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Testosterone Replacement Does Not Raise Prostate Cancer Risk

Is your doctor squeamish about testosterone replacement?  Many are; in fact, to many doctors, the idea of testosterone replacement has ranked right up there with playing with fire. They worry that men will get burned – that increasing a man’s testosterone will make him more susceptible to prostate cancer. They worry about this because the mainstay of treatment for advanced prostate cancer is to do just the opposite – to shut down testosterone, and cut off the supply of male hormones to cancer cells.

But there’s good and surprising news: Boosting low testosterone doesn’t seem to raise the risk. In fact, it significantly reduces a man’s risk of getting aggressive prostate cancer.

Before we get carried away and say, “Extra testosterone for every man!” and run around tossing out gel patches, pills, and shots, we need to talk about what this actually means.

Let’s look at the study, recently published in the Journal of Clinical Oncology. In an international effort, scientists from New York University and Sweden analyzed the health records of more than 250,000 men on several health care registries in Sweden, including the National Prostate Cancer Register. There were 38,570 men who developed prostate cancer between 2009 and 2012, and 284 of them were on testosterone replacement therapy (TRT) before they were diagnosed. The investigators compared those men with 192,838 men who did not have prostate cancer, 1,378 of whom were on TRT.

What they found completely up-ended their hypothesis that giving replacement testosterone might be risky. “We found no relationship between the use of testosterone and the development of prostate cancer as a whole,” urologist Stacy Loeb, M.D., the study’s first author, told me when I interviewed her for the Prostate Cancer Foundation’s website, pcf.org. Even better, “we found that long-term use (more than a year) of TRT is associated with a much lower risk of aggressive cancer – a 50 percent lower risk.”

Testosterone actually lowers prostate cancer risk? Well, it does for the men who don’t have enough of it to start with. The men in Sweden who were on TRT, the investigators believe, actually need to be on it, and are prescribed it by their doctor. That’s not always the case in the U.S., where it’s common to see TV ads telling men that if they’re tired and have a low sex drive, they may have “Low T,” and offering prescription help.

So what we’re talking about here are men with below-normal testosterone who take medicine to get their testosterone level back up to normal range. “There are some interesting tie-ins to this,” says Loeb. Previous studies have shown higher rates of high-grade prostate cancer in men who don’t produce enough testosterone, “so it’s definitely a possibility that restoring the testosterone to the normal range could prevent this from happening. ”

In the study, researchers noticed an initial bump of men diagnosed with prostate cancer soon after they started TRT. However, these were low-risk cancers (easily treatable; in fact, many low-risk cancers can safely be treated with active surveillance), and Loeb believes the reason they were diagnosed at all was most likely because the men had received prostate cancer screening when they started the TRT.

How do you know if you have low testosterone? The symptoms, just as the TV ads claim, include fatigue, low libido, and decreasing muscle mass. “But a man should never just start taking a testosterone supplement just because he has those symptoms, because a lot of other diseases can mimic low testosterone,” notes Loeb. And if you have erectile dysfunction (ED): “You’re better off taking a medication such as Viagra, Levitra or Cialis. A lot of men come to the doctor thinking they want to be on testosterone. They’ve seen the direct-to-consumer advertising, and they just want it. But that doesn’t mean it’s the right solution for them.”

However, Loeb adds: “Don’t be afraid to supplement your testosterone if it’s low. There are certainly risks to having a low testosterone level for years; it can affect your cardiovascular system and your musculoskeletal health.” And this new study suggests that raising that testosterone level back up to where it should be may even reduce your risk of getting aggressive prostate cancer.

This research has raised new questions, including:

What about men with low testosterone who have been treated for prostate cancer and are presumably cured? Is it safe for them to go back on testosterone? “Our study did not include men who already had a diagnosis of prostate cancer. These men should be evaluated on a case-by-case basis,” says Loeb.

Why do low levels of testosterone lead to aggressive prostate cancer in some men? And could restoring normal levels of testosterone mitigate this risk? “We have a lot more work to do to understand the implications of these findings.”

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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Does ADT Raise Your Risk of Alzheimer’s?

Part Four of Four

It’s challenging enough that you need to be on androgen deprivation therapy (ADT) in the first place.   Now, in addition to prostate cancer, you have to worry about the risk of dementia?

Some studies have shown an increased risk for Alzheimer’s disease, and cognitive impairment and depression are known problems that can go along with ADT. We’ll come back to those in a moment.

There is some reassuring news: a new study, the largest of its kind, published in the Journal of Clinical Oncology, suggests that your risk for Alzheimer’s disease does not go up with ADT.   The study was led by Clement Joseph McDonald, M.D., of the National Institutes of Health. It involves a massive database: the medical records of men with advanced prostate cancer – more than 1.2 million of them, age 67 and older, enrolled in Medicare.

