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Gene-Targeted Treatment for Prostate Cancer

In a matter of weeks, Mark Meerschaert went from being an athlete to someone who could barely walk; metastatic prostate cancer had come from nowhere and spread like wildfire throughout his body.

A highly respected mathematics professor and researcher – the kind who fills up the blackboard in his classroom with labyrinthine calculations to answer questions of probability, statistics, physics and the like – he did what he does best: looked at the numbers. Men with widespread prostate cancer that is not responding very well to standard-of-care treatment don’t live very long.

So then Mark did what I hope everyone with a challenging diagnosis will do: He became his own advocate. He did some research and found a different doctor, Heather Cheng, M.D., Ph.D., a medical oncologist at the Seattle Cancer Care Alliance, University of Washington School of Medicine and Fred Hutchinson Cancer Research Center. She also started the world’s first prostate cancer genetics clinic.

It turns out that Mark has a mutated gene that runs in his family. It’s called BRCA2, and when it is not working as it should, it’s more notorious for increasing the risk of breast and ovarian cancer; recently, scientists discovered that it increases the risk of prostate cancer, too.

Because of Mark’s bad copy of BRCA2, Cheng immediately focused on this gene and suggested a very different type of treatment – off-label use of a drug called olaparib, currently approved by the FDA to treat ovarian cancer. Olaparib is a PARP inhibitor; basically, it blocks a protein that cancer cells need to repair themselves, and has worked especially well in people with defects in the BRCA2 gene. Olaparib and other PARP inhibitors such as rucaparib and niraparib are currently being studied in clinical trials for prostate cancer patients.

I want to pause here just for a moment to make two points. First, among the many very smart things Cheng did was to get genetic sequencing of tissue from Mark’s metastatic cancer.   This is because cancer can change over time. We’ll talk more about this in a minute, but if you have metastatic cancer, there may be different mutated genes than in the younger cancer that was originally diagnosed from the needle biopsy of your prostate. This matters because there may be a new medicine that works well with your particular mutated gene or genes. The other really important point is that, because these new drugs are so specific, they don’t work for everybody. One drug might only help a small percentage of men. But another new drug might help a different small percentage, and a third new drug might target still another small percentage – and you might fit into one of those groups. So take heart! There are entirely new drugs being developed.

“She said, ‘Let’s try something else,’” Mark recalls. Cheng told him that the medicine may take a few months to kick in fully. “I started olaparib in October of 2016. At the end of 2016, we did a bone scan, and saw that there was cancer all over the place: my ribs, hips, legs – I can’t remember all the places – some lymph nodes. One day, I walked my dog, and I had to sit down,” right in the middle of the walk, “and rest for 20 minutes.”   That fall, Mark – on the faculty in the Department of Statistics and Probability at Michigan State University in East Lansing – organized a conference.   He was the moderator, and was supposed to stand up for five minutes between talks and moderate discussions. “I couldn’t stand up for five minutes.”

He used a cane, then a walker, then a wheelchair. He took a leave of absence from his job. Now he is looking forward to going to work. “The great thing is,” starting early in 2017, “I just slowly started to feel better and better,” he says. “At some point, I said, ‘Maybe I can go for a walk again. I had a little numbness in my foot, but I said, ‘I’m going to keep walking,’ so I did. I walk my dog every day, a couple of miles. Now even the numbness is gone.

“In the last six months, I’ve gone from shockingly, disastrously ill to feeling – I’m still cautious, still waiting for the other shoe to drop; nobody knows how long this is going to work,” Mark told me when I interviewed him for the Prostate Cancer Foundation’s website, pcf.org. “There’s no data on people like me. Now I feel great.”

Unexpected Family History

Mark is one of the pioneers of gene-targeted treatment for prostate cancer – medicine that, as Cheng explains, “is tailored to the weakness of his cancer resulting from a specific gene mistake in that cancer, rather than just treating it the same as all prostate cancers.” In other words, treating the gene, not the cancer.

