When it comes to disrupting your life, prostate cancer cuts quite the swath.   We don’t know exactly how big this trail of disruption is.  We don’t know how bad it is, either.

Let’s start with the numbers.  In the U.S. alone, there are more than 3 million men out there who are prostate cancer survivors.  Although we can speculate, we don’t know exactly what these guys are going through; everybody’s experience is different.  It doesn’t help, either, that many men are reluctant to discuss the side effects of treatment.

But these men are just the tip of the iceberg.  An estimated 73 percent of men aged 65 to 80 are married or have partners, says New York University urologist Stacy Loeb, M.D.  “It’s safe to say that if there are more than 3 million prostate cancer survivors and approximately three-fourths of them are partnered, that’s a lot of people who are being affected by this disease.”

And hardly anybody knows what these wives and partners are experiencing; in part, because hardly anybody has asked them.  Loeb and colleagues are hoping to shine some light on these other survivors.  Loeb was first author of a study recently published in the Journal of Sexual Medicine, called, “A Call to Arms: Increasing our Understanding of the Impact of Prostate Cancer on the Sexual Health of Partners.”  I recently interviewed her for the Prostate Cancer Foundation’s website.

Loeb and colleagues found that sexual disruption for these couples often starts with biopsy!  “One of the potential effects of sampling the prostate with needles is blood in the semen, which can be off-putting to both patients and their partners.  It usually doesn’t last more than a few weeks, and it’s not medically dangerous. “However, seeing blood can certainly be disruptive of the sexual encounter – so even from the process of diagnosing prostate cancer, there can be an impact on sexual health for the couple.  There is controversy over whether biopsies – or repeated biopsies – are associated with erectile dysfunction (ED).”  Some evidence suggests that undergoing multiple biopsies can cause scar tissue to develop in the nerves responsible for erection, but the medical literature is “a bit conflicting, Loeb says.  It’s also difficult to study, because many men getting multiple prostate biopsies are also getting older, and have other health conditions that can affect sexual health.

And that’s just diagnosis of prostate cancer.  “All forms of prostate cancer treatment can have a potential impact on sexual health,” says Loeb.   For example:  “With surgery, the greatest insult to the body is at the beginning, and then function can gradually recover over time.  With radiation, ED can take several years to develop.”  But what about the men – and there are thousands each year – whose cancer requires more than one form of treatment?

“Surveys from both the U.S. and the UK show that many men who undergo various forms of prostate cancer treatment have sexual complaints,” says Loeb.  “However, many of them are not getting any treatment for their ED or other issues.  This really has a huge impact for the partner.  ED is one of many possible sexual consequences.  Penile curvature (Peyronie’s disease) is another.  There’s the potential for penile shortening (note: use of a vacuum erection device to stretch the penis can help prevent this) and there are issues with libido.” Men who have had prostatectomy may also struggle with urinary incontinence, and some may experience sexual incontinence (leaking urine during sex).  “There are changes in orgasm after prostate cancer treatment, as well,” Loeb adds.

Men who undergo short- or long-term androgen deprivation therapy (ADT) experience a loss of libido and complications including gynecomastia (breast swelling; this can be treated with radiation).  Does this affect their partners?  Of course!  But by how much, nobody knows.  The doctor visits are typically “focused on the patient,” says Loeb.  “There’s a significant unmet need for greater support for partners.”

Many prostate cancer treatment centers offer their patients help with penile rehabilitation for recovery of sexual function.  “In some practices, there is a different urologist, nurse practitioner, or physician assistant who manages sexual health issues than the urologist who did the surgery, whose main expertise is in cancer control.”  The good news is that sexual medicine subspecialists can provide a lot of help.  The not-so-good news is that many men don’t take advantage of what these experts can offer.  There’s still a lot of stigma.  In the study, Loeb and colleagues found that a significant number of patients were not seeking help with sexual recovery.  Shame or unwillingness to discuss sexual issues may account for some of the reluctance; another barrier may be financial.  “Some of the treatments are very expensive.”  For example, erection-assisting drugs can be expensive, and many insurance plans don’t offer reimbursement for a VED (although the Veterans Administration does cover VEDs).

