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Prostate cancer: Now what?

You’ve gotten a PSA test result that may indicate prostate cancer. Or, more daunting yet, you’ve been diagnosed with it. What’s your next step?

If you’ve read my Healthy Manager column, you know that I’m a survivor of this process. I am not someone who sleeps on a bed of nails. If I can get through it, you can, too. It will be more of a psychological journey than anything else. And, I hope it will bring you many years of good health. 

If you’re like I was, you’ve developed something of an obsession with prostate cancer and the important decisions you must make about treatment. Maybe I can save you a few hours of Internet searches and offer suggestions on sorting out the medical advice.

The dreaded biopsy

A spike in PSA levels only means you might have cancer. The next step will be a biopsy and even that has about a 15% chance of finding cancer. It involves needles, where the sun doesn’t shine. Small tissue samples are needed to find out if prostate cells are malignant. In reality, the so-called transrectal ultrasound and needle biopsy is a bit like visiting a badly misdirected dentist. Urologists have finally caught up with the dental profession and most use a topical anesthetic and a shot of lidocaine to numb things up. Make sure yours does. It’s not entirely painless, but most of the rapid-fire needle samples felt to me like a rubber band snap. I’ve had three biopsies and went back to work after one morning session with barely noticeable discomfort when the lidocaine wore off. You’re likely to have blood in urine and perhaps in semen afterwards. For me, and for most men, those side effects weren’t painful – just part of your psychological journey. 

Here is a technical paper on the biopsy from a urologist’s point of view.

After my first two biopsies, a nurse called a few days later with good news. The lab test was negative. After the third, it was my urologist on the line, and I knew the news wouldn’t be as good. During the biopsy, my doctor told me he couldn’t see any tumor with ultrasound. But the lab test showed that 5% of the sampled prostate cells were cancerous. That likely meant the biopsy had caught the disease early and it hadn’t spread. But he scheduled a bone scan to make sure. I would see him the next week to get the scan results and discuss my options.

The grim researcher

Feigning calmness, my wife and I drove out to my urologist’s suburban medical clinic the morning of September 27, 2011, for my consultation. I expected to meet in my doctor’s office. Instead, we waited in a small, spare examining room until he showed up wearing surgical scrubs.  He told me the bone scan showed I had a small amount of arthritis. I was still holding my breath. And no cancer in the bones. Had there been, we would have talked about ways to extend my life, not possible cures. Relieved, I spent the next 45 minutes taking notes as he laid out treatment options. 

He outlined three basic ones:

  • Watchful waiting, which make more sense if you’re older (I’m 64) or if you’re in poor health. 
  • Radiation. There are two basic types: using a beam of radiation from different locations to target the cancer, or implanting radioactive seeds in the prostate. 
  • Surgery. Again, there two main types: Open prostatectomy which involves removing the prostate after making an incision in your lower abdomen or laparoscopic, which uses 4 to 6 smaller incisions and is sometimes done robotically.

Here is an excellent introduction to treatment choices can be found on the National Cancer Institute website.

Reputable websites like that one are neutral about the best treatment. 

My doctor wasn’t. He was blunt about the pros and cons of each option but favored open surgery. He also encouraged me to get a second opinion. 

He specializes in nerve-sparing open surgery (or retropubic prostatectomy).  Most men do choose surgery. It does involve two weeks using a catheter and 6 to 12 weeks of incontinence. And there’s about a 1-in-25 risk that you’ll need a transfusion due to blood loss during surgery. Even with nerve-sparing surgery, only about half of men achieve normal erections later – and that can take three months to two years. 

Other treatments sound less invasive and damaging at first. They may not be. 

Radiation treatment damages some tissue, sometimes the bladder or rectum. It, too, can cause impotence and incontinence. And because the prostate isn’t removed, it’s harder to monitor possible return of the cancer. The odds of the cancer returning are also slightly higher.

Other urologists in his clinic do the newer laparoscopic, robotic surgery. Even though the incisions for this surgery are smaller, the operation is not less invasive than open surgery. Unlike open surgery, it requires going into the body cavity and cutting through the peritoneum. That brings a higher risk of complications, such as damaging the intestine or rectum. You will also be under anesthesia longer. The survival rate is good, about 90% after 10 years. But it’s no better than with open surgery. The equipment and computer are expensive, as is their maintenance, so hospitals and clinics that have it are under pressure to use it.

“It’s all about marketing. Medicine shouldn’t be about marketing,” my urologist said. “Just because something sounds cool doesn’t mean it’s better.”