Between 2001 and 2014, 35 percent of these men were treated with ADT (either through drugs such as Lupron or with surgical castration). Of these men, about 9 percent developed Alzheimer’s disease, nearly 19 percent developed dementia, and about a third died without developing either condition.

Now, here’s where it gets a little complicated: the unadjusted rates for dementia in men who were on ADT were slightly higher than for the men not on ADT – nearly 39 percent compared to nearly 33 percent. But when McDonald and colleagues accounted for factors such as other cancer treatment, other health conditions, and age, they found that the risk of Alzheimer’s was not significantly higher in the men on ADT. In fact, it was even slightly lower, but this “possibly was attributable to the high death rate.” In fact, the average time of follow-up was about five and a half years.

If you’re reading this and you think, “Oh, no, they didn’t live very long, and that’s why they didn’t get dementia,” well, you may be right. But treatment for advanced cancer is getting better all the time, and it’s not clear from this study whether these men went on to have second-line treatment, such as abiraterone, enzalutamide, taxotere, or any of the immunotherapy drugs currently being tested in clinical trials across the country.

So take heart: New and better treatments are here, and what happened to these men does not define what’s going to happen to you.

But here’s where the grain of salt comes in: Some of these men did develop dementia. So even if it wasn’t technically Alzheimer’s, the name of the problem doesn’t really matter if you’re the one who’s got it. What do we make of this?

As we’ve discussed before, ADT can cause metabolic syndrome: it can raise your blood pressure, your blood sugar level, your cholesterol and triglycerides, and it’s very easy to gain weight – particularly right in the belly, which raises your risk for diabetes, heart attack, and stroke. You need to burn more calories than you’ve ever had to in your life just to lose a pound. That doesn’t mean it can’t be done – it can. You just have to work harder. But you can do this, and it helps if you don’t eat a lot of carbs.

If you are on ADT, you also need to do your best to help out your cardiovascular system with exercise. It doesn’t have to be anything more strenuous than walking; just keep that blood flowing and the heart pumping, and what’s good for the heart is good for the brain. Which means, you can help prevent cognitive damage by staying active. Many men with ADT also have temporary depression. This also is improved by exercise – but if you need it, medication can help these symptoms, 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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ADT and Cognitive Impairment

Part Three of Four

Does ADT cause cognitive impairment? This question seems simple, but really, it’s more like opening a medical can of worms. So let’s ask a different question. Do men on ADT get cognitive impairment? Yes, some do. But many don’t. It is hard to pin down definitive facts here – like, how many men get it? What’s the risk at one year, two years, five years, and ten years?

Nobody knows the exact statistics, and there are several reasons why.

  • There are probably many more men on ADT with cognitive impairment than we know about. But they don’t spend enough time with their doctors, at 5- and 10-minute follow-up visits to renew their Lupron prescription, for their mental status to be evaluated. Cognitive impairment doesn’t always show up in casual conversation.
  • Scientists looking to answer this question aren’t using standardized criteria. For example, does hormonal therapy mean only ADT, or ADT plus another drug, like enzalutamide? Also, are we talking about actual Alzheimer’s disease here, or just an inability to find the right word quickly on a crossword puzzle?

Well, what about men who are actually showing signs of cognitive impairment? That’s not much easier; there are still more questions:

  • Would they have gotten it anyway?
  • Did they start ADT with some risk factors for dementia already on board?
  • If they are showing signs of dementia, is it because when they got on ADT they stopped exercising, gained weight, and experienced depression – and could one of those those factors actually be the tipping point?

I recently interviewed medical oncologist Jonathan Simons, M.D., CEO of the Prostate Cancer Foundation (PCF), and medical oncologist Alicia Morgans, M.D., of Northwestern University, about ADT for the PCF’s website.  “We have reached a crossroads, and in some ways, it’s actually a sign of progress,” notes Simons. Long, long ago, heart disease wasn’t a big health problem – because people died of other things, like accidents and infections, and diseases that we now get routinely vaccinated for. Diabetes wasn’t a huge risk for many people; sugar wasn’t widely available, there was no such thing as soda, obesity was rare, and people were more physically active. Prostate cancer wasn’t that big a deal, either, because most men didn’t live long enough to get it.  “Not too long ago, men with metastatic cancer died within months or a few years of their diagnosis. Today, men with metastatic prostate cancer are living long enough to develop other problems, and doctors – who previously had just been focused on keeping these patients alive – are trying to figure out how best to keep them alive and well.”

