Prostate Talk: To limit the poking and prodding

OK, adult sons, can I have your attention please?   When you were a teenager, your father might have had The Talk with you. Remember how awkward that was for both of you?  Now it’s your turn to stammer out to him some important information, to have A Talk with him, about his prostate and what to do about the damn thing.  June is Men’s Health Month, and with Father’s Day coming up on Sunday, there’s no better time for The Talk.

You can see a short video of advice by Dr. Harry Fisch, a Board-certified urologist at New York Presbyterian Hospital/Weill Medical College of Cornell University, or read excerpts from the interview below.

Q:  What is the best way for men to educate themselves about prostate treatment?

A: 4Kscore.com is a website about the most modern and sophisticated test for the aggressive form of prostate cancer—that’s prostate cancer that can kill you.

A lot of times men are getting prostate biopsies that are unnecessary.  Three out of four men, when they get a biopsy, don’t have cancer.  We want to limit the poking and prodding that men get.  The more sophisticated 4K test can decrease the number of unnecessary biopsies and gauge the risk of having aggressive cancer.  That’s what the 4K score test is all about.

Q:  How would you advise adult sons to talk to their fathers about prostate cancer?

A:  We don’t want denial.  Men are in denial, denial, denial about their health.  Men who are older tend to not want to go to the doctor. and are more reticent to really discuss their health.  Young men can talk to their parents, and say, “Look,  I’m doing it.  It’s my turn to teach you about proper health.”  Young men are more attuned to information.  It’s the Information Age on the Web.  Get that information from the Web. Show it to your father, and your mother too, as well, so they can get as much information as you got.   Make them more savvy.

Thanks to Dr. Fisch, and Mike Bako and Alex Cole of D.S. Simon Media for organizing and producing the interview.  Read another story on prostate cancer decision-making.

Active surveillance for prostate cancer: The trader won the bet

Mike Steskal, a commodities trader who lives and works just outside Philadelphia, is 55 and was told last summer that he had prostate cancer after his doctor ordered a blood test for flu-like symptoms that happened to include a PSA test.  The PSA test looks for a protein linked to prostate cancers.  His PSA level was slightly elevated, which led to more tests, including a biopsy that showed a Gleason 6 cancer.  

He spent months seeing different doctors, most of whom recommended aggressive treatment because he is so young.  He also researched prostate cancer on the Internet and talked to men who had gone through various treatments.  Finally he chose active surveillance.

As part of the surveillance, he had two more PSA tests.  They came back with levels so low that no one would ever have suspected prostate cancer.  His higher level last summer was probably due to an infection, which can cause PSA levels to rise.  

“It was pure chance” that he got a prostate cancer diagnosis, Mr. Steskal said.  “That’s another thing that went into my decision.”  

Dr. Alan J. Wein, the Chief of Urology at the Perelman School of Medicine, advocates active surveillance for most men with low-risk cancers.  But he emphasizes that they should have a second biopsy within a year, followed by regular biopsies every year or two and regular PSA tests.  

“I tell patients, ‘This is a bet’”, he said. “You are betting that the disease is not going to progress, or if it progresses, you will be able to tell before it progresses to a situation where it less treatable.  You enhance the chances of winning the bet by doing a confirmatory biopsy.”

Ken’s comment:  The false positive PSA test led to a scary misdiagnosis, but Mike was wise to carefully consider the alternative to surgery.  

Thanks to Gina Kolata of the New York Times for the source story on May 24, “The Latest Trend in How to Treat Prostate Cancer:  Don’t.”  Read another story about decision-making on prostate cancer.

Prostate cancer decision-making on treatment: Would you cut off your left foot?

Paul VanDevelder, a middle-aged journalist and father, learned five years ago that his PSA (prostate specific antigen) test showed a sudden spike in his PSA level, making him feel panicked. A doctor friend calmed him and had him learn a lot more. Paul learned that for 88% of men with elevated PSAs, the results were a false positive.

The prominent Dartmouth Medical School researcher, Dr. H. Gilbert Welch, explains the odd truth: "The presumption often is that anyone who has had cancer detected has survived because of the test, but that's not true. In fact, and I hate to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test." Indeed, the U.S. Preventive Services Task Force formally recommended in October 2011 that doctors stop using the PSA blood test to screen healthy men for prostate cancer.

Paul will get retested in a year, and will think carefully before any prostate surgery. He explains his decision this way to his urologist: "If your doctor told you that an asymptomatic, non-life-threatening tumor was growing on the instep of your left foot, would you cut your foot off?"

Advice to men with elevated PSA levels: Think carefully before deciding on prostate surgery.

Read about another journalist's decision on prostate cancer. Thanks to Paul for sharing his story in today's Los Angeles Times, where the full article can be found.

A lot of hurdles to jump: Do Not Resuscitate Orders

A story by healthcare blogger Patricia Walling:

A man I knew wrote a Do Not Resuscitate ["DNR"] order in his 80s, before a hip replacement. That's a form you can fill out with a physician's signature to ensure that you are not resuscitated against your will after your heart or breathing stops. In the order, he included a lot of hurdles to jump before the plug could be pulled.

Years later, when his physical and mental health began to deteriorate rapidly in his early 90s, things became chaotic and stressful both for him and his children. At that point, he was dying of prostate cancer and just wanted them to let him die. Unfortunately, he had neglected the critical step of reviewing the DNR order every five years. The DNR order he had written in his 80s did not address many of the issues that became critically important in the final months of his life.