“I knew that I was BRCA2 positive before I was diagnosed with prostate cancer,” he says; after his brother was diagnosed with breast cancer, several members of Mark’s family got genetic testing. But he never expected to get prostate cancer. In fact, although Mark had gotten a PSA test every year, he had stopped. “My doctor said, ‘We don’t need to do PSAs.’ For two years I didn’t get a PSA.”

Mark believes the policy of not screening men – which recently was revised – because of a fear of overtreatment is misguided. “A PSA costs almost nothing. To me it’s a misreading of the statistics,” somehow saying it’s worse for some men to get unnecessary biopsies than for other men to miss their shot at an early cancer diagnosis.

In 2013, Mark developed some urinary symptoms and went to see a urologist. Cancer was found.  Around this time, he received some bombshell news: “My dad had prostate cancer. But I never knew that until after I was diagnosed. Had I known, I would have kept PSA screening.” Mark’s father had been treated for prostate cancer when Mark was away in college, and his parents never said a word. “I’m a big fan of sharing knowledge with your family, even though it might be a little embarrassing. You might not feel comfortable talking to your kids about things like impotence, but they really need to know.”

Mark underwent external-beam radiation therapy and a two-year course of androgen deprivation therapy (ADT), which ended in March 2016. “By July of 2016, something just felt a little off. I went to see a urologist. He said, ‘I don’t think it’s anything to worry about, I saw something kind of weird, so I sent it off for a biopsy.’ It came back as high-grade cancer,” Gleason 9. The prostate cancer had come back with a vengeance.

Genetic tumor sequencing: When Mark went to the Seattle Cancer Care Alliance, “they got the tissue from last July and sequenced it.” As Cheng suspected, the genetic makeup of the cancer in Mark’s first prostate biopsy in 2013 was not the same as the tissue removed in 2016, after the cancer had time to mutate and become more dangerous. “They found out that I have the BRCA2 mutation in one of the two copies in my germline, but in the metastatic cancer cells, it was mutated in both copies.

“Dr. Cheng said, ‘Your cancer is very aggressive, but that might work in your favor going the other way.’ That turned out to be absolutely correct. It got bad really fast, and it got better really fast.” He is still taking the olaparib. “I guess I’ll keep taking it as long as it works.   The question is, what happens next?

“I’m very interested in things like the five-year survival rate for people like me. Nobody knows. They’ve only been using this since 2015, and the studies were on ovarian cancer.”

So there are no guarantees. However, Mark says, “I can deal with that. I do feel like this is something pretty remarkable. My God, what if this had happened five years ago?”

Update:  I wrote this in 2017.  It is now 2021, and I just learned that Mark passed away in August 2020.  I don’t know any of the details, but the obituary said “after a courageous battle with cancer.”  I can only assume that the prostate cancer came back, although it’s possible it could have been a different cancer linked to a BRCA mutation.  If Mark had gotten this treatment today, and the cancer had come back, it might have been possible to hit it from another angle with PSMA-targeted treatment.  I am just devastated to hear this.  He was an inspiration to many.

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

 ©Janet Farrar Worthington

 

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Surviving Cancer and Beyond

I had the privilege of meeting Paul Calobrisi through my work with the Prostate Cancer Foundation.   He is a prostate cancer survivor, and also a bladder cancer survivor. Basically, he is someone who has seen way, way too much cancer – in himself and in his family. He is also a remarkable person who has gotten through really awful things by being a smart partner in his own care. Somehow, he has managed to keep his sense of humor, too. Read more

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Hope for the Future:  An Engineered Bladder 

health tissue “Tissue engineering is the ultimate in reconstruction,” says David McConkey, Ph.D., Director of the Greenberg Bladder Cancer Institute at Johns Hopkins, “and we have a fantastic team” working to create a new bladder out of a patient’s own cells.

