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Prostate Cancer and Your Gut Part 1: Good Bacteria

Part 1:  Good Gut “Bugs”

How to promote a healthy gut microbiome – and help your body fight cancer.

There are trillions of reasons why we should carefully consider basic lifestyle choices like whether or not to exercise and what to eat, and they’re sitting right in our gut: they are the innumerable bacteria, or microbes, that make up the microbiome of our gastrointestinal tract.

            Individually, each microbe’s ability to influence your health is minuscule.  But there is great power in numbers.  This mega-population of gut bacteria, accounting for about eight pounds of our body weight, has a significant effect – on health, on disease, and even on how well certain treatments work – that scientists are still only beginning to understand.

            One of those scientists, a pioneer in microbiome studies, is Johns Hopkins molecular biologist Karen Sfanos, Ph.D., whom I recently interviewed for the Prostate Cancer Foundation’s website.  She is very interested in the microbiome’s influence on prostate cancer development, progression, and resistance to hormonal therapy in metastatic disease.

            If you have prostate cancer, you already have plenty to think about.  Is it weird to start thinking about your gut microbiome, too?  Absolutely not, Sfanos says.  “It is 100 percent appropriate to think about the microbiome.  There’s good evidence to show that what you eat and whether or not you are sedentary, especially as a cancer survivor, can profoundly influence outcomes in lots of different ways.”

            Exercise isn’t just about muscles and cardio: our gut bacteria benefit from it, too.  When we exercise, our gut bacteria respond by making more formate.  “Formate is a metabolite that helps in so many things,” says Sfanos: “new research in mice with melanoma has shown that it even boosts the response to checkpoint-inhibitor drugs.  The mice that exercised produced more formate than sedentary mice.”  Exercise stimulated the gut microbes, which produced more formate, which boosted the immune system, which then responded better to immunotherapy drugs.

            What can we do to improve our microbiome?  We could try to load up on “good bacteria,” but even this is a moving target with a great deal of variability.  Bifidobacteria, found in many probiotics aimed at “gut health,” are probably helpful, as is Akkermansia muciniphila.  But there’s also an interplay happening all the time in the gut, a balance of bacterial heroes and villains.  It may be as important to have fewer “bad” bacteria strains as it is to have more “good” ones.

            It’s also good to have a bacterial melting pot – many different kinds of bacteria mingling in the gut.  “With probiotics, you are literally taking one or a few bacteria in super-overabundance,” notes Sfanos, “assuming they’re even alive – because you don’t know what you’re actually taking.  Supplements aren’t regulated like drugs.  Basically, you’re introducing an overabundance of something that might potentially be beneficial, but that is not going to top a healthy diet. It may be more important to have a diverse collection of gut bacteria strains than it is to have an over-abundance of particular ‘good’ ones.”

            Also, she adds, “everybody’s microbiome is different.  Everybody’s makeup of good vs. bad bacteria is different. More important is what you can do as a human being to promote the good.”

            So how can we, microbially speaking, light a candle rather than curse the darkness?  The goal, Sfanos says, is not so much to acquire the right bacteria but to encourage our bodies to make their own supply, and there are two major ways to do this:  exercise and diet.  Yes, there are widely available prebiotics and probiotics.  “But at the end of the day, you cannot supplement your way out of an unhealthy diet.”

            Fiber:  The number one thing that promotes the good gut bugs is dietary fiber; 25 grams a day for females and 38 grams for males.”  And here again, it is possible to buy fiber supplements, but it’s better to get this fiber in your daily diet from green leafy vegetables, fruits, beans and legumes, bananas, popcorn, and whole-grain cereals.  To learn more about a prostate cancer-fighting diet, click here.  “Fiber lowers inflammation.” In many diseases, including prostate cancer, inflammation is known to make cancer more likely to develop – or, if cancer is present, to make it more aggressive.

            Fermented foods:  Fermented foods like sauerkraut, kimchi and yogurt, contain “the types of bacteria, like Lactobacillus, that do the good things in your gut – like control pH levels, which are important in terms of preventing growth of pathogens (disease-causing bacteria or viruses) in the gut.”  In fact, she notes, Maria Branyas Morera – a Spanish woman who was verified as the oldest living person when she died in 2024 at the age of 117 – ate yogurt three times a day, and was found to have high levels of Bifidobacterium.  But she also exercised regularly and ate a Mediterranean diet.

            Fatty fish:  Fatty fish, rich in omega-3 fatty acids, and fish oil capsules derived from them, are good for the heart.  They also seem to promote a good microbiome, says Sfanos.  Among other benefits, they increase the gut’s production of known anti-inflammatory molecules, such as short-chain fatty acids.  “The production of anti-inflammatory molecules helps prevent systemic inflammation, a condition that is linked not only to cancer development, but also to cancer progression and worse outcomes.”  What are these fatty, oily fish?  They include salmon, sardines, anchovies, herring, and mackerel.