What we have here is an issue of survivorship – living with metastatic prostate cancer, and dealing with the side effects and challenges of treatment.   Medical oncologist Alicia Morgans, M.D., M.P.H., of Northwestern University, is a pioneer in studying survivorship. Cognitive issues have not been much studied in prostate cancer, and scientists are playing catch-up. “It’s not fair for us just to look at the benefits of treatment anymore,” she says, “now that we are starting to understanding the risks better.”

One easy place to start is to make sure that all men who are put on ADT really need it.   Next, men on ADT need better follow-up to monitor their cognitive function.   Morgans believes cognitive impairment in men on ADT is “underreported, underappreciated, and underdiagnosed.” In a PCF-funded study, Morgans’ patients are taking brief neuropsychological tests; the tests look for changes in verbal memory, visual memory, attention, and executive function. She hopes to develop reliable tests that can be done online – tests that could be given to many more patients in clinical trials, so that investigators can get an idea of the scope of the problem.

Family and friends can help: Someone who is having cognitive impairment may not be aware of changes, or may not be able to articulate them well. But his family and friends can help bring worrisome symptoms to the doctor’s attention.

Layers of medication: One of Morgans’ patients, a 76-year-old man, had been doing fine on Lupron for years. But when his PSA started to rise, Morgans added abiraterone, and then enzalutamide. For this man, enzalutamide might have been the tipping point, “one thing on top of another thing, on top of another thing. He was experiencing confusion and forgetfulness,” she says. The man, a minister, was not able to write or deliver sermons anymore. “We decided, despite the fall in his PSA, to stop the enzalutamide.” Four weeks later, his cognitive function had improved, and “he continues to give sermons today.”

For this man, the key to cognitive issues seemed to be enzalutamide. For another man, it could be something different. It could be a different kind of domino effect – the higher risk of diabetes and cardiovascular disease, for instance; maybe these other health problems, in turn, affect the vitality of the brain. “There may be subclinical strokes or cerebrovascular disease that we don’t know about,” Morgans says.

Loss of estrogen? Morgans suspects that a change in cognitive function might also have something to do with a man’s estrogen levels. Women aren’t the only ones who make estrogen; men make it, too, at lower levels. But ADT causes men to have “very low levels of estrogens, lower than postmenopausal women have.”  In studies of women with breast cancer, she points out, “low estrogen levels on their own can be associated with cognitive decline. It’s not ‘chemo brain,’ it’s something different.”

Men with prostate cancer don’t need to have low estrogen levels in order for their cancer to be treated; it just happens as a byproduct. Normally, men need some level of testosterone in order to make estrogens. “Estrogen doesn’t have to fall for us to treat prostate cancer, but it does fall with the method we use – we know testosterone drops to a place it’s never been since puberty.” Would giving some type of estrogen along with the ADT be helpful? No one knows.

Depression is a risk factor for dementia; big changes in sleep habits can also be a risk factor. It may be that addressing each of these separately – with an antidepressant, with exercise, and with melatonin to help with sleeping – could help keep the brain working better.

What about changes in the way ADT is given? Intermittent therapy may be an option. This could mean giving ADT, stopping it for a few months, and then starting back up again. “When men go off ADT, their testosterone comes back, they feel better, think better, their executive function is better – their ability to do a crossword puzzle, or find a synonym, or find the word they’re searching for – and they feel more like themselves again.” Another approach, as investigator Samuel Denmeade is testing at Johns Hopkins, is “bipolar” hormonal therapy: alternating ADT with its polar opposite – high-dose testosterone.

Could “brain exercise” help? Maybe. Crossword puzzles and mind-challenging games may indeed act as mental push-ups and sit-ups, says Simons.

The ultimate goal for treatment, scientists and doctors agree, is to find a way around ADT altogether, or to change it somehow so that the prostate cancer is affected, but the brain is not. Until then, it’s up to doctors to use ADT wisely, only when it is medically appropriate. “Using hormonal therapy has to be more than just a reflex, like giving people penicillin for a head cold,” Simons states. “The PCF, in fact, is actively funding research for other ways to treat metastatic cancer that don’t involve hormones at all.”

It’s also up to you, too, to make sure you start ADT only if and when you need it. If you are at intermediate- to high-risk of recurrence, or if you have a rising PSA but no evidence of metastatic disease and your doctor wants to put you on ADT, get a second opinion. You may also be eligible for a clinical trial of a different kind of therapy that does not affect your hormones, including treatment for oligometastasis — SBRT radiation to a few spots of cancer in your bones, or surgery to remove cancer that is just in one lymph node.

If you do have metastatic disease, right now ADT is the standard of care, and it could put your cancer into remission for many years. There is a lot you can do to help mitigate the side effects – which, in turn, may help protect your brain.