The other not-so-good news is that “there’s a lot of work to be done with the partners, defining their experience and the unmet needs that they have, and finding ways to provide additional support to them.”

In one way, these survivorship issues are a good sign – they’re happening because more men with localized disease are being cured of prostate cancer, and more men with cancer that has escaped the prostate are living for many years, says Loeb.  “But what comes with that is having a large pool of survivors who are living for years with the impact of the disease.  This impact does not only affect the patients, but also the people around them.”  In the study, some of the partners described “problems with relationship dynamics,” arguments or the opposite: isolation.  “They feel they can’t discuss it with their partner.”  Some describe making changes, like using a certain type of condom to deal with sexual incontinence.  “In some cases, there’s a real feeling of grief; people feel cut off from their partner, and they can’t discuss some of the sexual issues easily. There really is a great need for more research in this area, and help for the partners of prostate cancer patients.” Many of the partners, by the way, may be having sexual health issues of their own, including going through menopause.

So:  Men, be kind to your partners.  They’ve been through a lot with you.  Even though it’s not in their bodies, it’s their cancer, too.  

All of this said, I just want to add a personal note:  As the wife of a prostate cancer survivor, I‘m just so happy, and so very grateful, that the cancer is gone!  This doesn’t mean the recovery hasn’t been a drag; it has.  But that weight of fear that felt so crippling, for me at least, was much worse.  

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

 

 

So, you’ve got localized prostate cancer, you’ve decided to get it treated with either surgery or radiation, and you have steeled yourself to just bite the bullet and get on with it.

You’ve been through a lot already: the PSA and physical exam, the biopsy, and just coming to terms with the fact that you have prostate cancer.   You did your research, decided on the right treatment, found a good doctor, and you’re all ready to go – and, looking past the treatment and recovery, you’re looking forward to getting on with the rest of your life.

And now there’s a global pandemic.  OMG! 

At many hospitals around the country, non-emergency procedures have been bumped, including treatment for localized prostate cancer.  And maybe you’re feeling a little stressed by this, or even flat-out panicky, thinking that cancer’s ticking away inside your body like a time bomb – or like the creature that burst out of John Hurt’s chest in “Alien.”  You’re not alone.  I recently wrote about this for the Prostate Cancer Foundation’s website, pcf.org., because so many men are worried about treatment delays.

Hold up there, friend:  a few weeks is not going to mean that your golden opportunity for a cure has closed.  Let’s take a deep breath and think about this:

First, nobody, ever, has instant treatment for localized prostate cancer.   The reason is that your prostate must heal after the supreme insult of having multiple needles stuck in there and little bits of tissue removed.  After the biopsy, the prostate is riddled with tiny holes – like perforated paper.  And, like perforated paper, it’s easier to tear, which means it will be more difficult to remove that damaged tissue in surgery.  Also, it’s inflamed; it’s not going to respond the same way to radiation, and it’s going to be a lot more difficult for a surgeon to operate.  If there’s swelling, or if the tissue inside the prostate is adherent to the rectum – a common, temporary occurrence after biopsy – the surgeon may inadvertently leave cancer cells behind.   The inflammation needs to heal and the punctures need to heal.   That’s why you have to wait a minimum of six to eight weeks after biopsy before you can get surgery or radiation.

“We have studied hundreds of patients who underwent surgery and evaluated the delay between diagnosis and cure,” says my longtime coauthor, Johns Hopkins urologist Patrick Walsh, M.D.  “With long follow-up, we found no significant difference in the 10-year cancer control rates of these men.”  This is reassuring: “There is no immediate urgency to perform surgery after you are diagnosed with prostate cancer, especially if you have stage T1c disease and a biopsy Gleason score lower than 7.”