            Sleep:  Sleep is not just good for the body; it’s good for the microbiome that dwells therein.  “Sleep regulates cortisol, the stress hormone, and other hormone levels,” says Sfanos.  “And it turns out that the gut microbiome has its own circadian rhythm.  Not getting enough sleep can throw that off.” The result is disruption to the gut’s ability to maintain healthy digestion and balance its interactions with the immune system and even the nervous system, leading to inflammation and disease.

             Avoid:  Sugars, processed meat, and prepared food that has a bunch of ingredients with names that are difficult to pronounce.  “Excess sugar is not only linked to obesity – a known cancer risk factor – but is also associated with factors that contribute to systemic inflammation,” says Sfanos.  “Processed meats are known to contain carcinogens that are linked to prostate cancer risk.”  If you don’t recognize them, chances are that your gut microbiome won’t, either.

In addition to the book, I have written much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.   As Patrick Walsh and I have said for years, 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.  Note: I am an Amazon affiliate, so if you do click the link and buy a book, I will theoretically make a small amount of money.  

© Janet Farrar Worthington

 

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Your Own Best Advocate(s)

There is a scene in the great movie, “Independence Day” (1996; the sequel never happened) where Randy Quaid says, “I been sayin’ it.  Ain’t I been sayin’ it?”  He had been trying to make people aware of aliens for 10 dang years.

            I’ve got him beat; I have been encouraging men to be their own health advocates, and women to advocate for the men in their lives, for more than 30 dang years.

            For prostate cancer, being your own advocate starts with screening.  Ideally, with a baseline PSA test at age 40.  Maybe even younger if you have a family history of prostate cancer or cancer in general.  And then stay on it; keep getting tested and watch the numbers.

            See here for PSA specifics; this is from a series I wrote for women specifically, because in so many cases – my own family included – it is the women who get their men to the doctor, or get them to a better doctor if they aren’t being listened to, who sit right there in the exam room and faithfully wait outside the treatment room, and act as advocates for  their husbands, fathers, brothers, friends, and even sons.  In other cases, crucial help comes from a friend, someone who’s been, or is, in your same boat.  Being your own advocate, or someone else’s advocate also means not ignoring red flags.  

                 Recently, a man named Michael, who lives in Indiana, wrote to share his story with me.  It is a good story, and one for the “win” column – but if he had listened to his first urologist, it might not have turned out so well.

            In November 2024, bloodwork for Michael’s yearly physical showed something troubling:  a PSA of 10.7.  This wasn’t his first elevated PSA.  “In June of 2021, my PSA had started to climb.”  His family physician referred him to a urologist.  “He did an exam and told me that he thought everything was fine and that I only had to return if the PSA exceeded 6.5 while in my 70s.”

            RED FLAG.

            For one thing, you can’t just look at the numbers.  By themselves, PSA numbers are meaningless.  For instance, my dad had a PSA of 1.2 when he was diagnosed with Gleason 7 prostate cancer.  My husband’s PSA was 3 when he was diagnosed with Gleason 9 prostate cancer (caught early, treated and is coming up on six years cancer-free, thank God!).

            “In subsequent years,” Michael continues, “the PSA climbed but never above 6.”  If the PSA is changing more than 0.4 ng/ml in a single year, you need to know why.

            A PSA of 6 (or 4, or even 2 in a younger man) is an imaginary line in the sand.  Why 6?  No reason.

            Now, if Michael had benign enlargement of the prostate (BPH), that could be a cause of the elevated PSA.  If only there were a way to rule this out.  Oh, wait!  There is!  There are “second-line” blood and urine tests that look for biomarkers of cancer, in addition to various forms of PSA including “free” and “bound” PSA (basically, the higher percentage of PSA that is free, the more likely you are to be free from cancer, and to have BPH driving up your PSA).

            When Michael’s PSA hit 10.7, he went back to the urologist.  “He did an exam and said everything felt fine,” says Michael.  “He ordered a urine test that looked at genes in the urine and said that it would take about four to five weeks for the results.  In the meantime, I should relax since, according to him, cancer usually makes the PSA go up gradually instead of like a hockey stick.  Well, the scan did not take 5 weeks” to get results.  Of course it didn’t.  Results came back quickly and “stated that I had a 58 percent chance of prostate cancer.”

            Michael’s wife, Linda, with him every step of this journey, went with him to the follow-up appointment.  The urologist told Michael he needed a prostate MRI.  Michael told him he was claustrophobic and would need to be “knocked out.”  The urologist offered to prescribe Valium, but Michael knew that would not be enough.  “He then stated that I need a biopsy.”