Recently a movement has begun to rename these forms "AND" (Allowing Natural Death) to emphasize through medical coding that the doctor is allowing death, rather than withholding care somehow. Having a DNR can be handy if you have been suffering from a disease for a long time, want to avoid the violence of CPR at death (which can often break ribs and other bones, especially in the elderly), or just want to be allowed to die at home rather than in a hospital. Numerous studies have found that end of life care tends to be prolonged needlessly, inflicting pain on the patient and imposing financial and emotional burdens on both patient and family, and a DNR/AND can help to alleviate those issues.

Patricia Walling's advice: Make sure to review it in detail with your doctor, appoint someone as a health care proxy, and don't forget that sometimes your wishes may change.

They regarded me as a rare pelt: Prostate cancer treatment

Dana Jennings's story:
I have prostate cancer, but it sometimes seems as if…the cold intent of many people was to translate me into an abstraction, to deny my damaged and tiresome flesh-and-bloodness.

My insurer did not want to hear that my radical open prostatectomy last July would demand a higher level of care because previous abdominal surgery had created a tortuous internal topography of scar tissue and adhesions. My insurer, despite the insight and strong protests of my doctors, kept insisting that any knife would do. Was Sweeney Todd available?

And some doctors I spoke with before my surgery – not my current team at the Cancer Institute of New Jersey – seemed to regard me as a rare pelt, a fascinating wrinkle in their volume business in prostates.

Cancer is a crucible in which we patients are somehow, we hope, reborn. It's a rite of passage as resonant as any other – a graduation, a baptism, a wedding – and should be treated that way. Some days, maybe because I'm still undergoing treatment, I don't want to hear about another stat, another study, another hare-brained cure. How about a smile, a kind word, and a hug?

The bewilderment, shame and fear often stun men into a passive and depressed silence. Nurses and doctors say that many men barely speak during treatment and office visits, letting their wives, partners or children do the talking. They are quiet waiting room wraiths, perfecting their thousand-yard stares. And if they speak, it's in murmurs, as if cancer required whispers. No one scratches you behind the ears and says "Good boy" for being mute.

Because I had surgery at a teaching hospital, I woke up each morning to the rustle and jostle of a gang of residents. Young crows with bright and clever eyes, they flapped into my room – almost like Keystone Kops in white coats – to take a poke at the old crow.

I don't want to be too tough on them, because they're only kids, and they have so much to learn in such a short time. But to most of them, I suspect, I was just a case, one of each morning's many medical exhibits.

I preferred the humane, morphine-woozy middle-of-the-night conversations with the aides who took care of me. The guy who talked about superhero movies after checking out the Iron Man figurine my sons had given me. And the guy who, as he gently drained my ileostomy pouch – not related to my cancer – told me how he'd had to wear a temporary pouch after he'd been shot when he was young and stupid.

Dana's Advice: To keep from being reduced to a cipher, a mere "case," you need to be conscious and verbal. As a patient, when you don't speak, when you try to take on the cool and detached manner of a doctor, all you become is "meat," quiet meat.

Read a story about compassionate doctors.

Thanks to Dana Jennings for his source article in the December 16 issue of the New York Times.

I've done a lot: A prostate cancer patient's choice

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment—incontinence and impotence---he chose what oncologists call "watchful waiting." For 12 years, Forbes was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Forbes said he knew could not cure him but might slow the cancer's progress and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.

"I took that kind of hard," said Forbes, an associate professor of media studies at Queens College. "I always thought I would live to 90, but I guess now I won't."

He just started radiation to the brain, perhaps with infusions of an experimental drug afterward. "I'll try chemo for six months, but if it gets too uncomfortable and inconvenient….,” he said, trailing off. "Having lived 80 years, I've done a lot. I don't have a reason to think I've been badly treated by life."

Forbes seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Forbes say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

Advice: Make your own choice. Live life on your own terms.

Read another story about a cancer patient’s attitudes toward the illness.

Thanks to Jane Brody for the source article in the Aug. 18 issue of the New York Times.

They're printing money: HIFU prostate cancer care

Some weekends, more than a dozen American men wait at beachfront hotels, anxious for their turns in the treatment room at a small private hospital in Puerto Vallarta, Mexico. They are medical tourists with prostate cancer, waiting for the latest therapy, high-intensity focused ultrasound (HIFU). It attacks the cancerous tissue by heating the prostate to temperatures near boiling, rather than using surgery or radiation.

But its long-term effects, and effectiveness, are unknown. And US HIFU, the company that promotes it, is attracting attention for its aggressive recruiting of doctors. "The people doing the treatments, they're just printing money," says Dr. Thomas Gardner. Though the urologist at Indiana University School of Medicine is enthusiastic about its potential, he adds, "Anytime anyone's printing money, doing what's right for the patient gets a little blurry."

"The US HIFU web site makes it all sound rosy; they give you none of the side effects and none of the bad results," said Fred Gillick, a Park Ridge, Illinois real estate executive who received the treatment in April 2006.

He says the procedure left him impotent and in need of a catheter at all times. Worse yet, the treatment did not eliminate his cancer. "Guys, there's a reason HIFU isn't approved here [in the U.S.]," he wrote.

Advice to men looking into prostate cancer treatment: Research all your options aggressively.

Browse for similar stories in our index at the very bottom of this page, or read a prostate cancer screening story.

Thanks to Stephanie Saul for the source story in the Jan. 18 issue of the NY Times.