Second:  every single statistic about men being cured of prostate cancer you’ve ever seen:  those men all had to wait a few weeks or months, and they did great!  Many of those men got repeat biopsies.  They got second opinions.  They took their sweet time just wrapping their minds around the fact that they had cancer.  They still had their cancer cured.  If you were diagnosed by a change in PSA, here’s more good news:  PSA screening has given us a five- to ten-year lead time in diagnosis.  It used to be that prostate cancer wasn’t diagnosed until it had grown big enough to be felt in an exam, or until it caused symptoms.  You’re already ahead of the game!

Third, the average prostate tumor at diagnosis has been growing for years.  Prostate cancer tends to grow very slowly within the prostate.  It has a slow doubling time.  So, even if it’s an aggressive cancer that needs to be treated, just remember:  that sucker has been in percolating away in there for a long time.  It’s not going to suddenly take off and sprint out of the prostate in the next few weeks.  You are going to get it treated; it’s just not exactly when you planned.

Two more things to consider:  Stress is bad for the prostate.  Worrying about not getting your treatment right away is not good for you.  And finally, you may want to take advantage of this brief delay to lose a few pounds.  The prostate is not terribly accessible in the best of situations, because of its location deep in the pelvis.  If you have a lot of belly fat, it can make it more difficult for a surgeon to perform a good cancer operation, preserve urinary control, and preserve potency.  “The best advice I can give an overweight man seeking radical prostatectomy is to lose weight through a healthy program of diet and exercise,” says Edward Schaeffer, M.D., Ph.D., contributor to our book and director of urology at Northwestern University.  “For those who are severely overweight, robotic surgery is extremely challenging and should be performed only by experienced surgeons.  In men who are very overweight or morbidly obese, it can be very difficult for the anesthesiologist to ventilate the lungs because of the weight of the abdomen pressing on the diaphragm.”  If this applies to you, your best bet – besides having an experienced surgeon – is to take this time to change your diet and get some exercise.

And don’t despair!

 

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

 

Here we are in a global pandemic; we’re all stressed, and we all need to fight it.  If you have prostate cancer, you need to fight it even harder, because the stress hormone, cortisol, may be affecting your cancer, AND because lowering your stress may help your cancer respond better to treatment.  

Having prostate cancer is stressful, even today, when there is more hope of successful treatment than ever before.  But it’s not just the cancer itself.  It’s the hassle of wrangling with an insurance company, and the worry about medical bills or taking time off for treatment; it’s frustration over a slower-than-expected recovery of urinary continence or sexual potency.  It’s anxiety about the next PSA test.  It’s unanswered questions and uncertainty, and worry that life will never get back to normal.  Yes, there’s stress, and plenty of it.    

Does stress make prostate cancer worse?  This one’s not so easy to answer.  “Everybody has an individual response to stress,” says medical oncologist Suzanne Conzen, M.D., Chief of Hematology and Oncology at the University of Texas Southwestern Medical Center in Dallas.  And that’s the key, she adds:  it’s not so much the stress itself but the physiological response that can take a toll, and that may hinder our ability to fight cancer.  Conzen is studying stress pathways in cancers, including prostate cancer.  I recently interviewed her for the Prostate Cancer Foundation (PCF), which is funding some of this research.

The body responds to stress with a surge of corticosteroids; primarily cortisol.  When our ancient ancestors were running for their lives from a savage beast, it was this stress hormone, cortisol – along with adrenaline – that kicked in and saved their bacon.  “We are hard-wired to respond to stress with this ‘fight or flight’ response.”  Unfortunately, many of us react to everyday troubles with the same surge of stress hormone as if we were facing a sabertooth tiger – as if we were under attack.  Our hypothalamus, located in the most primitive part of the brain, tells our adrenal glands, “This is the big one! Go to Defcon 3.”  And cortisol, revving up in its effort to save us – a chemical version of someone running around in a panic, shouting, “Ohmygod, ohmygod,” can cause harm instead, affecting normal functions including the immune system, and even changing genes that are expressed in cancer cells.

