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.

More of this story and much more about prostate cancer are on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” The PCF is funding the research that is going to cure this disease, and they have a new movement called MANy Versus Cancer that aims to crowd-fund the cure, and also empower men to find out their risks and determine the best treatment. 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 for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington

Regular disclaimer: This is a blog. It is not an encyclopedia article or a research paper published in a peer-reviewed journal. If a relevant publication is involved in the story, I mention it. Otherwise, don’t look for a lot of citations, especially if I’m quoting from a medical professional.

 

 

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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?”

More of this story and much more about prostate cancer are on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” The PCF is funding the research that is going to cure this disease, and they have a new movement called MANy Versus Cancer that aims to crowd-fund the cure, and also empower men to find out their risks and determine the best treatment. 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 for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington

Regular disclaimer: This is a blog. It is not an encyclopedia article or a research paper published in a peer-reviewed journal. If a relevant publication is involved in the story, I mention it. Otherwise, don’t look for a lot of citations, especially if I’m quoting from a medical professional.

 

 

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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.

More of this story and much more about prostate cancer are on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” The PCF is funding the research that is going to cure this disease, and they have a new movement called MANy Versus Cancer that aims to empower men to find out their risks and determine the best treatment. 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 prostate cancer runs in your family, you need to be screened for the disease. Many doctors don’t do this, so it’s up to you to ask for it.

 ©Janet Farrar Worthington

Regular disclaimer: This is a blog. It is not an encyclopedia article or a research paper published in a peer-reviewed journal. If a relevant publication is involved in the story, I mention it. Otherwise, don’t look for a lot of citations, especially if I’m quoting from a medical professional.

 

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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

Policy Change on PSA Screening: A Step Back in the Right Direction

American men need a baseline PSA test and rectal exam to check for prostate cancer in their forties, and then they need follow-up screening at regular intervals – maybe every five years, if the PSA number is low and nothing feels abnormal in the exam, or maybe more often, depending on the number. Men who are at higher risk – men with a family history of prostate cancer and other forms of cancer, and African American men – need to start screening earlier, ideally at age 40.

Have you been screened yet? If not, why not? Read more

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Healthy and Over 75? Keep Getting Screened for Prostate Cancer

We are living longer, and 75 is not the ripe old age it used to be.  But it’s a cutoff age for PSA screening – and this is missing cancer in men who really need to be treated, say Brady investigators.  “There is increasing evidence that this age-based approach is significantly flawed,” says Johns Hopkins urologist Patrick C. Walsh, M.D.  Walsh and I have written several books on prostate cancer, and this new information is being added to the upcoming 4th edition of our book, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, which we’re writing now.

 doctor medicineWalsh is the senior author of a recent Johns Hopkins study that looked at high-risk prostate cancer in older men.  The study’s interdisciplinary group of investigators also includes first authors Jeffrey Tosoian and  Ridwan Alam, and Carol Gergis; Amol Narang, Noura Radwan, Scott Robertson, Todd McNutt, Ashley Ross, Danny Song, Theodore Deweese, and Phuoc Tran.   

The U.S. Preventive Services Task Force recommends against screening for men over 75.  “There’s no question that there has been overtreatment of prostate cancer,” says urologist Tosoian. “However, that is getting better; more men are taking part in active surveillance programs, and we are much better at interpreting PSA and other biomarkers to rule out aggressive disease.”

But PSA can’t be interpreted if a man doesn’t get his PSA tested.  Population studies have shown that “men diagnosed at 75 years or older account for 48 percent of metastatic cancers and 53 percent of prostate cancer deaths, despite representing only 26 percent of the overall population,” says Tran, clinical director of Radiation Oncology and Molecular Radiation Sciences at Hopkins.  

Why are older men more likely to die from prostate cancer?  To find out, the team studied 274 men over age 75 who underwent radiation therapy for prostate cancer. “We found that men who underwent PSA testing were significantly less likely to be diagnosed with high-risk prostate cancer, and that men with either no PSA testing or incomplete testing (either a change in PSA was not followed up, or a biopsy was not performed when it was indicated); had more than a three-fold higher risk of having high-risk disease at diagnosis, when adjusted for other clinical risk factors,” says Tran.

Although this was a small study and more research is needed, Walsh says, “we believe that PSA screening should be considered in very healthy older men.”

©Janet Farrar Worthington

Regular disclaimer: This is a blog. It is not an encyclopedia article or a research paper published in a peer-reviewed journal. If a relevant publication is involved in the story, I mention it. Otherwise, don’t look for a lot of citations, especially if I’m quoting from a medical professional.

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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.

More of this story and much more about prostate cancer are on the Prostate Cancer Foundation’s website, pcf.org.  The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  The PCF is funding the research that is going to cure this disease, and they have a new movement called MANy Versus Cancer that aims to empower men to find out their risks and determine the best treatment.  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 prostate cancer runs in your family, you need to be screened for the disease.  Many doctors don’t do this, so it’s up to you to ask for it.

 

©Janet Farrar Worthington

Regular disclaimer: This is a blog. It is not an encyclopedia article or a research paper published in a peer-reviewed journal. If a relevant publication is involved in the story, I mention it. Otherwise, don’t look for a lot of citations, especially if I’m quoting from a medical professional.