Using a scaffold to layer stem cells and similarly “plastic” cells called progenitor cells – kind of like chameleons, they can become different types of cells, depending on their environment, urologist Trinity Bivalacqua, M.D., Ph.D., and colleagues are doing “3-D chemistry,” McConkey explains.  Getting these cells to take their proper places on the scaffold has been a huge challenge, “but Trinity solved it.”  If this work proves successful, one day instead of crafting a neobladder (artificial bladder to replace a cancerous one) out of bowel tissue, surgeons will simply remove the old bladder and put in a brand new one. 

I interviewed McConkey and Bivalacqua recently for Discovery, a magazine published by the Brady Urological Institute at Johns Hopkins.   “We envision developing a clinically functional, tissue-engineered bladder by the end of 2025,” Bivalacqua told me.  He and a “regenerative urology” research team are working hard toward this goal, buoyed by recent breakthroughs in the practical mechanics of how to do it.

The key is the organic framework that allows the patient’s own cells to grow over it.  Bivalacqua is the first investigator to successfully complete a Phase 1 clinical trial in bladder cancer patients using this “autologous cell-seeded scaffold” to replace the urinary system after radical cystectomy, the surgical procedure to remove a cancerous bladder.  “Although the Phase 1 trial demonstrated regeneration of urinary tissue, the neo-urinary conduit was not durable,” so the team brainstormed and “outlined a road to success,” Bivalacqua says.

The interdisciplinary team includes Bivalacqua, a surgeon-scientist, Anirudha Singh, Ph.D., a biomaterials and tissue engineer, and Nikolai Sopko M.D., Ph.D., a stem cell biologist.  Their strategy begins with designing more durable materials “that will function as urinary tissue for a long time.  The use of regenerated urinary tissue is necessary.”  Currently, replacement bladders are made using part of the patient’s own intestine; this is not ideal and complications are common.

Singh’s laboratory recently developed a novel process to make collagen scaffolds for “urological neo-organs.” Collagen, Bivalacqua explains, “is one of the most suitable biomaterials, and is a natural choice here.”  But developing a good scaffold proved a tough challenge, “until Singh’s laboratory created a simple yet elegant collagen molding technology, which resembles synthetic polymer processing methods, to create neo-organs.” The versatile design has “unprecedented features and user-controlled mechanical and biological properties.”  A patent is pending.  “Specifically, this process developed hollow and tubular collagen systems ranging from ureter-like micro-sized tubings to tubes with designer lumen that resembles intestinal villi, to complex seaweed-like structures as multiple mini-bladders for regenerative urology applications.”

This research was published in Nature Biomedical Engineering.  As Singh continues to refine the scaffolds, Bivalacqua and Sopko’s laboratories are developing animal models for testing them. 

©Janet Farrar Worthington

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Prostate Cancer and Your Genes

If your mom had breast cancer, that could raise your risk for prostate cancer.  If you have aggressive prostate cancer, your daughter might be at higher risk for ovarian or breast cancer.  Some “bad apple” genes run in families; doctors know what they are, and there’s a blood test to look for them.

For the last two decades or so, doctors and scientists have talked a lot about genes and genetic testing, and about gene-fixing medicines that can stop cancer in its tracks. Until recently, with a few exceptions, that’s mostly what it has been: talk, and frankly, a fair amount of hype.

That’s changing.  I recently interviewed Jonathan Simons, M.D., medical oncologist and molecular biologist, and also President and CEO of the Prostate Cancer Foundation, which has funded some of the most exciting research in this area.   “Everybody talks about genes,” he says.  “But what really matters is, how does it help you?  How can it help your children and grandchildren?” 

medical laboratoryA new blood test called the Cascade Genetic Test looks for mutations in several known “bad apple” genes.  These are genes that are supposed to repair DNA damage. When they malfunction, it is easier for cancer to develop. 

