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

 

 

 

 

 

 

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