In my opinion? Get a second opinion
By Howard Wolinsky
As a moderator for a support group for men on active surveillance for low-risk prostate cancer, one of the bits of advice the group regularly dispenses is these men ought to get a second and even a third opinion.
If you have doubts, don’t accept the first opinion rendered by your urologist if he/she is recommending a radical prostatectomy. The same goes for the pathologist who reads your slides, the radiologist who reads your MRI, and the radiation oncologist who is trying to persuade you to undergo his/her favorite therapy.
I personally have benefitted from second opinions on my so-called cancer journey.
I had been carefully watching as my PSA increased to 3.9 from 3.2 in summer 2010. My internist was alarmed because such steep increases in prostate-specific antigen were then seen as a sign of prostate cancer — though I was just below the arbitrary 4. 0 mark.
(Velocity is seen as less of an alarm these days than it was in 2010. Medical fashions can change like hemlines.)
So off I went to see a community urologist who performed a needle biopsy in his office.
The results were ambiguous. The biopsy disclosed I had some abnormal cells resembling cancer known as PINS, short for prostatic intraepithelial neoplasia. More medical freakouts. The research was mixed on PINS. But in those days, many doctors saw them as likely to develop into cancer.
(Again, with PINS, like velocity, medical fashions changed.)
The local pathologist suggested a second opinion.
He turned to the Top Gun of Prostate Pathology: Jonathan Epstein, MD, the guru of Gleason scoring at Johns Hopkins University in Baltimore,
Epstein, who views about 12,000 cases a year, called for calm in my case and suggested another biopsy in six months.
In December 2010, I dutifully underwent my second biopsy. The urologist anesthetized my prostate — something not all urologists do. Then, he took the samples. It felt like 14 snaps of rubber bands where the sun don’t shine. Some men find these snaps intolerably painful. I can put up with it.
This time, it was clear I had actual cancer, a tiny sliver of about a millimeter in a single core, out of 14 cores. I know now that wasn’t much, but I was susceptible to alarms from professionals I considered authority figures then.
The urologist called me on a Friday when the results came in and asked me to come to his office on the following Tuesday. It was the most anxious weekend I had in my life. I knew I was facing bad news.
But I actually had already studied my options, with surgery being at the top of the list, accompanied by the not insignificant possibility it would cause incontinence and impotence.
So my wife Judi and I went in to face the music. The urologist presented the good news-bad news shtick: The bad news is you have cancer, sir; the good news is I have an opening in the OR next Tuesday.
I had done my homework and asked about active surveillance, a relatively new approach to monitor prostate cancer rather than rushing in for surgery or other interventions. I asked the urologist about AS. He dismissed AS. “I don’t support it,” he sniffed.
I already had an appointment for a second opinion set up the next day with Scott Eggener, MD, a leading prostate expert at the University of Chicago.
Eggener stressed that Gleason 6 was good news and that my cancer burden was quite low, a speck of cancer in a single core plus it was slow-growing cancer. An oasis of calm. He declared me the “poster child” for active surveillance and predicted that in 10 years my cancer likely would be the same as it was on that cold December morning.
He was right. In fact, additional biopsies revealed no additional cancer.
(Some doctors suggested I had experienced a spontaneous remission. Others suggested most likely I still had a soupcon of cancer. I wrote about my vanishing tumor in MedPageToday.com. This prompted Peter Carroll, MD, an active surveillance pioneer, and his colleagues at the University of California, San Francisco, to look at their large cohort of men on AS. The results were published Nov. 17 in the Journal of Urology. Carroll told me recently that his group concluded the cancer is still lurking in the prostate but there was good news: Consistently negative results from biopsies indicated a reduced risk for interventions.)
Here’s my advice for you rookies in low-risk prostate cancerland: Maintain calm. This is slow-growing cancer in most cases so don’t rush into surgery or other interventions. If you don’t believe me, get a second opinion.
I have another opinion for men on active surveillance or those considering it: You will learn a lot about AS if you watch the recording of a webinar featuring none other than Gleason expert and the man with a respected second opinion Dr.Jonathan Epstein.
Watch the video here: https://www.youtube.com/watch?v=pv532Jelw7k
The program was is sponsored by AnCan, UsToo, ZERO-The End of Prostate Cancer, PCai, PCRI, and Cancer ABCs. This wasthe fourth and final webinar in the “AS & Beyond” series.
Howard Wolinsky is a Chicago-based writer. He has been nominated twice for the Pulitzer Prize. His new book “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic” was released in November 2020. For more information, go to Containandeliminate.com.