“Some people have a higher stress response than others.  It could be an inherited tendency; or they haven’t necessarily developed effective ways of coping with exposure to stressors,” says Conzen.  “However, not all people who have a high stress response get cancer; and a lot of people are under stress and don’t get cancer.  But that’s the complexity: not everybody who smokes gets lung cancer, but smoking is a risk factor.  What you want to do is reduce your risk factors,” and your response to stress – like a bad diet, or smoking, or being overweight – is a risk factor for prostate cancer that can be changed.

“We think high cortisol levels are probably not a good thing in men who have prostate cancer.  At least a subset of those men may have tumors that respond to high levels of stress because the prostate cancer expresses a protein, the glucocorticoid receptor (GR), that is activated by cortisol,” and although Conzen is working on how to determine who these men are, right now, there’s no way to know for sure.

Cortisol, a hormone, attaches to a protein called the glucocorticoid receptor (GR) in cells throughout your body, and this is like flipping a switch that activates stress in all those cells, including cancer cells.  In ovarian cancer, Conzen has shown, higher levels of these receptors in the tumor tissue are linked to more aggressive, even lethal, disease.  And in prostate cancer, she has found that the GR “is more highly expressed in cancer that is resistant to androgen deprivation therapy (ADT).”

But it’s complicated, she adds:  “We think it’s not only how much GR your tumor has, it’s how active it is.”  With PCF funding, Conzen and colleagues in her lab are working to find a way to measure how active cortisol and GR are in a prostate tumor, “whether it’s turning on and off a lot of genes, or just a few genes.  The amount of GR does not necessarily correlate with the activity of the protein.”

So, how to fix it – if a man has aggressive prostate cancer, and high cortisol/glucocorticoid receptor activity?  “One hypothesis would be, deprive that tumor of your body’s stress hormone receptor activity, by keeping the stress hormones relatively low.”  This could happen with some type of medication – or, it could happen with stress reduction.  What is that, exactly?  It could mean making changes in your life, so there are fewer stressful factors in it.   It also could mean making changes in you – with the help of such things as exercise, yoga, meditation, and counseling, and other things to help reduce stress, like having a pet, and reaching out to family, friends or a support group, so you’re not coping with this alone.

Note:  Conzen does not believe that stress, all by itself, causes prostate cancer.  “My guess is that GR-mediated stress signaling in the tumor cells probably has more to do with promoting aggressiveness and progression of cancer,” and perhaps recurrence of cancer.   When Conzen talks about stress, she doesn’t mean a single traumatic incident, such as a car crash:  “The kind of stress we’re talking about is daily unremitting stress.”  Those countless little things that add up, day after day.

Also with PCF funding, Conzen and colleagues are working to identify which genes in prostate cancer cells are involved with the stress response, and what those genes are doing when the tumor cell GR is activated in a man who already has prostate cancer.  “If we knew that, we would know when it would be useful to give a drug (a GR-modulator) to block it,” especially if they could find a drug that would only work in prostate cancer cells.  Glucocorticoid receptors are expressed in a subset (about 20 percent) of castration-resistant prostate cancer.  Conzen and colleagues have initiated clinical trials testing GR-modulating drugs in breast cancer, prostate cancer, and other cancers. In advanced prostate cancer, there are at least three ongoing clinical trials testing GR-modulators: 1) enzalutamide alone vs. with the GR-modulator mifepristone; 2) the GR-modulator CORT125134 plus enzalutamide; and 3) the GR-modulator CORT125181 plus enzalutamide.

In the meantime, stress reduction may help achieve similar results for men with prostate cancer, by lowering circulating cortisol activity.  Clinical trials are needed, Conzen notes, to show the effectiveness of stress response-reducing measures including cognitive behavioral therapy, medication, yoga, and mindfulness in prostate cancer patients.  Such trials have been done in breast cancer, she says, “and have shown that there is a beneficial effect.”

 

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

 

 

You’re minding your own business and happily living your life, as most of us are when there is a diagnosis of cancer.  What do you do now?