There was no pressure. I could take my medical file and get another opinion. And I could take three months to decide what to do without altering my chances of long-term survival—thanks to the fact that prostate cancer is one of the slowest growing cancers. 

I liked my doctor’s bluntness. I hardly doubted the diagnosis. But I double-checked his recommendations by calling a professor of urologic oncology in Detroit. I met him when his daughter and ours shared an apartment when both were in law school in Chicago. My professor acquaintance agreed with nearly everything my urologist said, including skepticism about supposedly less invasive laparoscopic surgery. The survival rate at five years after treatment differs little between radiation and surgery, he said, but at 10 years it drops to 80% for radiation versus 90% for surgery. And he agreed that the delicate nerve-sparing operation is successful only about half of the time. Scar tissue can damage the nerves even if they’re spared. 

That pretty much confirmed my choice for surgery over radiation. Next, I talked to several other men who have been through prostate cancer surgery. One had the laparoscopic, robotic surgery at Mayo Clinic and was very pleased with the results. Another had the same type of surgery in my city and had to have a second surgery on his bladder to end his incontinence. He still can’t achieve an erection. A third had open surgery. Having a catheter in wasn’t painful he said. He, too, remains impotent, but the joy of having grandchildren outweighs that change in his life. I won’t betray the privacy of any of these men. But I want to publicly thank them for their frankness. 

At this point, I had decided on the open surgery. My last decision was whether to stick with my urologist or find another to do the surgery. This was the most difficult choice, not because I had any real doubts about his surgical skills. He has done more than 2,000 of the operations. But how do you verify if a surgeon is among the best? My friend in Detroit wasn’t much help, suggesting that I Google him. Instead, I tried old-fashioned networking. We asked friends who are pharmacists working for a local hospital. They hadn’t heard any complaints. The father of my son’s college roommate is a surgeon who knows my urologist. He, too, vouched for him. Then a former employee of my company volunteered an excellent urologist I should consider. It turned out to be my own urologist. I picked up the phone and scheduled my surgery for November 16, 2011.

To maintain some sense of control over this whole process, I tried to train for the surgery. I worked sit-ups into my normal regimen of biking, running and swimming. At the suggestion of one cancer survivor, I did Kegel exercises before the surgery, hoping it would speed the recovery of bladder control afterwards.

I was fortunate that I was able to have a spinal block and sedative instead of general anesthesia for the surgery. I was surprised at how quickly I regained strength after surgery, and at the relative lack of pain. I did use strong anti-inflammatory painkillers while in the hospital. The first afternoon at home I took two Vicodin pills. I never needed them to sleep. In some ways, my two weeks of recuperation at home was one of the best vacations I’ve had – more relaxing than most, and rewarded by the support of family, friends, and coworkers. Even in the midst of that process, I felt blessed.

One criticism I have of my own medical process was the sketchy information sheet I was given when I left the hospital. I was told to call the nurse if I had questions. And I did when certain parts of my body seemed to be developing purplish Elephantiasis. It wasn’t painful, just unsettling. And I had to wait a couple of days before going outside for walks, not wanting to move down the sidewalk looking like a duck. I suppose my doctor was operating on the theory that too much information might worry the patient. Again, if you want get into more details, this Duke University website describes the recovery process accurately.

My recovery experience has been similar, though not exactly the same. 

My impression from hours of research before and after the surgery is that the key to a good outcome is your own health before hand and the skill and experience of your doctor, no matter what type of procedure you choose. 

You have probably read press reports about this entire process—PSA testing, biopsies, and even treatment – being unnecessary. Because the cancer is normally slow growing, you’re likely to die of something else. As the British urology profession website, 4urology.org, puts it:

“…to save one man from prostate cancer death, 1,410 men need to be screened and 48 men need to be treated.”

The problem, which that website admits, is that urology still can’t predict with accuracy, who will have an aggressive form of cancer that will kill you. In essence, if you decide to opt for “watchful waiting” and do nothing, you’re playing a game of Russian roulette with a 48-chamber revolver and one bullet. 

However, if you have a family history of prostate cancer, you may be adding more bullets to the chamber. If you’re in a higher risk occupation (farming is one) you might be adding another bullet, or part of one at least.  Most urologists are convinced that screening has saved many lives, far more than my Russian roulette analogy suggests. 

Between 1994 and 2004, prostate cancer deaths fell by 40% in the United States, according to Johns Hopkins University. Its urologists are very critical of the recent government task force that advocates less PSA screening for prostate cancer. The screening and treatments have saved lives. If you have any doubts about screening and treatment, this piece from the Johns Hopkins Medicine website will dispel them.

Good luck! 

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