———

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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ADT and Metabolic Syndrome

Part Two of Four

Metabolic syndrome includes an unholy cluster of bad things that can lead to a heart attack or stroke. Elevated blood pressure; unhealthy levels of blood sugar, cholesterol, and triglycerides; and abdominal fat – a big jelly donut of visceral fat, also known as “heart attack fat,” right around your belly, a cardiac spare tire. A big gut equals a bigger risk for diabetes, heart attack and stroke.  All of this is magnified with ADT, androgen deprivation therapy for prostate cancer.

Maybe you already have some of these risk factors; maybe you’ve already had a heart attack, or you’ve got diabetes. If you need ADT, you need it.

But hear these words: You will need to fight what it’s doing to do to the rest of your body, even as it saves you from your prostate cancer.

You will need to get mad at it. Work hard to take back your life – work doubly hard, because not only will it try to turn you into a tub of butter, but you might get mildly depressed. Your brain will tell you that you’re too tired to exercise. It’s deceiving you. You must not listen to it. Exercise anyway.

Here’s what you’re up against: Normally, if a man wants to lose a pound, he needs to burn 3,500 calories. A man on ADT who wants to lose that same pound needs to burn 4,500 calories. He’s slogging upstream with ankle weights. His metabolism is slower, his sugar metabolism is messed up, his blood pressure may be higher, and for many reasons, he probably feels like crap. Maybe he stops taking care of himself.   This is the worst thing he can do.

You need to be aware of this, because it might not be on your doctor’s radar.

Just as important, you need to enlist your family and friends, NOT ONLY to help push you to exercise and eat right – cut way down on the carbs and sugar, especially – but to tell you if you seem depressed, because depression might have snuck up on you, and you might not have noticed it.

I recently interviewed medical oncologist Jonathan Simons, M.D., CEO of the Prostate Cancer Foundation, and medical oncologist Alicia Morgans, M.D., of Northwestern University, about ADT for the Prostate Cancer Foundation’s website.

All of these things can be fought, both doctors say. However, “if you just go back to the urologist or oncologist for a 5-minute appointment and another Lupron shot, you are probably not getting the monitoring you need,” says Simons. Depression may not show up in a brief doctor’s visit. Even if the scale shows that you’ve put on weight, your doctor might say, “Well, that’s common with ADT.”

Years ago, when doctors first started using ADT, “men didn’t live that long,” Morgans notes. “Now, men are living for years or even decades on ADT, and if that stops working, there are other drugs that can help, and exciting new types of drugs showing amazing results for some men in clinical trials.” This is very good news; however, the downside is that doctors might just think, “hey, it’s great, he’s still alive and his PSA is not moving up.”

But we know that weight gain is not only a common side effect of ADT; it’s bad. It’s also something you can help prevent. You need to exercise, with cardio (walking, swimming, riding a bike, aerobics, jogging, etc.,) plus weights for strength. These can be light weights; you don’t need to turn into Arnold Schwarzenegger and bench-press a Volkswagon Beetle or anything like that. You just need to keep your muscles working. Exercise will help with depression, with the cardiac risks, and with the risk to your brain. As University of Colorado radiation oncologist E. David Crawford, M.D., recently put it, “What’s heart healthy is usually prostate-cancer healthy… I’ve got a number of (patients on ADT) who are in great shape and they’re tolerating [treatment] quite well. These are the people who are out there, who continue to lift weights, they continue to exercise, they watch their diet.”

The metabolic syndrome that ADT causes may be a major reason – nobody knows for certain yet – why some men who are on ADT have cognitive impairment.

Coming up next:  ADT and cognitive impairment.

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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ADT and Prostate Cancer: Who Really Needs It?

Part One of Four

The only people who really like androgen  deprivation therapy (also called ADT, or hormonal therapy) are the drug companies that make billions of dollars a year selling the drugs.   Doctors don’t like it, and men don’t like being on these drugs.  So why do it?   There are few specific situations when ADT therapy is the right thing to do. These are the most common:

* Intermediate-risk men who are given six months of ADT plus external-beam radiation;

 * High-risk men who are getting radiation therapy. This is a finite course of ADT, and this combination – two or three years of ADT plus external-beam radiation – has been proven to cure cancer in many men.

* Men with metastatic prostate cancer. ADT can make a big difference in these men, in relieving their symptoms and dramatically improving their quality of life. It can also extend life – some men have been on ADT for 20 years and are still going strong.

Who should not get ADT? Anybody else with prostate cancer. If you just have a rising PSA after radiation therapy or radical prostatectomy, that is not a good enough reason for a doctor to put you on ADT. If your doctor wants to put you on ADT to “shrink your prostate” before brachytherapy, that’s not a good enough reason.

ADT has never been shown to extend life if it’s given too soon, as opposed to taking it when you need it. Johns Hopkins urologist Patrick Walsh, M.D., with whom I have written several books on prostate cancer, has been saying this for many years.

