From June 30 to July 5 we are republishing one of our most popular series. Howard Wolinsky a journalist based in the Chicago area, was diagnosed with early prostate cancer in 2010. In the ongoing series, he describes his journey from diagnosis to the decision to chose active surveillance. This fifth and most recent installment explains how many factors often complicate his decisions.
I thought I was about to start exploring the genomics of my Gleason 6 prostate cancer, which was diagnosed in late 2010.
But then I ran into a couple setbacks.
First off, my new urologist, Brian Helfand, MD, PhD, asked me to obtain the slides from my biopsy.
Easier said than done.
I called the office of my first urologist, the one who wanted to rush me into a prostatectomy. I was informed that the office had no record of my ever having been seen there for prostate cancer.
I mulled it over. I knew when I moved over to the active surveillance program at the University of Chicago, they had reviewed my slides. It took a bit of digging, but I found that U. of C. had shipped the biopsy back to a lab in Tennessee, where they had first been reviewed.
The Long Wait
I made arrangements to have the slides sent to Helfand's office. Then, all I had to do was wait -- and that was not easy.
Weeks passed and still the slides did not arrive. Meanwhile, Helfand and I couldn't decide which, if any, DNA test could be used on what would be at most a one-millimeter long sample.
More weeks passed and still we waited.
Meanwhile, I was supposed to undergo a what I considered a routine biopsy -- until, from out of left field, I encountered some questions about the need for that "routine biopsy." The questioner? My internist.
This will require some background.
When I joined a program for active surveillance of prostate cancer in 2010, the approach was still relatively new.
Initially, my urologist,, at the University of Chicago, had me undergo a PSA test and digital rectal exam every 6 months and a prostate biopsy annually. It seemed like a good way to track a cancer rated as a slow-growing Gleason 6. If there was a flare-up, there would be plenty of time for options such as a prostatectomy, radiation, or cryotherapy.
Active surveillance changed my life: 6 years ago, I was on the verge of a prostatectomy. Now I am living with cancer. Eggener told me I was the poster boy for active surveillance.
Over the years, my prostate cancer seemed to be taking a nap. My PSAs have been trending down: from a high of nearly 9 ng/mL of blood to 5 ng/ml recently. I switched to annual PSAs from a couple times a year. A new PSA test, the Prostate Health Index, offered good news earlier this year.
Then, an MRI in January showed no evidence of prostate cancer.
Serial Biopsies
What about a biopsy? Annual biopsies in 2011, 2012, and 2013 showed no cancer. So, Eggener recommended a biopsy vacation.
Last year, he said I ought to have a biopsy in 2016. My new urologist Helfand, who works at NorthShore University HealthSystem in Chicago's northern suburbs, who I switched to in January, agreed.
I scheduled a biopsy for July. I didn't think much about it.
But earlier this month, during a routine examine, my internist , made me question my prostate care.
We had chatted about my overall health -- excellent overall, all things considered. I updated him about my prostate care.
He asked me if I wanted his opinion. He is a careful, thoughtful physician. He always has a rationale with back-up information for what he recommends -- and what he doesn't.
He's the one who put me on the PSA treadmill to begin with and when my PSA level accelerated above 4 ng/ml, he was the one who sent me to a urologist for my first biopsy.
"Do You Want My Opinion?"
So sure, I wanted to hear what he had to say.
And what he told me gave me pause.
Too much attention is being focused on this small organ (the prostate gland), he said, noting that in his 30+ years of practice only two of his patients died from prostate cancer. He suggested that multiple tests may simply be adding data for researchers.
"Speaking as an internist, not a urologist, my feeling is that you could pursue one of a few reasonable options: first one is to continue to watch PSA only, and as long as it is stable or declining, no additional action is needed. The second is to monitor the more sensitive tests like PHI, or PCA3. The third option is to get periodic biopsy, could be annual or less depending on the institution doing the research," he explained.
Then, he dropped the bomb. "I am OK with the first option, but should you chose any other option, you may be part of a research, and that was what I meant by 'helping them [researchers]' establish future protocols," he said.
He said the approach was new and there were no guidelines anyway.
I was rattled.
I also heard from, a former University of Chicago urologist I have known for years and a longtime critic of prostate cancer care. He also questioned the need for the biopsy: "In general, I am a minimalist and do not believe in over testing. The question for you is what would change your approach. In the face of a dropping PSA, the biopsy might be less helpful," said Chodak, author of the patient-friendly "Winning the Battle Against Prostate Cancer: Get The Treatment That's Right For You."