            Michael left the office with an appointment for a transrectal ultrasound-guided biopsy – an approach that has a risk of infection, as compared to the transperineal approach, which reaches the prostate from the skin between the scrotum and rectum and has zero risk of infection.  The transperineal biopsy also reaches areas of the prostate that can’t be reached through the rectum, which helped save my husband’s life.

            I’m having doubts about this urologist, and I wasn’t even there.  Michael and Linda were there, and they had reservations, too.  Michael says:  “I asked him what his gut thought he would find in the biopsy, and he said, ‘nothing.’  If we were going to find nothing, why the biopsy?”  But then came what should be, in my opinion, a deal-breaker.  “He told me that no one dies of prostate cancer.”  What??

            BIG RED FLAG.

             Michael personally knew of at least two men who had died of it.  I know of many more, and I just checked the current numbers: an estimated 35,770 American men will die of prostate cancer in 2025.

            The number of deaths is up.  It was going down considerably until 2014.  What happened there, you may wonder?  Oh, just a disastrous recommendation in 2012 from the brain trust called the United States Public Service Task Force (USPSTF) against regular screening for prostate cancer, and resulted in many men being diagnosed with metastatic disease.  In 2018, the USPSTF dialed back this dumpster fire, but the damage was done.

            Michael talked with his priest, who has stage 4 liver cancer.  The priest said, “Get a second opinion.”  Friends helped direct Michael to Northwestern, and he soon had an appointment with Dr. Robert Havey, an internist.  When Michael told him about his urologist’s biopsy plan, Havey gave him good counsel:  “He said that going through the colon was not current best practice, as you don’t have a sterile field.”  Havey was polite, saying he’s sure the urologist was good, “but that sometimes the technology gets ahead of people for a while.  He said first I needed an MRI.  When I explained to him my claustrophobia, he told me, ‘Not a problem,’ they would sedate me.  That it was done all the time.”

            Michael’s biopsy was done by none other than my co-author on the book, Edward (Ted) Schaeffer, M.D., Ph.D., one of the best urologic surgeons in the world.  He knew exactly where to place the biopsy needles, based on the MRI, and found cancer: Gleason 7 (3+4), favorable intermediate cancer, curable cancer.  Schaeffer recommended surgery, and performed a robotic prostatectomy on Michael a few weeks later.

            Recently, Michael had his three-month post-op appointment.  His PSA was undetectable.  “It has been a journey, but looks like we may have kicked this prostate cancer in the butt,” he says.

            Throughout this journey, Michael had the support of his wife, his children and granddaughter, and his church.  He truly had a village.

            I am thrilled for him, because he could still be sitting around with cancer growing inside him, not even knowing about it.  “I am very troubled by the bad information you got from the first urologist,” I told Michael.  “Thank God your priest told you to do what I imagine you and Linda were already thinking – get a second opinion.  Thank God that you got the biopsy, thank God it was Gleason 7, and that now it is gone.”

            The best way to see prostate cancer is in the rearview mirror, as you move forward with the rest of your 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.   As Patrick Walsh and I have said for years, 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.  Note: I am an Amazon affiliate, so if you do click the link and buy a book, I will theoretically make a small amount of money.  

© Janet Farrar Worthington

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Germline Genetic Testing for Prostate Cancer and You, Part 2

            Does everyone with prostate cancer need genetic testing?  No.  Many men are diagnosed with low-risk or intermediate-risk localized cancer, cancer that may not need to be treated immediately or maybe even ever.  But as we discussed in Part 1 of my discussion with Oregon Health Sciences University medical oncologist  Alexandra Sokolova, M.D., some men really do need it — and they and their families can benefit from it.  

Sokolova, whom I interviewed for the Prostate Cancer Foundation’s website, says you should consider germline testing if:

  • You were diagnosed with high-risk localized prostate cancer;
  • Your Gleason score was 8 or higher;
  • Your PSA was over 20 at diagnosis;
  • You were diagnosed with stage T3 cancer (which extends past the prostate or has spread locally); or if you were diagnosed with metastatic prostate cancer, which has spread to sites away from the prostate;
  • Your pathology report shows evidence of intraductal carcinoma or cribriform glands, findings associated with more aggressive cancer.

Family history is a red flag, too:  You should also consider germline testing if your family history includes:

One or more close relatives diagnosed with breast, pancreatic, ovarian, colorectal, or prostate cancer at age 50 or younger; or a relative diagnosed with metastatic, high-risk, or very high-risk prostate cancer;

Two or more close relatives diagnosed with breast cancer or prostate cancer at any age;

Three or more close relatives with Lynch syndrome, a hereditary disorder that raises risk of developing many forms of cancer, particularly colorectal and endometrial cancer;

A family history of Li-Fraumeni syndrome (also known as SLBA, for inherited predisposition to Sarcoma, Breast,Leukemia, and Adrenal cancers);

You are of Ashkenazi Jewish ancestry;

You have a known family history of a germline mutation;

You have a personal history of (male) breast cancer.

