suspicious on his prostate – a rough patch.  “Probably prostatic calculi” (the prostate’s version of tiny gallstones), he said, but he ordered a biopsy, done by Dad’s local urologist in South Carolina.  A pathologist found prostate cancer.  My parents called me.  I called Pat Walsh about 30 seconds later.  We sent the slides to Hopkins for a second opinion, and they were read by a world-renowned urologic pathologist, Jonathan Epstein.   Two months later, Pat Walsh took out my dad’s prostate, and saved his life.  Dad had initially been diagnosed with Gleason 6 (3 + 3) disease, but – like many men – he actually turned out to have some slightly higher-grade cancer, and his pathologic stage was Gleason 3 + 4.

Note:  My dad never read my book.  My mom did, and on the eight-hour drive up I-95 to Baltimore for the surgery, she read aloud passages of the book she had highlighted.

A few years later, Mark’s grandfather, Charles, died at age 85 of complications from radiation therapy for – you guessed it, prostate cancer.  Radiation was not nearly as precise back then as it is now, and there were a lot of complications, particularly in the rectum.  Frankly, I don’t think he even needed to be treated; at his age, with heart problems, he could have done watchful waiting – the precursor to active surveillance back in the day.

A few months after that, my beloved grandfather, whom we all called Pop, died.  Of a heart attack after being put on a great big dose of estrogen – another treatment they didn’t have the hang of back then – for prostate cancer.  Like Mark’s grandfather, Pop was in his eighties, had no symptoms, and probably didn’t even need to be treated.  We know so much more now.

Patrick Walsh and I kept writing books on prostate cancer, and our first book morphed into a more cancer-focused book, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.  Over the years, the news got better and better – particularly the chapters on advanced and metastatic prostate cancer.  When we first started, the news there was bleak.  Now, in large part due to research funded by the Prostate Cancer Foundation (PCF), for which I am proud to work as a science writer, there is more hope for treating advanced prostate cancer than ever before.  But, as my dad’s case has shown, there’s a lot to be said for early diagnosis and treatment.  Ideally, Walsh and I wrote, prostate cancer will be a blip on the radar screen – it’s caught early, it’s treated, and then it’s gone, and you get on with your life.  Many men with low-grade disease may never need treatment; they can be safely monitored for years.

When Mark reached age 40, I made sure he got his PSA tested every year.  His PSA was very low (less than 1, and then right around 1) when he was in his forties and early fifties.  Because of his family history, I told him and his doctor about getting a genetic test (which I have written about) to screen for 16 mutated genes known to be linked to aggressive cancer.  Mark took the test, and thank God, it was negative.  His PSA went up to 2, so his doctor ordered another test three months later.  It was 3.  We took another test; also 3.  I had suggested to Mark and his doctor that he get the prostate health index (PHI) test, which looks at different types of PSA.  Mark’s free PSA had dropped from 25 down to 18 – not encouraging.  As we said in our book:  free PSA of 25 and above is more likely to be free of cancer.

I called Pat Walsh.  He told Mark to come to Hopkins.

We live in a small town in Arizona.  Our internist said, “at least get the biopsy done here.”

I said these words:  “Absolutely not.  You need an MRI.”

I knew this for several reasons:  I had written about it from interviews with respected urologists including Bal Carter, of Hopkins; Stacy Loeb, of New York University; and Edward (Ted) Schaeffer, of Northwestern.  And I had interviewed Rob Gray – a young guy with a young family, whose battle-scarred prostate had endured multiple ultrasound-guided biopsies, all negative, but whose PSA had continued to go up.  His doctors told him not to worry about it; Rob worried.  He would still be worrying today, except he had a fusion MRI, which combines several different ways of looking at the prostate.  Because of all his other biopsies, his prostate had developed scar tissue that masked the cancer.  The MRI found it.

That stayed with me.  Then, just weeks ago, I interviewed Hopkins urologist Michael Gorin about two things in particular.  One is multi-parametric (mp) MRI, which is similar to fusion MRI, but it’s what they call it at Hopkins.  Gorin has developed software that allows him to take the findings of mpMRI and use them as a road map to guide the biopsy.

The other thing Gorin is doing is getting to the prostate by a different approach: through the perineum.   The perineum is the area between the scrotum and the rectum.

The traditional transrectal ultrasound (TRUS) biopsy, as its name suggests, reaches the prostate through the rectum.  There are a lot of problems with the TRUS biopsy.  Because it goes through the rectum, there is a risk of infection.  There is no risk of infection from the perineum; in fact, they don’t even give antibiotics for this approach.  And, most worrisome about the transrectal approach:  it’s hard to cover the entire prostate.  This is a problem especially for African American men, who tend to develop prostate cancer in the anterior region of the prostate.  Basically, as Ted Schaeffer, an excellent surgeon and coauthor of the book, explained, 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, Mike 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.

Now, combine this approach with MRI, and it’s a whole new world for diagnosis.

Compared to MRI, TRUS is blind.  It’s lame.  There, I said it.  Imagine you’re playing paintball at night, and you’re trying to hit a target.  You do the best you can, but you miss a lot.   Then the other team comes in and cleans your clock – because these guys have night-vision goggles.  They can actually see what they’re trying to hit.   MRI gives the urologist night-vision goggles.

When Mark got his MRI, it showed a 6 mm lesion – a spot the size of a smallish pearl on a necklace.  There was a 70-percent chance that this would be cancer.  Gorin took that MRI and used it to guide the biopsy.  Out of 15 cores taken throughout the prostate, he took two samples from inside this spot; he had a target to hit, and he nailed it.  He is my hero.