What does this mean to you?  Well, say you’re a man with a rising PSA, and a biopsy shows just a small amount of low-grade cancer.  Your doctor might want to wait and do another biopsy in six months to a year, and you might decide to get yet another biopsy a few months after that.  But what if you could add a very important piece of extra knowledge to the puzzle?  What if you could find out whether you have one of these bad genes?  That might lead you to seek treatment right away, before the cancer has a chance to get established outside the prostate. 

Another thing: “If a man tests positive for one of these genes, his sisters, brothers, and children will need genetic testing, as well, because of the high probability that their cancer risk has been significantly elevated,” says Simons.  “Men on active surveillance should have these genes tested.”

Very important: Testing positive is not a cause for alarm, or for making panicky, hasty decisions.  “Genes don’t have to be your destiny,” notes Simons. 

In other words, if you have one or more of these genetic mutations, cancer is not a done deal.  But it’s on the table.

A man diagnosed with prostate cancer who has one of these mutated genes needs to take that cancer diagnosis very seriously, even if it seems to be low-level, “safe” prostate cancer. 

It turns out that more than half of American men are carrying a gene that they inherited from either their mother or their father that increases their chances of getting prostate cancer.  “We now know that prostate cancer is perhaps the most heritable of all the major cancers,” says Simons.  Again, having one of these bad genes doesn’t mean that cancer is inevitable – which also means that having a healthy diet and lifestyle may help prevent cancer from ever getting started – but it can make it easier for cancer to spread and become difficult to treat.

“The genes tell their story,” says Simons.  The good news is that, for the first time, a test can provide the Cliff’s Notes preview of what that story might be.   For more on this test, keep reading.

Bad “Spell-checker” Genes

mindless wanderingAn important study, led by Fred Hutchinson Cancer Research Center medical oncologist Peter Nelson, M.D., funded in part by the Prostate Cancer Foundation, and published in the New England Journal of Medicine, is changing how we think about prostate cancer. What Nelson has found can be summed up like this: 

Prostate cancer is a lot more of an inherited disease than anybody thought;

There are 16 bad genes that we now know to look for; and

If you have a mutation in one of these genes, your sons and daughters, and their children need to know about it, because they are more likely to develop cancer, too.

Every gene has a job.  Some of them act like brakes that control cell growth; some do just the opposite, and instead of curbing growth, they step on the accelerator and speed it up in a bad way.  Some genes are tiny Xerox machines, making genetic copies.  And some genes are little quality control specialists; they’re the spell checkers. 

The genetic mutations we are born with are called germline mutations.  Those are different from the kind of incremental gene mutations that develop over time – through exposure to carcinogens in cigarettes, for example, or eating a bad diet, or drinking too much alcohol.   

Nelson’s study looked at these inherited mutations in 20 spell-checker, or “DNA-repair,” genes, in 692 men with metastatic prostate cancer at institutions in the U.S. and United Kingdom.  They found mutations in 16 of them, including some unexpected ones, like BRCA1 and BRCA2. 

“Now wait,” you may be thinking, “aren’t they the breast cancer genes?”  Yes, and for years, these genes were not significantly linked to prostate cancer.  Now we know that the very same mutation that can cause breast and ovarian cancer in women can cause lethal prostate cancer in men. 

Other bad DNA-repair genes include one that sounds like it should be at a bank, called ATM; and one that sounds like a roadie making sure the microphones work at a concert, called CHEK2; there’s RAD51D; and one that sounds friendly but isn’t at all, called PALB2, which is strongly involved in pancreatic and breast cancer.

These gene mutations are rare in the general population, but startlingly common in men with metastatic prostate cancer:  Because of this work, Nelson and colleagues estimate that one in nine – 12 percent – of men with metastatic cancer have them, even if they have no family history of prostate, breast, or ovarian cancer. 