How is Germline Testing Done?

            It’s not hard at all, says Sokolova:  “You can have germline testing through a blood test, or you can spit in a tube.  This test can be ordered by your doctor, or you can order it yourself,” through companies such as Color Health or Invitae (through Labcorp).  There are also research websites, where patients can register themselves. “The test gets sent to your house, you spit in the tube, send it back and get the results online,” says Sokolova.  One of these is through the PROMISE study.  “If you have prostate cancer, you can register with www.prostatecancerpromise.org and get free genetic testing.”

            **Please note** Here are some points to consider:

Not all online genetic testing is the same.  Some tests marketed directly to consumers are “considered recreational, and lack the ability to detect clinically important mutations,” says Sokolova.  Clinical genetic testing looks for a larger panel of hereditary genes, so talk to your doctor, do your research, and make sure you know what kind of test you are getting.   Also:

“If you got genetic testing 20 years ago, it’s worth talking to your doctor about repeating the testing, because it has gotten better over the years,” Sokolova adds.

            Protect yourself.  It is against the law for your health insurance company or workplace to discriminate against you because of any risks turned up in genetic testing.  But life insurance and disability insurance are not protected.  Therefore, before your family members undergo cascade testing, especially younger relatives who might not have thought much about life and disability insurance, they “should consider getting those policies in place beforehand,” Sokolova suggests.  Learn more about the Genetic Information Nondiscrimination Act (GINA) here.

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The Turning Point in Prostate Cancer Genetics

There was an earthquake in the prostate cancer community on July 6, 2016.  That was the day a landmark study, which I’m proud to note was funded largely by the Prostate Cancer Foundation, was published in the New England Journal of Medicine.  An international team of investigators found germline mutations in 16 genes, including BRCA, ATM, CHEK2, BRCA1, RAD51D, and PALB2.  These mutations were significantly higher in men with metastatic prostate cancer than in men with localized disease.  Because of this work, genetic tests now routinely look for these faulty genes in men with metastatic prostate cancer.

In addition to the book, I have written about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  I firmly believe that 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.  I am now adding, because people are being diagnosed with many kinds of cancer at younger ages than ever:  If you have cancer in your family, ask your doctor for a baseline PSA test in your 30s.  If you are getting blood work anyway, it’s just one more box for the doctor to check.  Then, to see if your number is right for your age group, refer here.  

©Janet Farrar Worthington

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Germline Genetic Testing for Prostate Cancer and You, Part 1

Does Cancer Run in Your Family?

If you have high-risk or metastatic prostate cancer, you may have been born with a faulty gene, and you should strongly consider “germline” genetic testing, testing of the genes you were born with. 

In my work for the Prostate Cancer Foundation, I recently interviewed an expert on germline genetic testing (despite the name, it has nothing to do with germs, as one patient asked me!):  Alexandra Sokolova, M.D., medical oncologist at Oregon Health Sciences University.  She told me a sobering story:  One of her patients, Eddie,* was diagnosed with metastatic prostate cancer.  Sokolova did germline genetic testing (looking at Eddie’s blood for inherited, cancer-linked mutations) and discovered a faulty BRCA2 gene – a mutation most famous for raising the risk of breast and ovarian cancers (see below).  Eddie said, “My sister has that.”

            One sister had been diagnosed with breast cancer years before. “All his sisters got germline genetic testing,” says Sokolova (this is called “cascade genetic testing,” of family members after someone is diagnosed with a mutated gene). “But he didn’t – because he was a man.”

Eddie and his family didn’t think this gene was something he needed to worry about, and for many years, doctors didn’t think so, either.  Even BRCA2’s name (an abbreviation for “BReast CAncer gene”) and the syndrome it is associated with (Hereditary Breast and Ovarian Cancer Syndrome) now seem misleading – because mutations in BRCA2and BRCA1, a related gene, are known to raise the risk of prostate cancer, too (see side story).  These and others are “DNA damage-repair genes” – genes that are supposed to act as quality control agents, preventing genetic mistakes from being passed on when a cell divides.

            If Eddie had known he was at higher risk, his prostate cancer might have been detected much earlier.  Sokolova thinks about Eddie a lot, and she has dedicated her career to helping high-risk patients and their families.  “About 12 percent of men diagnosed with metastatic prostate cancer were born with a bad gene,” she says.  “If you inherited a mutation in BRCA1 or BRCA2, you are not only at higher risk of getting certain cancers, including prostate cancer:  you are also likely to develop a more aggressive form of prostate cancer.  Patients with these mutations tend to be diagnosed at a younger age, at a more advanced stage of prostate cancer, and are more likely to have a shorter survival.”

            Early knowledge is a game-changer.  The best help Sokolova can provide for patients like Eddie is to arm him and his family with information that could save their lives:  to test men diagnosed with high-risk or metastatic prostate cancer and, if BRCA2 or a similar faulty gene is found, to do “cascade” testing – to test his immediate family.