Why not just start ADT? At least it’s doing something, rather than sitting around waiting for the cancer to spread. Well, that sounds good. Please refer to the previous paragraph, and read that first sentence again. Now, if you have a rising PSA, there are other things you can do that may help a lot. These include:

  • Salvage surgery or radiation, if your doctor thinks the cancer is still confined to the “prostate bed,” the area around the prostate.   (Note: In this case, if you get salvage radiation, your radiation oncologist may want to put you on a limited course of ADT, which is one of the two specific acceptable situations for ADT; see above.)
  • Immunotherapy; a vaccine such as Provenge, designed to boost your body’s ability to fight off the cancer.
  • Early chemotherapy.
  • A clinical trial testing a promising new drug.
  • Treatment for oligometastasis. Cancer may only be in a lymph node or in a few spots in the bone, and doctors are now treating this. It may still be possible to cure your cancer. I will be writing more about this in future posts.

Don’t get me wrong: I’m not hating on ADT. If you need it, you need it. But it’s not just like taking a vitamin supplement or getting a flu shot. There are serious side effects with long-term ADT – things that testosterone normally helps protect you from – including thinning of bones, loss of muscle mass, weight gain, loss of libido, hot flashes, mood changes, depression and the risk of cognitive impairment.

Coming up next:  ADT and metabolic syndrome, and how to fight it.

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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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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Prostate Cancer Treatment and Erectile Dysfunction

Take Back Your Sex Life! Here’s How to Make it Happen.  It’s the side effect that men fear most: Erectile dysfunction (ED) after surgery or radiation treatment for localized prostate cancer. As urologist Patrick Walsh, M.D., the great Johns Hopkins surgeon and my coauthor on several books about prostate cancer, always says: The first thing is to cure the cancer. Second is to preserve urinary continence. ED is third, because there are many ways to restore sexual function.

You deserve to be not only cancer-free, but to have all your parts in working order. So, if you’ve had a radical prostatectomy or radiation therapy for prostate cancer and you’re having some ED, take heart! This doesn’t mean that your sex life has to be over!

But a big part of this is up to you. If you’re having trouble and you don’t say anything, hoping for the best probably isn’t going to cut it. Ask your urologist for extra help. If you don’t get it, find another urologist.

I recently interviewed Trinity Bivalacqua, M.D., Ph.D., the R. Christian B. Evensen Professor of Urology and Oncology at Johns Hopkins, for the Prostate Cancer Foundation’s website (you can read more at pcf.org.) Here are some key points he wants you to know.

First: A lot of urologists don’t give their patients the most accurate picture of what to expect after prostate cancer treatment. There may be several reasons for this: Maybe they don’t want to admit that their results aren’t that good, or they don’t want to discourage patients from getting their prostate cancer treated by worrying them about their future sex life. We’ll get to some of that in a minute.

Second: Way too many men suffer in silence. These men – leaders at the office or in the community, respected, take-charge, tough guys – don’t ask for help. They push sex over to a quiet corner of their lives, and they’re miserable, because they assume that ED is a done deal. It’s their fate. Some things are just not meant to be, they sigh.

They give up.  They tell themselves that this is how it’s always going to be – partial erection, or no erection, forever.

Come on, men: This is rehab. If you had trouble walking after a car accident or a stroke, you would accept that it’s a step-by-step process to get you back on your feet. Maybe you’d start with a wheelchair, but graduate to a walker, and then a cane. You would understand this. It would make sense to you.

It’s the same thing with your penis. There are steps. You can escalate.

Don’t give up. This is practical stuff here. If your doctor is not telling you this, print the article and take it in for your next appointment. Ask for help. If you want this to happen, help make it happen. Don’t give up.

And partners: Give the guy a break. Have some empathy. Yes, it’s frustrating for you, and it will take a lot of patience and encouragement on your part, but keep your eye on the prize: long-term success. This man just beat cancer. With your help, he can get all of his life back. It’s not going to be this way forever. Recovery of erections after surgery can take a long time – even years – to return fully. In the meantime, there are many options here. Hang in there, people.   You’re not alone.

Rehabilitating Your Penis

Will your sex life be the same after surgery? The absolute honest answer is, probably not, or at least, not for a while. But the other absolute truth is just as important: You can have a good sex life after surgery.

It’s essential to know these two facts, because a lot of men don’t hear the whole truth from their doctor – or maybe they do hear it, but then focus on statistics for younger men who have never had erectile dysfunction (ED) and think the results will be the same for everybody. They won’t.

If you are in your sixties or older, have already experienced ED, and maybe you also have some other health issues, like diabetes or heart disease, then most likely you will have some ED after surgery. It happens after radiation, as well; the onset is more gradual, but the basic problem is the same – damage to the nerves and blood supply that control erection (see below).