I’m telling you this because I have learned some things that I want you to know.  In fact, like the Ancient Mariner in the very old poem by Samuel Coleridge, I feel compelled to tell you this, and I hope you will feel bound to listen.  And I hope to God that someone else will be helped by what I’ve learned, including:

Every patient needs a treatment warrior.  An advocate.  Mark is an incredibly smart doctor, but he was just as stunned at having a possible diagnosis of cancer as any other patient.  His internist wanted him to go to the local urologist for a biopsy.  Our small town is not up on all the latest technology.  We don’t have an MRI for prostate biopsies.  They don’t do the transperineal approach. Again, I am certain that if Mark had gotten the traditional TRUS biopsy, this would not have been found.  The lesion on his prostate was in the anterior region – hard to reach, especially if the doctor can’t see and doesn’t have an MRI-revealed target to try to hit.  But Mark would have done as his doctor suggested, because he was stunned and he didn’t know as much as I happen to know about prostate biopsies, because his area of expertise is digestive diseases, not prostate cancer.

The difference between ultrasound and MRI is night and day.  It’s life-changing, and life-saving.

There is no safe PSA number above 1, as Bal Carter has said for years, and as we say in Chapter 4 of our book.  My dad’s PSA was very low:  only 1.2.  And yet, he had Gleason 3 + 4 disease.  Mark’s PSA is only 3.  Please understand this point.  This may be the most important of all.  I have talked to so many men over the last nearly three decades.  So many men who were wrongly assured by their doctor – because their doctors did not know better– that “Your PSA is going up, but it’s still pretty low.  Don’t worry about it.”  If your PSA is going up, worry about it.  It may not be cancer, but you have to check.  If your doctor sees one PSA reading and judges the number by itself, that doctor is not giving you the best advice. 

            You must look at PSA velocity:  the rate of rise of PSA over time.  I will be covering this in more detail in the next post.

And finally – again, because I have written about this disease for nearly 30 years, and talked to so many men with every stage of prostate cancer – the doctors who urge men not to get tested, who tell them not to worry about it, who say there’s no benefit to getting screened for prostate cancer, that the risk of complications from biopsy are too great, that too many men are overtreated, are just plain wrong.

As urologist Stacy Loeb told me:  “A diagnosis of prostate cancer doesn’t mean you need to get treated.”  But you should be the one to make that decision; don’t let cancer make it for you.  Not all men need treatment.  Because of Mark’s family history and his Gleason score, even though the one spot of cancer is very small, we will be getting treatment.  Surgery.  I say we, because it’s both of us.  We’re a team.

Mark is worried about the main complications of surgery – temporary urinary incontinence and the risk of erectile dysfunction (ED).  Of course he is; nobody wants these complications.

I’m not.  There is a huge difference between dealing with the side effects of treatment for localized disease – cancer that is confined within the prostate, cancer that can be cured with surgery or radiation – and the side effects of treatment for advanced disease, treatment that begins with shutting down the male hormones.

The complications from surgery can be treated, and as Pat Walsh says, “Where there’s a will, there’s a way.”

“But what about incontinence?”  I don’t care.  I know that it’s almost always temporary, and if not, biofeedback is wonderful, and he can start doing the Kegel exercises now.  Absolute worst-case scenario, there’s surgery to get an artificial urinary sphincter.  We’ll deal with it.   It will be okay.

“But what about ED?”  I don’t care.  We’ll deal with it.  There are many treatments, starting with drugs.  Worst-case scenario, there’s surgery:  a prosthesic implant.  I don’t think this will happen; the cancer is nowhere near the neurovascular bundles, the nerves responsible for erection (discovered by Pat Walsh, who developed the “nerve-sparing” radical prostatectomy).  I think he will be just fine.

What matters is him being there for me, our son in high school, our son who just graduated college, and our daughter and son-in-law, who are about to have their first baby.  That’s all I care about.  Mark not being there is unthinkable.  Right now, the score in our family is prostate cancer 3 (Tom, Charles, and Pop), our family (my dad, who is about to celebrate his 84th birthday) 1.

I don’t want prostate cancer to win against our family ever again. 

When Pat Walsh called with the biopsy report, it took a second to shift from “Oh, my God,” to “Let’s roll.”  We had been praying for low-grade cancer, Gleason 3 + 3, but this high-grade; it is aggressive.  So we are now dealing with high-risk cancer.  But it is small-volume, thank God!  Because it was detected early.

“Thank God,” Walsh agreed.  “We could not have found it any earlier,” and without MRI, it wouldn’t have been found at all.  “These are the lesions we consistently missed” with TRUS biopsy.  He explained that where Mark’s tumor is, in the posterior apex of the prostate, is like the nose cone of an airplane.  It’s behind the urethra; almost impossible to reach through the rectum – but Gorin reached it through the perineum.  One more thing, Walsh said:  “It was found with a new machine that Mike Gorin has had only for a week.  This was truly a targeted MRI.”  Thank God!  Now let’s roll.

Note: This MRI is shown with Mark’s permission.  He, too, has made it his mission to help men get screened for prostate cancer, and if they have a rising PSA, to get it checked out.

Update: Apparently, the strength of the magnet in the MRI matters a lot.  The stronger the magnet, the stronger the image.  The prostate MRI magnet used for Mark is 3 Tesla.

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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