An inherited cancer gene has a ripple effect.  “If your mother had an inherited BRCA2 mutation, there is a one-in-two (50 percent) chance that you or your siblings inherited the same mutation, and a 25 percent chance that your children did.  Just knowing you have such a gene mutation has significant implications for treatment decisions.”  For example, if you know the genetic deck is stacked and not in your favor, you should consider more aggressive, curative treatment for prostate cancer.  Also, germline testing can identify patients who are candidates for PARP inhibitors, drugs such as olaparib that have proven effective in cancers when there is a mutated DNA repair gene.  Another advantage of early knowledge, Sokolova continues:  “At-risk family members can implement cancer prevention and early detection strategies, and possibly consider risk-reduction surgery.”

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**Key Terms**

Germline genetic mutations:  changes in genes (DNA) you are born with, passed on from either your mother or father. These are different from somatic mutations (found in tumor cells), which are acquired over time, and in which environmental factors play a role.

Cascade genetic testing:  testing family members after someone is found to have a germline (inherited) mutation.

BRCA2: a DNA repair gene.  Its job is to correct errors in DNA, and when it is not working, those mistakes don’t get fixed – and cancer can result.  Inherited mutations in BRCA2 and a related gene, BRCA1, are associated with a higher risk of breast, ovarian, pancreatic, and prostate cancer, among other cancers.  Other mutated DNA repair genes are linked to prostate cancer, too, including ATM, PALB2, and CHEK2.

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Up next, Part 2:  Who should consider germline testing?

In addition to the book, I have written about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  I firmly believe that 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.  Note: I am now adding, because people are being diagnosed with many kinds of cancer at younger ages than ever:  If you have cancer in your family, ask your doctor for a baseline PSA test in your 30s.  If you are getting blood work anyway, it’s just one more box for the doctor to check.  Then, to see if your number is right for your age group, refer here.  

©Janet Farrar Worthington

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Lessons from a Prostate Cancer Survivor

Lessons from a Prostate Cancer Survivor

Ric Siler fought prostate cancer twice, both times with doctors who were going for a cure. Today, five years out, he’s cancer-free and sharing his message of hope with other men and their families.

            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?

            This is what happened to Ric Siler, an actor and writer, who was diagnosed with prostate cancer at age 64.  He’s 71 now, and cancer-free.  How did he get from there to here?  Ric shares several important lessons – things that helped him get through cancer treatment and on to the other side, where cancer is an increasingly smaller picture in the rear-view mirror.

Attitude Matters a Lot

            First and throughout, 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 University of Texas-Southwestern scientist Suzanne Conzen, M.D., and others have 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).  Conzen has shown that decreasing stress lowers cortisol, and this can slow the growth of cancer.  (This is no substitute for treatment, but I firmly believe that every little bit helps, and there are other lifestyle changes that can help slow cancer and make treatment more effective, including changing your diet, reducing your caloric intake, exercising, losing weight and stopping smoking.)

            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.”  (Note:  In my experience, this can be a red flag.  The doctor who can see you right away may not be the one you want to see.  Due diligence in finding the best doctor you can is really important.)  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. 

A Second Opinion: Ask Around!

            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.  This is a good thing for every patient to do.  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.” (And he does.)

            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 this turned out to be the case.

            A one-act play Ric wrote, “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:  But wait – there’s more.  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.

“Silence is Not Golden When it Comes to the Prostate.”

            “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.”

             Several years ago, 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.’”

            Ric continues to act and write, to help raise awareness about prostate cancer and to encourage men to get screened, and to take action if treatment is needed – so that they, like him, can move past cancer and get on with life.  Recently, he said:  “It’s great to be 71 and feel the best is yet to come!”

 

In addition to the book, I have written about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  I firmly believe that 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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Metastatic Prostate Cancer:  Astonishing Improvement and a Landmark Case

New research opens up a whole new avenue for treating advanced prostate cancer.

 One of the best things about working as a writer for the Prostate Cancer Foundation (PCF) is that I have gotten to interview scientists doing some of the most promising research on prostate cancer, a disease that I can’t seem to get away from.   But even better, I have met some incredible men and their families who are true warriors battling this disease.  The LLobets are right up there as some of the bravest, and Rodolfo’s has become a landmark case.  I wrote a much longer, four-part version of this story for PCF, which funded the research that has made such a difference in Rodolfo’s life.

Checkmate, and a Glimmer of Hope

 Early 2024 was a rough time for Rodolfo and Kelly LLobet, and for their family.  An airline pilot and U.S. Navy Veteran, Rodolfo was very close to entering hospice care for his metastatic prostate cancer.  After three clinical trials and nine treatments – none of which worked for longer than a few months – his doctors had run out of options.