“Erections are going to be altered from what you had before surgery,” says Bivalacqua. “Unfortunately, many doctors never provide this information; in fact, some men believe that if their erections before surgery are not as rigid as they would like, that a radical prostatectomy may actually improve them. This is definitely not the case. You may go on the Internet and find some doctor who says that 98 percent of his patients are continent and have excellent erections after surgery – but nowhere does that doctor tell you that he or she is just reporting on his youngest and best post-op cases, not on every single patient. I can’t tell you how many men come to see me and expect the same results. When they’re older and already have some trouble with ED, that’s just not going to happen.”

Bivalacqua cites a recent study in the Journal of the American Medical Association led by Harvard urologist Martin Sanda, M.D., based on data from 1,027 men with clinical stage T1 and T2 prostate cancer who had either radical prostatectomy or external-beam radiation therapy. “For a 50-year-old man with good sexual function before surgery, the probability of having good sexual function 24 months after surgery ranged from 21 to 70 percent, depending on their pre-surgery PSA and whether the nerve bundles (see below) were spared.” And for a man of any age with good sexual function before external-beam radiation therapy, “the probability of having good sexual function 24 months later ranged from 53 to 92 percent, depending on their PSA level and whether they received a short course of hormones along with their radiation therapy.”

Hold that thought.  We need to take a very brief detour and have a mini-crash course in prostate anatomy. On either side of the prostate – think of Mickey Mouse’s ears, except extremely tiny and hard to see – are two bundles of nerves.   They are called neurovascular bundles (that just means there are a bunch of nerves and blood vessels all clustered together). These nerve bundles were discovered by Pat Walsh, who invented the “nerve-sparing” radical prostatectomy.

Although these nerves are not in the penis itself, they are responsible for erection. They’re like junction boxes that control the wiring in a different room. Inside the penis are blood vessels; they’re like the plumbing. Basically, the erection happens when blood flows inside the penis – think of a water balloon filling up. If you have heart disease, and plaque in the arteries that can hamper blood flow, the penis (which depends on blood flow for erection) can be affected, too. This has nothing to do with the prostate, or prostate cancer, or surgery or radiation. This is just a problem you may already have.

In a nerve-sparing radical prostatectomy, if cancer is well confined within the prostate, your surgeon may be able to save one or both of those nerve bundles. You can have an erection with just one bundle. If you have both bundles removed, because your cancer is too close to that edge of the prostate, you can still have a sex life; you just will need some help with erections, and there are several options.

But first, back to your own situation: “If you have strong erections already and the nerves that control erections are spared during surgery, your chances of achieving a full recovery are excellent,” says Bivalacqua. But if, before prostate cancer treatment, you already had some mild ED, “this means that even if the nerves are spared, you will need some medication to help with erections after surgery.”

By medications, he means pills like Viagra, Cialis, Stendra, or Levitra.

Before we get into the specifics of sexual function after prostate cancer treatment, here’s one more very brief detour:

What kind of cancer do you have? If your doctor says you are a candidate for active surveillance, and you don’t have a family history of cancer and you are not of African descent, you may want to consider it, because it won’t affect your sex life or your urinary continence. However, it is not fun to get repeat biopsies, and if you are the kind of man who will constantly worry about having cancer – even if it seems unlikely to progress – this may not be for you.

If you are likely to choose surgery after a few years of active surveillance because you don’t want to live with the cancer and you want peace of mind, then please understand that your chances of recovery of potency are better sooner rather than later. Younger men who are potent before surgery do better, for the reasons discussed above.

Next, and this is huge: If you have cancer that is likely to progress beyond the prostate, you should get treatment now. Active surveillance is for a highly selected group of men with cancer that’s considered “safe.” It is completely different from not having surgery because you don’t want to have ED and hoping the cancer won’t spread. That’s actually more like denial than a good treatment strategy, and here’s why:

If you wait to have treatment, you might have more trouble than if you get treatment now. Not just because you’re more likely to recover your potency if you’re younger, but because if you don’t get treated for prostate cancer when you need it, and if that cancer progresses, you will lose much more than the ability to have an erection. If you have advanced cancer, the mainstay of treatment for metastatic disease is hormonal therapy, the shutdown of testosterone. One of the most difficult side effects of hormonal therapy is that it causes loss of sexual desire. (Note: Testosterone comes back if you stop taking the hormonal therapy, so a short course of hormonal therapy with radiation is different from taking it for the rest of your life.)