And this last part is actually hopeful because it means that cancer is not inevitable if you carry one of these mutations.  It may well be that if you live your life doing some things that we know help prevent or delay prostate cancer – not eating a lot of red meat and dairy products, eating foods like broccoli and tomatoes, not smoking, not drinking an excessive amount of alcohol, and not being overweight, which adds stress to your cells and makes them less resistant to cancer – that you will never develop prostate cancer.  And if you start getting screened for prostate cancer at age 40, and if you are then screened every year to look for changes in your PSA and other markers, that if you do develop cancer, it will be caught early and you will be cured.

headacheSo don’t despair.  But if you have metastatic prostate cancer, Nelson recommends that you get genetic testing, because your kids and grandkids need to know if one of these bad genes runs in the family – so they can be considered high-risk for certain types of cancer, screened vigilantly, treated aggressively if cancer is found, and most important of all, live to a ripe old age and not die of cancer.

Other hopeful news:  There are entirely new kinds of cancer-fighting drugs that target specific genes.  One class of drugs is known as PARP inhibitors, and the standout in this class is Olaparib, which is being used to treat women with BRCA mutations in ovarian cancer.  It has now been approved as a treatment for advanced prostate cancer in some men. 

What should you do?  If you have high-risk or metastatic prostate cancer, or if you have a strong family history of prostate or other cancers, ask your doctor about this test. It costs $250 at Color Genomics.

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

 ©Janet Farrar Worthington

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Active Surveillance for Prostate Cancer: Questions to Ask

christopher_barbieri“There’s no one way to select candidates for active surveillance,” says urologist and molecular biologist Chris Barbieri, M.D., Ph.D., of Weill Cornell Medical College/New York Presbyterian Hospital.  In addition to doing molecular research on prostate cancer, he treats men with all kinds of prostate cancer and works with several hundred patients currently on active surveillance.

Some hospitals have very specific criteria.  For example, at Johns Hopkins, men selected for the active surveillance program are considered “very low-risk.”  These men have Gleason score 6 cancer in no more than two biopsy cores; in each of these cores, cancer is present in half or less; their PSA density (PSA divided by prostate volume; this can be helpful if a man has benign prostate enlargement, or BPH, which is a separate prostate problem and is not cancer) is 0.15 or less; and they have no cancer that can be felt on a rectal exam.  Other men in the Hopkins program have “low-risk” cancer: no cancer that can be felt on a rectal exam, a PSA below 10, and Gleason 6 cancer on their biopsy.  All men are monitored faithfully, with regular follow-up visits and yearly biopsies, although recent studies suggest that some men can still be safely monitored with a longer interval between biopsies.

Other hospitals take it more on a case-by-case basis.  The truth, says Barbieri, is that “nobody knows the perfect way to do this.  There are many hospitals where physicians are taking very reasonable approaches,” even if they differ on the exact specifics.  “The principle is that it’s for men with a low volume of disease, and a low grade of cancer.”  However, he adds, the National Comprehensive Cancer Network’s newest guidelines, unanimously developed by a panel of the country’s top urologists and scientists, has stated that selected patients with Gleason 3 plus 4 disease can also be considered for active surveillance.  “Age comes into play,” he says, as does the man’s general health.

medical labHow often should men on active surveillance get repeat biopsies?  “There’s no formal consensus,” says Barbieri.  “Quite frankly, we as a field are still trying to figure out how to do this perfectly, what’s working best and what’s not working.”  Although some men on active surveillance decide to have the cancer treated just because they’re anxious about it, “I think that’s improving, as we get the message out that some prostate cancers clearly are never going to threaten a man’s health during his natural lifetime.  The diagnosis itself becomes a little less threatening.”  There has been a major shift in attitude, he adds.  “More men are open to active surveillance, and are comfortable with the idea of watching the cancer instead of treating it right away.”

If there is going to be a “grade reclassification” – if a repeat biopsy finds a greater volume or a higher grade of cancer – it usually happens within the first two years.  “For most active surveillance protocols, the definition for when a cancer has progressed is based on a change in the grade,” says Barbieri.  “So if you had a Gleason 3 plus 3 cancer, and we find a higher grade of cancer with another biopsy, you are considered to have progressed on active surveillance, and most experts would suggest treatment.” 