It had been a long four years since his diagnosis at age 55 with stage four prostate cancer, and Rodolfo was battle-weary.  The disease had evolved into an even more aggressive form – neuroendocrine prostate cancer – and it was everywhere:  in his neck and brain, in his abdomen and in his bones.  After moving from one impasse to another, it looked like Rodolfo had finally reached checkmate.

            Then came a glimmer of hope:  Physician-scientist Maneesh Jain, M.D., medical oncologist at the DC VA Hospital and George Washington University, believed he had something that might help Rodolfo.  What he had to offer had never been tried in a prostate cancer patient:  off-label use of T-DXd, a drug approved for use in other cancers that produce a protein called HER2.

Jain told Rodolfo and Kelly: “’I’m not sure if this is going to work.  We don’t have any published data to show that this drug has been tried in prostate cancer.  But we see that your HER2 expression is high.  I think it’s worth a shot.’  The LLobets agreed, and here we are.”

In February 2024, thanks to support from The Edward P. Evans-PCF Precision Oncology Center of Excellence, Rodolfo became the first known patient to be treated with T-DXd for prostate cancer.  His improvement was so astonishing that this would become a landmark case.

What drew Jain to this drug?  In research funded by PCF, he happened to be looking at HER2 and other biomarkers using a process called immunohistochemistry.  With Ramesh Subrahmanyam, Ph.D., and colleagues, Jain he discovered that HER2 should be measured differently in the prostate than in other organs – and the team came up with a novel scoring system to quantify HER2 expression in prostate cancer.   (Note:  This is really important, because measuring systems that work in other cancers don’t pick up the true HER2 levels in prostate cancer.)

The drug’s approach, Jain explains, is based on one simple question:  do the cancer cells make HER2 or not?  If the answer is yes, T-DXd – like a heat-seeking missile – homes in on those specific cells using an antibody that singles out HER2.  Then it delivers a deadly dose of chemotherapy directly to those cells. “It’s an incredible drug.”

For Rodolfo, T-DXd did what no other treatment had managed to do:  made a spectacular difference in his cancer and gave him his life back.  After four cycles of T-DXd, Rodolfo showed a 57 percent overall reduction in his cancer, including metastases in the brain.  “His condition improved significantly, defying earlier prognoses that suggested a transition to hospice care due to a lack of treatment options,” Jain and colleagues wrote in November 2024, in a case report published in the Annals of Internal Medicine.  As of this writing, Rodolfo has been on this T-DXd therapy for more than a year. 

            Even after two cycles of treatment, Rodolfo had a “dramatic improvement in his fatigue and his appetite,” says Jain.  “His energy increased, because his hemoglobin increased.  There had been a huge tumor on the left side of his neck, and that shrank so that you could no longer palpate it.  He no longer had bone pain.  With that neck tumor, he couldn’t swallow well on that side, and his vision was impaired on the left side.  A lot of those symptoms went away within a few months.”

Road Trip in God’s Country

“We started T-DXd on February 22,” Kelly LLobet says. Like many cancer spouses, she uses the plural pronoun because they are in it as a team.  “We had a really good response almost immediately.”  So encouraged was Kelly that she began to think about an opportunity for a family trip that – just a month ago – she had not thought would be possible.  The Llobets homeschool their children, as part of a school based in the Northwest.  The school had sent an invitation for a graduation ceremony in June.  “We had a senior in high school and one graduating out of eighth grade,” but June was a long way away.  She had put the letter aside and the decision into God’s hand with prayer.

The graduation event was perfectly timed – right in between three-week cycles of T-DXd.  Rodolfo was all for it.  “We took all four of our sons,” he says, “rented a vehicle and we drove around the Northwest for two weeks.  We saw God’s country out there.  It’s gorgeous!”  They sent celebratory pictures of their trip to Jain and the team at the DC VA, and returned home just in time to start the next round of treatment.

In April 2024, they celebrated 25 years of marriage, and in August 2024, they celebrated Rodolfo’s 60thbirthday.  “Our sons will never forget this trip,” says Rodolfo. “We won’t.”

Another bonus:  T-DXd is a targeted therapy – the rifle instead of the shotgun approach to killing cancer cells.  It only kills cells that make HER2 and those in the immediate vicinity.  Because of this, says Rodolfo, “I don’t have a lot of side effects that I would have if I were getting chemotherapy, and that’s a huge difference.  I have some fatigue and muscle weakness, which I’ve been dealing with, so it’s nothing new.  But there’s nothing beyond that, which is a miracle in and of itself.”

 

Advice for Patients and Caregivers

            Kelly’s advice for other caregivers:  “Build a relationship with the doctors, the technicians, the nurses, with every single person” involved in the patient’s care.