For Ric Siler, an actor and writer who was diagnosed with prostate cancer at age 64, the easy answer is that he went to Italy and wrote a one-act play that beautifully combines both of these life-changing journeys.  He has performed it in the New York area and a reading of it here.  His message is resiliency — a timely message for all of us, as I’m writing this during the global pandemic.

I was lucky enough to interview Ric for the Prostate Cancer Foundation’s website, pcf.org, and we have stayed in touch.  Ric did what many doctors believe is the most important thing you can do in a medical crisis:  he remained upbeat.  He practiced gratitude – for his wife and daughter, for a chance conversation that resulted in finding just the right surgeon, for the kindness and support of friends and the many medical professionals he would soon come to know, and especially for the beauty of nature and art, which he began noticing all the time.  He also kept his sense of humor.

Why does attitude matter?  Nobody understands the mind-body connection completely, but scientist Suzanne Conzen, M.D., has shown that stress involves the same pathways as cancer.  The stress hormone is cortisol, and just about every single cell in our bodies has a receptor for cortisol (this is called the glucocorticoid receptor, or GR).  There are many important implications to her work, but one of them is that decreasing stress lowers cortisol, and this can slow the growth of cancer.

Out of the blue:  When Ric’s prostate cancer was diagnosed, in June 2018, “I had no symptoms,” Ric says, “no idea that anything was wrong.  I had gone to my doctor for something completely unrelated, and he said, ‘We haven’t taken your blood for a while.  Maybe we should.’”  It turns out that in a year and a half, Ric’s PSA had doubled, from 4 to 8.

He went to a urologist near his home, in Rockland County, New York, and didn’t much care for him.  “He did nothing to instill confidence; I didn’t feel right about him.  There were four doctors at the practice, so I picked the one who was, available.  Funny how that works.”  The biopsy came back: cancer was present in all 12 tissue samples, and his Gleason score was initially thought to be 8; it later turned out to be 9.

Ric’s daughter, Laurette, suggested that he get a second opinion.  “I hadn’t even thought of that,” says Ric.  But he didn’t know what to do, or how to find a good urologist.  “The next morning, I was working out at the Y,” and without realizing it, he networked.  The PCF recommends both of these strategies.  It is very important to find a doctor in whose clinical abilities you feel confident.  And networking – to find the right doctor, or to talk to men who are or have been in your same boat – can make a huge difference in how you approach your cancer treatment and look forward to your life after cancer.

Ric talked to his friends, Peter and Steve.  Steve said he knew men who had survived prostate cancer, and offered to ask around for a good surgeon.  And “Peter said, ‘Talk to Jerry.’  Jerry is the founder and CEO of the company Peter and I work for, and is a prostate cancer survivor.”  Ric talked to Jerry that same day.  “I saw Jerry in his office with the door open.  I asked if he had a minute,” and explained the situation.  “It just came out in a flood.  I hadn’t planned to be emotional;” in fact, “a sort of stoic resolve is usually my default mode.”  But Jerry understood, and said had felt the same way with his own diagnosis of prostate cancer.  “He said, ‘When I heard the news, I thought my life was over.’  And then he said, ‘A year from now, we’ll be laughing about it.’  It was great to talk to someone who had been in my shoes and come out the other side.  He offered any help, any time I needed to talk, and said, ‘You’ll do the same for people someday.’  Yes, I will.”

The next day, Steve texted Ric with a referral from one of his buddies to urologist Ash Tewari, M.D., at Mount Sinai.  “Time for a second opinion!  I was reading Don Quixote at the time, and I saw this quote the same day, a Latin phrase that translates into, ‘After the darkness, I hope for light.’”

While he waited to see Tewari, Ric, who had started to keep a written record about his experience, made a note of how he was feeling:  “Keeping it as normal and real as possible.  Not dwelling on it.  Staying positive, or trying my best to.  I never completely lose sight of what’s happening, but I am not letting it get me down.”

The date for the operation was September 17.  “I asked about the hospital stay, and he said that he did three surgeries yesterday, and they were all going home today!”  Ric recalls.  He mentioned the big trip to Italy, scheduled for November, that he and his wife, Bette, had been planning for years.   Tewari said it should be fine, and it turned out to be a wonderful trip.