Help for ED after Prostate Surgery: The Basics

What’s the secret to having a good sex life after prostate cancer? It’s very simple, says Bivalacqua: “You use prescription erection pills. If they don’t work, you move to injectable medications. If they don’t work, you get a penile prosthesis. Also, having a loving and understanding partner always helps.” There’s also the vacuum erection device (VED).   It is not a first-line treatment for ED because there’s a high drop-out rate, Bivalacqua says. However, the VED can play a very important role in another aspect of surgical recovery: penile rehabilitation (see below).

First, the pills: “When one of my patients leaves the hospital after a radical prostatectomy, he takes home a prescription for Viagra,” says Bivalacqua. Does he take it every day, like a vitamin? No. Although some doctors prescribe the pills this way, it’s not what physicians call an “evidence-based” practice; that is, the medical literature doesn’t back it up conclusively.   Instead, Bivalacqua tells his patients to take it as needed. “It is very difficult for me to tell a man that he should spend $600 a month to take a daily erection drug, because the evidence of a quicker return of erections is just not there.” However, he adds, “taking a pill daily may provide a benefit, and a lot of prostate cancer patients want to take a proactive approach. If that’s the case, then I encourage them to go ahead.”   Pat Walsh gives his patients samples of different types of ED medications, because each one works a little differently, so his patients can find the one that’s best for them.

Don’t just take a pill once and give up if it doesn’t work.

Taking an ED pill can boost confidence as well as help with erections, but even so, the first try might be frustrating. “I tell men that it often takes three or four attempts with Viagra to have a true response that will allow penetrative sex.” This doesn’t usually occur within the first couple of months after surgery. “Usually men see the most meaningful recovery around 9 to 12 months after surgery,” Bivalacqua notes. Just to recap here: Don’t be discouraged if the first time after surgery is not that great. And don’t give up.

Hear these words: “The penis works. The blood supply to the penis is still good.” So basically, it’s like a car that is having trouble starting. What you may need is a jump-start to get it going. That doesn’t mean you will always need this. Your body is going to continue to recover. It just means that at least right now, you might need a little help.

Now, here’s a question Bivalacqua asks all of his patients a couple months after surgery, when they are healing and are no longer having any problems with urinary leakage. (Note: not every man has urine leakage after surgery, but some men do and it is usually temporary.) “How important is it to you to have penetrative sex?” If that is very important to the man and his partner, “then I ask how often he has tried Viagra over the last four weeks.” If the man has tried it multiple times with no success, “I recommend that he start injection therapy immediately.” Remember, the penis works. “By injecting a medication that will increase the blood flow to that area, the man has a very good chance to restore erections and get that important part of his and his partner’s life back.”

Injection therapy? You mean, sticking a needle in the penis? Well, yes. But it’s a tiny needle, and your doctor won’t just hand it to you and say, “Good luck, buddy.” You will be taught how to use it. “Injection therapy allows a man to have sexual intercourse again,” says Bivalacqua. Very important: “We know that the more blood flow there is throughout the penis following a nerve-sparing radical prostatectomy, either with a pill like Viagra or with an injection of a pharmacological agent, the better the chances of regaining erections.”

Bivalacqua explains: “If you don’t have enough blood flow within the penis after surgery, it becomes ischemic; it does not get the nutrients it needs to stay healthy.”

Let’s take a moment to think about rehabilitation – say, after a bad injury. Maybe a man needs to learn to walk again, or use his hands, or how to talk again. If that guy just sits around and hopes it will happen and gets frustrated when it doesn’t, you may agree that he’s not taking the approach most likely to guarantee success. To put it bluntly, your penis needs rehab, too: “By increasing the flow of oxygenated blood to the penis, whether it is from a pill or an injection, we are able to preserve the erectile bodies (these are chambers where blood flows to provide a rigid erection), so they will respond once those nerves start to work again.”

How injection therapy works: As its name suggests, Tri-mix is actually three drugs (papaverine, phentolamine, and prostaglandin E-1). “The specific formulation of these drugs is based on the type of erection achieved with test dosages in the doctor’s office,” says Bivalacqua. “We teach the patient how to self-inject,” and understandably, this may take some getting used to. “The medication is shot into the base of the penis with a small hypodermic syringe,” and it works pretty quickly – within five to 20 minutes. What happens is that the Tri-mix causes the smooth muscle tissue in the penis to relax; it also dilates the main arteries and allows blood to fill the penis. “The erection can last between 30 and 90 minutes, and it becomes more rigid with sexual stimulation.” However, it may not always disappear right away after orgasm. (Note: After prostatectomy, there is no ejaculation, because the organs that contribute fluid for semen are gone.)

How well does it work? Pretty well; the success rate is between 70 and 80 percent.   However, the main cause of failure is poor blood flow to the penis, Bivalacqua says. “Sometimes, although the shot produces an initial erection, it doesn’t last because the veins in the penis are damaged,” because of heart disease, diabetes, or other health problems, in addition to the surgery.