Also:  Educate yourself as much as possible, Kelly continues.  “Read the emails from PCF.  Look things up.  Ask questions.  Go to clinicaltrials.gov.  Find out what can be done for your loved one.  A faith community is key:  you need all of that support.  If you’re holed up in a corner not talking to anybody, then that’s not possible.”

            Rodolfo says the worst time for him was the diagnosis.  Then it was time to get busy.   His advice for patients:  “Once that scare pinnacle has come and gone, go to your doctors, go to PCF.  Don’t be afraid to ask questions and find out what your resources are, because you might be missing out on something.”

 

***Update:  June 30, 2025, very sad news. I just learned from PCF that Rodolfo has passed away.  God bless and comfort Kelly and his sons.  I am leaving this story posted because I believe there is potential to HER2-directed treatment for men with prostate cancer who express this protein, and if you have metastatic prostate cancer, you need to explore every avenue you can.  It may be that identifying HER2-positive cancers early on, and starting treatment with a drug such as T-DXd when the cancer burden is lower, could prolong survival and quality of life for significantly longer.  Just my two cents.

In addition to the book, I have written about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.  I firmly believe that 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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Don’t Undertreat Metastatic Prostate Cancer!  Part 2

Roadblocks to Combination Therapy, and Paving the Way for Success

            As we discussed in Part 1, the year 2015 was a milestone in treatment of early metastasis (metastatic hormone-sensitive prostate cancer, or mHSPC).  For the first time, the CHAARTED study showed that men with mHSPC who began ADT (androgen deprivation therapy, which shuts down testosterone) plus chemotherapy (docetaxel) lived significantly longer than men who started treatment with ADT alone.

This study was the first of several that changed the standard of treatment for early metastatic prostate cancer to combination therapy:  ADT plus docetaxel or ADT plus an androgen-receptor pathway inhibitor (ARPI; these drugs include enzalutamide, abiraterone, apalutamide, and darolutamide) or ADT plus chemo plus an ARPI.

With combination therapy, median survival – again, some men live much longer – is now about five years, compared to around three years a decade ago.  The results continue to improve as new drugs are developed and doctors keep pushing the treatment envelope.  This improvement is monumental, says medical oncologist Neeraj Agarwal, M.D., of the University of Utah’s Huntsman Cancer Institute.  I recently interviewed him for the Prosate Cancer Foundation’s website.   It’s particularly so, he continues, “when you consider that some anticancer drugs get approved based on a three-month survival benefit.  There is no doubt that ADT alone is not sufficient.  It works so much better when it is combined with one of these ARPIs.”

And yet.  This is not the case for thousands of American men with mHSPC, Agarwal states:  “A lot of patients in the U.S. – the richest country in the world – are not getting ADT plus ARPI  or ADT plus ARPI plus docetaxel, up front.  That is unacceptable in our view, because of the significant survival advantage and quality-of-life benefits associated with combination therapy.”

 What is the problem?  Unfortunately, there are several.

“There is no shortage of evidence that combination therapy works,” says Agarwal.  However, “the number one reason that combination therapy is not being used up front in patients with mHSPC is lack of awareness of the data.”  A lot of clinicians have a pre-2015 mindset about mHSPC.  “They fear that if you use everything up front, what will you use later?  They want to keep these therapies for the time when ADT fails.”

But here’s the thing:  using both therapies up front may significantly delay or even change the course of mHSPC. Nobody really knows; there have been no long-term studies because this standard of care is still too new.  However, in my experience of studying and writing about prostate cancer over the last 30 years, I will tell you that all of the things that used to be done as a last resort have done much better when used as weapons against prostate cancer sooner rather than later, when cancer is more vulnerable.  We’re not there yet, in terms of being able to put all men with prostate cancer into a durable remission, but that is the goal.

Agarwal is the senior author of a striking study published in 2023 in the Journal of Urology, looking at how physicians in different specialties treat men with mHSPC.  “We found that combination therapy was underused as a first line of therapy across urology and oncology specialties despite evidence of improved survival,” he says. “In subsequent lines of therapy, ADT plus ARPI was prescribed more frequently across specialties,” but these men would have been better off if they had hit mHSPC with both barrels from the start. 

“We found that many physicians are worried about the side effects of these medicines,” says Agarwal.  “In a lot of medical oncology practices, doctors are dealing with many different types of cancer in a given clinic, so do they have enough time to delve into prostate cancer only?  On the other side, many urologists are very busy surgeons.  How much time do they have to spend on learning about the latest data?  Misconceptions happen because of lack of awareness.  They think, ‘these drugs have toxicities; we need to keep them for later.’  They’re not aware of the data; that’s why they have these misconceptions.”

But it gets more complicated.  There are financial roadblocks, as well.  In our  country, medical care in general is expensive and complicated, and many medical practices rely heavily on a small team of people whose job is simply to be on the phone with insurance companies every single day, advocating for patients.