Thus, a change in the grade of cancer can be a game-changer (meaning you go from being on active surveillance to needing treatment).  So is a change in the volume of disease.  “If a man has two cores of his initial biopsy positive for cancer, and the next time, 6 or 8 cores are positive, that’s a lot more cancer there,” and this likely needs to be treated.

What about the risks from having a lot of repeat biopsies?   “The major risk is the risk of infection,” Barbieri explains.  “The current data suggest the risk is between 2 and 5 percent per biopsy.  If you roll the dice enough times, you’re more likely to get an infection.”  The risk can be minimized in several ways, including prescribing different antibiotics after each biopsy (to help avoid resistance to the drugs), and doing a rectal culture to determine the presence of certain bacteria, and selecting antibiotics based on that.  Other risks, besides infection, include having trouble urinating after a biopsy and – this is a very small risk – the risk of excessive bleeding that requires a transfusion. 

doctor medicineWhat questions should you ask your urologist about active surveillance?

Here are a few that Barbieri suggests:

Does my cancer need to be treated now?

Given my age and general health, is this a good treatment for me?  If you are a young man, perhaps in your early fifties, you may decide to get your cancer treated, so you don’t have to think about it anymore, Barbieri says. 

Should I get a second opinion on my biopsy? Most likely yes, says Barbieri.  “In my experience, it is very rarely a bad idea to get a second opinion.”

You may also be wondering:  When can I safely stop active surveillance?  The answer there is, “We don’t know yet when it’s safe to stop active surveillance.”

What about red flags from the doctor’s perspective?  Even if a man seems to have low-grade, low-risk, low-volume cancer, are there reasons why active surveillance is not for him?  “I don’t think I would deny any man the opportunity to be on active surveillance if he understands the risks.” says Barbieri.

However:  If you are a man of African descent, you are at a higher risk to have prostate cancer, a higher risk to have more aggressive prostate cancer, and at a higher risk to die of prostate cancer if you do have it.  Even if it seems to be the “good” kind. You can still be on active surveillance, but careful urologists such as Barbieri will keep an especially close eye on you.  “I’m more likely to order additional tests for African American men,” including an MRI and genetic tests.  “Most small or even medium-sized cancers really can’t be seen on transrectal ultrasound.  MRI can show this.  It can give you a lot of information about the location of a possible tumor, and whether the tumor is higher-grade.”  However, MRI is more expensive; it also can generate false positives and lead to additional biopsies.

Another red flag for Barbieri is the man’s family history.   “If somebody looks like he should be fine on active surveillance and has a bunch of prostate cancer in his family, that’s reasonable as long as you’re keeping a close eye on him.”  However, he is concerned “if a man’s family members died of prostate cancer, especially at a fairly young age.  I always ask that question: what happened with the prostate cancer?  If your dad had it and died at age 60, that’s a different situation than, say, your dad got it at age 78 and got hit by a bus at age 97.”  When the family history has men dying of prostate cancer, this suggests that a different kind of cancer – the opposite of indolent; in fact, aggressive enough to kill – may be a possibility. 

And the presence of Gleason 4 disease makes Barbieri wary.  “Gleason 4 plus 3 disease and above, or any young man with any Gleason pattern 4.”  The presence of Gleason 4, especially in a younger man, suggests that the cancer may be more aggressive than it seems and that it probably needs treatment.

Finally, what about red flags from the patient’s perspective?  What should a doctor not be doing?  Beware of over-frequent biopsies, says Barbieri.  “If a doctor is doing biopsies more often than in the range of consensus, after a first confirmatory biopsy to know there wasn’t high-grade cancer missed – doing it more than yearly is hard to justify.”  Also, beware of a doctor who orders lots of tests and can’t really give you a good explanation for why you need them.  For example, “frequent transrectal ultrasound on active surveillance doesn’t really help” do anything except pad the doctor’s bottom line, rather than serve the patient’s best interests. 