Ric’s play, “How Do You Say Prostate in Italian?” covers what happened next in some detail:  the MRI, which had radio music piped in, including ad for Dunkin’ Donuts in between soothing classical music pieces; the hospital, where he was delighted to have a private room (“It could spoil a guy!”); walking the hospital floors after surgery, with his catheter, “pee bag,” and abdominal drain; important milestones, from passing gas after surgery to getting the catheter removed, to buying pads, getting biofeedback and learning to do Kegel exercises while he dealt with temporary urinary incontinence.  And it’s funny!  And enthusiastic, and full of gratitude.

Not so fast:  Ric’s PSA started to go up again after his surgery.  “I had thought I was out of the woods… not so fast, Kimosabe!  I had thought the PSA being elevated post-surgery meant that maybe there is cancer… nope.  It means yep, there’s cancer, and we have to deal with it.’”

Christmas of 2018 was a time for reflection.  Ric made a note:  “I’ve lived my life mostly feeling kind of indestructible, so it’s sobering to feel, well, destructible.  One thing that I know for sure as I sit here quietly with the dog and a beautiful tree with presents arrayed around it, under it and on it, and my wife and daughter sleeping peacefully upstairs, is that I want to be here next year to do it again, and the next and the next… and I’ll do whatever it takes to make that happen.”

Under the care of medical oncologist William Oh, M.D., and with the goal of “total eradication of the cancer,” Ric had a short course of hormonal therapy and eight weeks of external-beam radiation therapy, which had its own challenges.  When the eight weeks ended, Ric was surprised to find he had mixed feelings.  He wrote: “While the treatments have been happening, there has been a sense of rock-solid purpose.  We’re working together to eradicate this cancer.  I do my part by coming in with a full bladder, no gas and on time, and I get really good at it.  Now that it’s over, we have to wait six weeks – only then will we know for sure.  It’s all about PSA levels at this point.”  Laurette surprised him on his last day of treatment by showing up to ring the official bell – a rite of passage at many radiation therapy centers to say, “I made it through!”

Ric is cancer-free now, and getting on with the rest of his life.  “I was so fortunate,” he says.  “If I hadn’t mentioned my cancer to these guys at the Y, I wouldn’t have met Dr. Tewari,” and through Tewari, Dr. Oh.  “Everything fell together beautifully for me.  If I hadn’t gotten that blood test done, I’d be sitting here a year and a half later none the wiser, and the cancer would have continued to grow.

“The whole point of my play, aside from the personal reflections on living to see the art in Italy, and what it meant to me, and being here after this brush with cancer, is that early detection is really important.  You’ve got to get checkups regularly, and if something’s not right, you have to take the steps to see what’s wrong, go to the best people you can.  I wasn’t really going into this with any great message; I didn’t know what would come out of it or what the next step would be.  It is a cautionary tale for doing what you need to do, as soon as you can.  Silence is not golden when it comes to the prostate.”

Ric has not been silent; one man he spoke to about his experience said, ‘Wow, my wife wanted me to make an appointment with the doctor.  I didn’t go.  I’m going to do it right now.”  He hopes such encounters will be like “ripples in the pool,” men helping each other to be healthy.  When Jerry first told him that one day, he would laugh about his experiences, Ric didn’t believe him.  “I hoped he was right – and he is!  But it’s been quite a ride.”

Recently, Ric did a reading of his play in New York.  Afterward, a woman came up to him; her husband is a prostate cancer survivor.  “She took me aside and said, ‘This is very important, because men don’t talk about this stuff except in whispers.’”

 

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.”

 

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

©Janet Farrar Worthington

 

 

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

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

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

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

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

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

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

“Out of the Blue”

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

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

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

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

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

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

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

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

The Danger Zone

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

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

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

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

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

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

Off to the Races!

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

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

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

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

©Janet Farrar Worthington

 

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