“Using combination therapy is associated with more workload for clinicians and their practices,” says Agarwal, “especially if you don’t have enough support staff.  Many solo oncology practices don’t have the support of an in-house nurse practitioner, pharmacist, or big team of financial people who can write letters or talk on the phone with insurance companies.”  There are copay issues with combination therapy, he continues, and also issues arising from comorbidities – other health problems requiring other drugs that may interact with one ARPI versus another.

Here’s an example:  “Eliquis (a blood-thinning drug) is quite common.  But it has an interaction with enzalutamide.  You either have to talk with a primary care doctor or cardiologist to see if you can have Eliquis switched to something else, or you have to fight with an insurance company to switch to abiraterone or darolutamide if they have enzalutamide as their preferred agent.”

With insurance and also with Medicare, out-of-pocket copays are a big problem for many patients.  One option for the man on Eliquis might be abiraterone, which has another major benefit:  Abiraterone has been around long enough that it has “gone generic,” and is much less expensive than other ARPIs.  “This man could get abiraterone for $170 a month.  But many patients have zero copay for enzalutamide; it’s $15,000 per month, but their copay is zero.”  If this man only has Medicare, “and he doesn’t have a backup insurance plan to help with the out-of-pocket costs, it can be very challenging to afford that monthly copay,” which could run into the thousands each month, depending on a patient’s insurance plan, and whether he – not to mention his spouse or partner – is on any other expensive medications.

What about a coupon?  Unfortunately, coupons don’t always help, Agarwal continues.  “Say you have a coupon from a pharmaceutical company for $200 for your copay.  That is not considered by the insurance company as support for the copay.  Instead, it’s considered as a contribution toward the base price of the drug, which is wrong.”

It sure is.  Agarwal has been advocating on Capitol Hill for legislation to help relieve the financial burden for patients with cancer.  The recent Inflation Reduction Act contains a provision that allows Medicare to negotiate the price of some prescription drugs.  Additionally, “patients on Medicare will have a $2,000 yearly cap on out-of-pocket prescription drug costs, starting this year,” says Agarwal, “so that should help.”

Maximize Your Odds for Success

Here’s something Agarwal always tells his patients before they start combination therapy:  “Yes, you will feel overwhelmed, because your life has changed.  But I have a lot of patients who are living for years – beyond a decade  – and I give them this hope:  You could be one of them.”

            Just as the best way to target early metastasis is to hit it hard, right from the beginning, the best way to approach combination therapy is to address all of its potential side effects right up front.

The drugs can take a toll, says Agarwal.  “There’s fatigue, loss of muscle mass, the risk of metabolic syndrome, increased fat around the midsection, increased cardiovascular risk, increased risk of stroke, quality of life issues – hot flashes, inability to perform your daily duties to the max, and the effect of treatment on your marriage and romantic life.  But there are ways to handle all of this.”

            Here are some key points for doctors and patients to consider:

            Exercise:  cardiovascular exercise with resistance training “is more important than ever.”  Agarwal is principal investigator of a NCI-funded study that starts combination therapy patients on a yearlong exercise program.  As we have discussed, for men with mHSPC, any exercise is better than none, and even light weights and short bursts of exercise can make a big difference.

            Taking care of the heart:  “Screening for cardiac issues is more important than ever, too, says Agarwal.  When he starts patients on ADT plus an ARPI, “it’s routine for me to do EKGs in my clinic, especially in those patients who seem to be prone to cardiac disease.”  These include men who have a history of smoking, or who are overweight or who don’t have a very active lifestyle, or who feel short of breath.  He works with cardiologists and family physicians to make sure the patients get a stress test, cholesterol and other blood tests, or other workups if needed.

             Taking care of the bones:  “So many times this is missed,” Agarwal says.  “If somebody already has low bone density and then starts on ADT and an ARPI, he will start having fractures.  Vitamin D, and calcium plus exercise really go a long way to help strengthen the bones. We recommend bone-modifying agents to those who have thin bones to start with.”  Diet can help here, as well:  leafy green vegetables are really good for the bones.

             Social help can be huge:  “It takes a village, especially in the early days,” says Agarwal.  “I tell my patients, ‘You need to get over this immediate barrier, these seemingly insurmountable barriers of tests, medications, and insurance – so let’s work together.’  That’s why a social worker and financial counselor play such big roles in the beginning.”

            And then… “These same patients, their insurance resolved, all the screening done, the combination therapy begun – their PSA has dropped.  They are feeling great.  They don’t have pain, they’re feeling much better.  They come back and say ‘Thank you very much.’  After six months, their whole family has a sense of relief.  Those first three to four months are crucial.  And then, after six months, I really hope we can say we did it together.”

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, 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.  Note: I am an Amazon affiliate, so if you do click the link and buy a book, I will theoretically make a small amount of money.  

© Janet Farrar Worthington

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