Each shot costs about $7, and even though it works, about half of men abandon it within a year. Bivalacqua speculates that one reason is that these men didn’t get good or detailed enough instruction for them to feel confident injecting themselves. Also, it may take two or three visits for an experienced urologist to determine the optimum combination and dosage of the medication.

The Vacuum Erection Device (VED) and penis-stretching: One fact about the penis: It needs activity. The nerves in those neurovascular bundles are also responsible for nighttime erections (in your sleep), and those “are responsible for penile health and strength.” Think of tiny push-ups happening in your sleep. After surgery – temporarily if one or both nerve bundles (the nerves to the penis) are spared – these erections don’t happen. If these bundles are damaged or removed during surgery, scar tissue can develop. When any part of the body is injured, a scar forms. This is because as it heals, tissue gets fibrosis (it hardens; this is the more rigid tissue that makes up a scar). There is extra collagen in there, and this contracts over time. This contraction can shrink the penis by as much as half an inch. Now, before you say, “That’s it! I’d rather have the cancer!” or make any hasty decisions, please read this next sentence: “The good news is that there is a way to prevent the loss of length in the penis: using a vacuum erection device,” Bivalacqua says.

Please note this important point: We’re focusing on stretching, not shrinking.

Briefly, the VED is what you might suspect; an actual vacuum. The device costs between $200 and $500, and is available from the pharmacy with a prescription. You place a clear plastic cylinder over the penis, and use either a manual or electrical pump to create negative air pressure (a vacuum). It takes about two minutes to achieve an erection; then you slip a flexible tension ring from the bottom of the cylinder around the base of the penis. This keeps the blood from flowing back out. “No matter what is specifically causing the erection, the vacuum causes the vessels in the penis to fill with blood, just as they would during a normal erection.” There’s a downside, though: “The big complaint of all men using the VED is that the penis becomes cold and semi-rigid, and this makes intercourse difficult.”

Granted, it may not be the best way for you to have sex. However, you may want to think of it more in the category of an exercise bike: It can help you get back in shape. A recent study from the Cleveland Clinic evaluated the early use of a VED after radical prostatectomy. There were 109 men in the study. “One group of 74 men used the VED at least twice a week, starting one month after surgery, for a total of nine months,” says Bivalacqua. “The second group of 35 men did not receive any erection treatment.” The study’s investigators found that “only about 23 percent of men who used the VED properly complained of decreased length and girth of the penis, compared with 85 percent in the group who did not use it as directed, twice weekly. And 63 percent of the men in the control group – who didn’t use a VED at all – reported a decrease in the length and girth of the penis. To sum up: “What the VED does is stretch the penis. It is this stretching that will prevent the penis from contracting, or shrinking, after surgery.”

If You Still Need Help

MUSE: Meh. There is another type of therapy, called MUSE. Bivalacqua doesn’t recommend it, but your doctor might talk to you about it, so here’s what it is: MUSE stands for “Medicated Urethral System for Erections.” Basically, you take a small plastic plunger, and use it to press a tiny pellet (about the size of a grain of rice) into the tip of the penis. When it dissolves, it triggers an erection. It can also burn. “Many men complain of a burning pain in the penis after inserting the pellet,” says Bivalacqua.   Also, “the erection that you get is soft; it is not very rigid.” And, just as with the Tri-mix used in injection therapy , your urologist will need to determine the right dosage for you. “Some men may need double or triple the standard dose, but other men are so sensitive to the medication that they have actually fainted with the highest test dose.” Compared to an injection, “MUSE is nowhere near as effective.”

Penile Prosthesis

Instead, if pills or injections are not a good long-term solution, Bivalacqua recommends a penile prosthesis. “The device is just phenomenal,” he says. “Pills like Viagra are popular, because they’re easy to take, and when they work, they’re great. But the next most popular option is the penile prosthesis, and it works as advertised 100 percent of the time.”

It also looks 100 percent natural. It’s not some cyborg penis. For all practical purposes, it is your actual penis – just more reliable.

A penile prosthesis is an implant. It requires surgery to put it in. The procedure takes about an hour, and although it can be done on an outpatient basis, many urologists have their patients stay overnight.

How it works: Hydraulics. “The device is made up of two extremely compact, hollow cylinders,” explains Bivalacqua. These come in a variety of widths and lengths. “A small container that holds fluid is inserted in the lower part of the abdomen, and a pump is implanted in the scrotum. “ To get an erection, you squeeze the pump several times. This sends fluid from the reservoir to the inflatable cylinders, which then expand, making the penis get longer and wider – just as in a regular erection. Afterward, you squeeze a valve at the top of the pump, the fluid returns to the container in the abdomen, and the erection goes away. “The device is extremely durable and reliable,” says Bivalacqua.

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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