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

 ©Janet Farrar Worthington

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Active Surveillance for Prostate Cancer

What You Need to Know

Is active surveillance right for you?  The answer to this question varies, depending on a bunch of factors: your particular form of prostate cancer, your age, and general health, and also on the criteria used to select men for active surveillance programs from hospital to hospital; some are stricter than others.

Men who are eligible for active surveillance have cancer that shows all signs of being the “good” kind:  slow-growing, low-volume (meaning, there’s not very much of it in all the tissue samples from your prostate biopsy), not aggressive. 

men thinkingCan men live with slow-growing, low-volume prostate cancer?  Absolutely.  The proof of this is found every day, in many thousands of autopsies done around the world, of men in their eighties and older who died of something else – a heart attack, for instance.  Then, in the autopsy, the pathologist looks at the man’s prostate and sees cancer in there.   This cancer is what doctors call “indolent.”  It’s low-risk.  Slow-growing, low-volume. It sits there.  It doesn’t cause any harm, and clearly never needed to be treated, because the guy never knew he had it and died of something else.  When urologist Christopher Barbieri, M.D., Ph.D., on the faculty at Weill Cornell Medicine at New York Presbyterian, talks to his patients who are candidates for active surveillance, he tells them, “You’re more likely to get hit by a bus when you’re 100 years old than for this cancer to kill you.”

Let us digress for a moment and think of prostate cancer in the form of an animal.  The most aggressive cancer is like a bird; it grows quickly and is very likely to fly away from the prostate to other places in the body, making it more difficult to kill.  The least aggressive cancer moves like – well, something slow, a turtle, or a sloth.  And then there are men with the cancers in between – let’s think of them as rabbits — cancers that do need to be treated with surgery or radiation.

Indolent prostate cancer is the pet rock of cancers; it doesn’t do much, but the upside of that is that it doesn’t need to be treated, either. 

Important point:  Cancer may not stay indolent.  Or, from the initial biopsy and test results it might appear to be low-risk and or low-volume, but actually more cancer is there and the biopsy needle just missed it.   So, men who choose active surveillance may not stay on it forever if their cancer undergoes “grade reclassification” – if that is, you have another biopsy and it suggests that more cancer is present, or that it may not be so slothlike in personality.  So if you choose active surveillance, know that at some point, you may need to have surgery or radiation.   If you are an African American man, talk to your doctor about getting an MRI to make sure that you don’t have cancer that was missed on the biopsy.

Choosing active surveillance – remember the keyword is “active” – means that you will need to keep getting your cancer checked out.  You will need to get follow-up PSA tests, exams, and biopsies, maybe once a year, for many years.  If you are a young man, say age 50, and you could reasonably expect to live another 40 years, this could mean that you get your prostate stuck with needles many, many more times in your life.  (Not until you’re 90, but at least another 15 years or so.)  Biopsies have their own risks, which I’ve written about here.  You may not want to subject yourself to this.

restaurant manYou will also have to live your life knowing you have cancer.  Can you handle this?  Some men can’t.  Thinking about the cancer in there makes them anxious.  To them, it’s like a time bomb – when actually, it may not be a time bomb at all, but more of a clock just happily ticking away, not causing harm – and they end up having surgery or radiation just for the peace of mind.

On the other hand, if you can live with it — trusting that the follow-up monitoring will detect any change if it happens and that if you need to get treatment, you won’t miss that window of treatment when the cancer is still confined to the prostate, and you will have plenty of time to make that decision — then active surveillance may be a good option for you. 

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

 ©Janet Farrar Worthington

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Diagnosed with Prostate Cancer? Don’t Panic

You’ve Got Prostate Cancer. Now what?

