Second Opinions Not Always Enough

Prostate cancer misdiagnosis a reminder to explore every avenue before surgery.

November 16, 2010, 11:46 AM

Nov. 19, 2010— -- I was five days from surgery to remove a cancerous prostate that wasn't. Five days from the sobering risk of side effects that have rendered thousands of men incontinent or impotent, or both.

But the thought of possibly losing my Mojo paled in comparison with the fear of prostate cancer that can skip to the lymph nodes, bone marrow or Lord knows where if not irradiated or excised. I opted for the latter after two pathologist reports concluded that I was host to what can best be described as cancer bordering on intermediate risk.

I met the first report at the urologist's office Sept. 14, after a routine prostate-specific antigen (PSA) blood test discovered that the level of enzyme given off by my prostate had jumped into red-flag territory. A subsequent biopsy, in which a needle was inserted into my walnut-sized prostate in 12 different places to take tiny samples, confirmed my worst fears.

I hemmed and hawed for a few days, talked to a couple of people who had first-hand experience, prayed with my wife, Beverly, and doubled back to my primary care physician of 21 years, whom I trust impeccably. He agreed with the urologist's recommendation to operate, reasoning that I have too many years ahead of me to risk letting any cancer lurk about.

The next hurdle was to confirm that no cancer had spread beyond the prostate. The pelvic, stomach and full-body bone scans came back negative, so the solution seemed obvious to me: Out comes the prostate, out comes the cancer. The other treatment options of radiation or "active surveillance" were both unappealing because, perhaps irrationally, I just wanted it over and done with.

We scheduled the radical prostatectomy for Oct. 13 at a reputable New York hospital where the pathology department had confirmed the initial diagnosis performed by the urologist's outside lab. Two analyses, two findings of cancer.

But I was also deep into a new book by then on the subject: "Invasion of the Prostate Snatchers," subtitled, "No More Unnecessary Biopsies, Radical Treatment or Loss of Sexual Potency," by Dr. Mark Scholz and Ralph Blum.

No Objections to a Third Opinion

It's a powerful and empowering script on how to manage a course of action for an illness that sneaks up on more than 200,000 men annually, resulting in death for about 32,000 of them. The authors make a plausible argument that urologists are as reflexively quick to recommend surgery as patients are to succumb to the scalpel.

I finished the book still more or less confident that surgery was the best option for a man of my age, as suggested by my urologist, who said more than once that he wanted me to be comfortable with the decision. I appreciated that.

Among the book's recommendations that resonated loudest was the one to have my biopsy samples sent to a world-class, cancer research facility. OK, I'll confess that I gave in to sentimentalism and symbolism, choosing Johns Hopkins in Baltimore mostly because I was born at the hospital 52 years ago and grew up across town. Many locals treat Hopkins with church-like reverence and, while short of that for me, it remains my benchmark for medical research and health care.

And best of all was the simple online access to a printable form that gets the process started. No need to have a hospital contact or doctor's name; no need for me to leave New York City.

My urologist's assistant, without batting an eye, even volunteered to track down the biopsy samples and send them to Baltimore for what was to be a third analysis. I appreciated that, too, as I grasped for one final way out.

But I had already made enough peace with the surgical treatment that I trudged over to the New York hospital for pre-operation screening.

I also met with my manager and a human resources rep to explain that I would be out of work for two to three weeks, at least. I had their unwavering support. I had even bought the absorbent underwear, antibiotics and painkillers I would need to help ease the recovery.

Then, on the Friday afternoon before Wednesday's scheduled surgery, that same assistant left me a message at work to call her at the urologist's office ASAP. I returned the call and the doctor was soon on the line, a first in the weeks' worth of phone calls to the office. My initial thought: "This cannot be good."

The doctor explained that Hopkins had found insufficient evidence to "establish a definitive diagnosis," adding that the Baltimore pathologists recommended a repeat biopsy to clarify their "highly atypical and suspicious" findings.

Translation: With no consensus, the surgery was off for the time being.

Mistakes Do Happen

So, just as unexpectedly as the diagnosis had sent me into a funk, here was the same doctor telling me he couldn't operate because of the conflicting reports. Oddly, I was disappointed because I was oh so close to getting this "thing" out of me. But the fatalism soon gave way to a more rational wave of relief that if this couldn't be a dream, then maybe, just maybe, it could be a mistake.

Emotionally and physically spent by then, I put off the repeat biopsy for a couple weeks. And the whole process seemed less suffocating after the Hopkins diagnosis, or non-diagnosis. Knowing what to expect even made the thought of another biopsy much less dreadful.

Afterwards, I was back at the urologist's office Nov. 9, eight weeks to the day after he told me I had cancer. Repeat biopsy from the same outside lab in hand, he delivered the jaw-dropper -- I have "atypical" prostate cells but no malignancy. The similarities between the two are apparently enough to play tricks on the pathologists.

There's no known cause, there's no treatment. I'm relatively fit so the urologist was at a loss to recommend any drastic lifestyle changes.

But the condition is sometimes a precursor to cancer, sometimes not. That means I'll require aggressive monitoring for the foreseeable future, with quarterly PSA blood tests (instead of yearly) although as few biopsies as possible to avoid, as my urologist joked, "making Swiss cheese out of your prostate." I'll take the deal.

I now better appreciate that urologists and all other MDs are at the mercy of pathologists, who're doctors themselves tasked with deciphering the cellular-level behavior of tissue and organs. So I have no problems with my urologist. He can take my prostate anytime, if it comes to that.

It just won't be today.