Dissension in prostate-cancer land. The news could have been much, much worse of course. But it's confusing when professionals you respect offer conflicting advice. My panel was split down the middle.
I faced a Shakespearean dilemma: To biopsy or not to biopsy? That was the question.
I started to reconsider the procedure, even went so far as to call and postpone it so I could mull things over.
The test has minor risks, including infection and bleeding. With a local anesthetic, it really doesn't hurt -- though I've heard men complain about biopsies and say they were glad to have had a prostatectomy to be done with biopsies.
Originally, the plan was for me to undergo a focused biopsy in which any cancer seen on an MRI would be targeted with 3-D ultrasound. But no targets were found during the MRI.
Is This Really Necessary?
So why bother? I talked with Helfand.
He said he was surprised at fellow urologist Chodak's comments, but Chodak has the expertise to offer an an opinion.
He said he was not as surprised at the primary care physician's position.
"In the world of medicine, everyone has their bias. Okay? I would say that Scott (Eggener, MD, my previous urologist) and I have our bias, because this is what we do, prostate cancer. Right? And family practitioners and internists have their own bias," he said.
Since the U.S. Preventive Services Task Force (USPSTF) recommendation against routine PSA screening for all men, primary care physicians have scaled back on ordering PSA testing. Urologists, however, have stuck with PSAs.
From his perspective, Helfand said the guidelines, which he expects eventually will be rescinded, have "done a lot of harm." He noted that the lack of PSA information has meant that fewer men are undergoing the "gold standard" for diagnosing prostate cancer: the biopsy.
"The incidence of a positive biopsy after a negative MRI is still significant," he said. The rate is as high as 30% in most data series and often higher, Helfand said.
He said he resented the primary care physician's comments. "Ask him even in his two patients who died of cancer, and I'm sure there are many more who have metastatic disease, how much did he take care of them? How much did he hold their hands when they were dying? And I would ask him that because I don't think he knows how bad it can be. And because he just doesn't have that experience," Helfand said.
Primary Care vs. Oncologist
He said primary care physicians are sending a confusing message about prostate cancer: "Most internists and family docs, especially, tell me they don't even, at least to my face, have an opinion [about screening] at this stage. Most of them are funny. They'll say, 'Well, we don't really screen for prostate cancer.' But wait, what if a patient has prostate cancer, then you need to have that treated. The [primary care physicians] don't really understand this."
The saying goes: Most men die with prostate cancer not from it -- Baghdan's point. But some men still die from prostate cancer -- Helfand's point.
According to the American Cancer Society, prostate cancer is second only in incidence to skin cancer in American men. The society estimates there will be 180,890 new cases of prostate cancer and 26,120 deaths from prostate cancer in 2016.
Helfand said he agreed with Baghdan that my prostate cancer most likely will never become aggressive. But he said there's no way to know that for sure now, which justifies the occasional biopsy. He stressed that good results from a PSA test and an MRI do not replace the need for biopsies.
Helfand said when active surveillance first became available a few years ago, programs typically recommended annual biopsies. He said researchers found men didn't want and may not need annual needle biopsies. As researchers began to better understand the behavior of the individual patient's prostate, they gained more confidence and reduced the frequency of biopsies to every 2 years and then to 3 years.
"I'm not itching to stick a needle in the prostate. But I have no other way to monitor it," Helfand said.
In my case, he said: "The issue is that there are no guarantees. We know that PSA and all other blood tests are not perfect for men with prostate cancer undergoing [active surveillance]. [That means] that many men have 'stable' PSA values, but their cancer progresses at the time of next biopsy. Therefore, it is not a perfect substitute to follow blood tests over time. In fact, nothing truly replaces the information from a biopsy. It is never an absolute. However, just like PSA screening, there are potential risks and benefits to everything that we do."
I asked him if it would matter if I postponed my biopsy.
"Am I going to lose sleep over it? No, I'm certainly not. But it is something that we're going to continue to look at each other and say, 'I don't know, are we doing the right thing?'" Helfand said. I not only had a second opinion, but a third and fourth. I was the decider.
After a discussion with my wife, I've decided to go for it and asked Helfand to save the day for me.
Better to know than not to know.
Read more from the series Prostate Cancer: A Patient's Journey