You’ve had the PSA test – or more likely, several of them – plus the digital rectal exam, and one or both of these suggested that you needed a biopsy.  The biopsy was not fun, but you did it, and then you waited for a pathologist to look at the tiny, needle-sized cores of tissue removed from your prostate.  Maybe you managed to forget about it while you were waiting – maybe you feel perfectly healthy, and this all seemed surreal.  Or maybe you let some dark thoughts creep in, and you started thinking about cancer and remembering everyone you ever know who has had cancer and not done very well.  The waiting’s over now.  Your doctor has just given you the news:  there’s cancer in there.   What are you going to do?

The very first thing you should do is, don’t panic. 

christopher_barbieriIf you have cancer in your prostate, it didn’t just spring up like a mushroom.  It has been there for years, maybe even a decade, growing very slowly, taking a long time just to get big enough to be discovered.   “Even in a fairly aggressive form, prostate cancer grows slowly compared to other cancers,” says urologist and molecular biologist Christopher E. Barbieri, M.D., Ph.D., on the faculty Weill Cornell Medicine at New York Presbyterian.  I recently interviewed him for the Prostate Cancer Foundation’s website.

What this means for you is: brush the dark thoughts away.  Nobody wants to have cancer, but if you have to have it, there has never been a time of more hope.  There have never been better treatments.  There have never been so many men not dying of prostate cancer, and not having bad side effects from treatment. 

You are going to get through this. 

If your cancer was diagnosed through regular screening, that’s an extra reason to be upbeat:  Just a couple of decades ago, before the PSA test and regular screening became widespread, most men didn’t know they had prostate cancer until it was often too late.  Either it had gotten advanced enough to cause symptoms like back pain or urinary problems, or it was big enough for a doctor to feel it during a rectal exam.  Many men used to be diagnosed when cancer was no longer confined to the prostate and was more difficult to treat. 

That’s no longer the case.  Thanks to regular screening, most men are diagnosed at least five years earlier than they used to be.  Most men are diagnosed with cancer that is very curable.  In fact, many men are diagnosed with cancer that maybe shouldn’t even have been found – cancer that doctors call “incidental,” which means it’s just there, but it doesn’t do anything.  It just sits there in your prostate, just a few very slow-growing, not aggressive cancer cells, and you could have lived your whole life never knowing they were in there.  Many men die with prostate cancer, not of it.   

So the second thing you need to do – the first, remember, is do not panic – is figure out just what kind of prostate cancer you have. 

If you were diagnosed at a smaller medical center, doctor’s office, or hospital, it’s a good idea to have your biopsy results sent out to another pathologist at a large medical center, where they see a lot of men with prostate cancer, for a second opinion.  Prostate cancer can be tricky to interpret, and it’s a good idea to get a second opinion from somebody who specializes in looking at it – not breast cancer, not ovarian cancer, not colon cancer, just prostate cancer. 

The third thing:  Take your time. 

pexels-photo-53918Once you know what you’re dealing with, your first reaction should not be, “Oh, my God! I’ve got to get this out of here!” or other words to that effect.  Do not feel rushed to get treatment right away.  First of all, your body needs several weeks to heal from the biopsy.  Second, now is the time – for you to figure out which treatment is right for you. 

Remember, that cancer has been in there for a long time.  It’s not going to grow very much over the next few weeks; in fact, it may not grow at all.  If you and your doctor decide you need surgery or radiation to kill the cancer you then need to find the best place – it may be nearby, or in another city in your state, or even further away – for you to have this done.  It is far better to take a little while – not much time at all in the greater picture of your life – and make a decision that is right for you than to rush into treatment and later regret being so hasty. 

Do not despair.  Take heart, take a deep breath, and figure this thing out. You are not alone.  There are millions of us here in the “reluctant brotherhood” of prostate cancer (and plenty of sisters, too – wives, daughters, sisters, girlfriends, mothers – who have shared this journey).  Reach out to us.  We have been where you are now, and come through it.  You will, too.

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

 ©Janet Farrar Worthington

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