A Patient's Journey: Me and My 'Lame' Cancer

The USPSTF changed its position on PSA testing, so where does that leave active surveillance?

Howard Wolinsky a journalist based in the Chicago area, was diagnosed with early prostate cancer in 2010. In an ongoing series of articles for MedPage Today, he describes his journey from diagnosis to the decision to chose active surveillance. In this latest installment, he pursues the possibility that a change in USPSTF recommendations could mean a change for him.

I am one of the lucky ones. My prostate cancer has only been seen once in five biopsies over seven years. My urologist says I have a "lame cancer." I can live with that.

In that single needle biopsy in November 2010, a 1-millimeter slice of cancer was found. I was diagnosed with a Gleason 3+3. That cancer has never been seen since, though it sends signals via PSA.

One of my urologists described me as "the poster child" for active surveillance (AS) because I may have cancer, but even untreated, it's not likely to cause me any problems.

My first urologist tried to rush me into surgery. He didn't support AS. But I got a second opinion and dodged a prostatectomy and its potential side effects and instead entered an AS program.

Back in 2010, maybe 6% of U.S. patients diagnosed with Gleason 3+3 went on AS. That percentage is now more than 50%. I was an accidental pioneer.

An Uneventful Life

The years following my diagnosis have been uneventful for me as the research on AS predicted they would be.

Most days since I got on the prostate cancer train, I don't think about the indolent passenger hidden in my prostate.

Twice a year I do. Biannual PSAs and prostate exams do bring things into focus. I also think about it when an occasional study or new guideline grabs my attention.

This month -- May 2017 -- 7 years since my PSA started to gain velocity at 3.95 nanograms per milliliter of blood, eventually to reach a peak of nearly 9 and then plummet, my PSA was 5.2. Six months ago it was 4.8 six months and a year ago it was 5.1.

"Stable," declared Brian Helfand, MD, PhD, of NorthShore University HealthSystem, my urologist for the past year.

That comment sounds abrupt. But Helfand has an easy-going manner for a surgeon who deals with some rather grim diseases. I may wish I had never been diagnosed. But in Helfand's world, my cancer is a cakewalk.

When he entered the exam room, he joked about my appearance. "You look different," he said. It was my beard. Then, he riffed about his inability to grow a respectable beard.

Most of the visit was devoted to my list of questions, spinning off the news.

This time I wanted to talk about the U.S. Preventive Services Task Force's new draft guidelines on PSA screening.

In the time since I was diagnosed, the Task Force dramatically switched directions on the PSA.

MedPage Today reported that in 2012 the task force recommended against routine screening with PSA for men of any age. This was at odds with the recommendations of the American Urological Association (AUA) and, to a lesser extent, the American Cancer Society (ACS), both of which supported decision-making based on clinician-patient discussion,

The task force came under fire for this recommendation.

This April, it came out with a new draft recommendation more aligned with AUA and ACS, supporting patient-physician discussions regarding PSA screening in men ages 55 to 69.

"The decision about whether to be screened for prostate cancer should be an individual one. Screening offers a small potential benefit of reducing the chance of dying of prostate cancer. However, many men will experience potential harms of screening, including false-positive results that require additional testing and possible prostate biopsy; overdiagnosis and overtreatment; and treatment complications, such as incontinence and impotence," said the task force.

The draft guidelines presented a firm position for men over 70: "The USPSTF recommends against PSA-based screening for prostate cancer in men age 70 years and older."

This is what piqued my interest. I wondered if the draft guidelines made any difference to me. I am 69 now, but will be 70 in September.

Et Moi?

I was well aware that the horse likely was out of the barn for me since I already had been diagnosed. You can't unring the bell. But still ...

Helfand confirmed that guidelines don't apply to men like me who already have been diagnosed.

But this opened a discussion on whether I could drop PSAs, biopsies, and MRIs all together or undergo them less frequently.

While PSAs are debated as a screening tool, they are accepted for monitoring disease in men like me who have been diagnosed with prostate cancer. PSAs show whether the cancer is stable or trouble may be brewing.

Helfand pointed out my frequency of biopsies -- a test I find tolerable, but one that causes some men excruciating pain even under anesthesia -- already had been reduced. In the beginning, I had annual biopsies. Now, I have them every 3 years.

Can the biopsies stop if the PSA remains stable? Nope. At least not for a while.

"The rationale is if you look at the age of where most people die or develop metastases is older. These guys have all been diagnosed or they presented as de novo as bad disease. Once you hit 85, maybe we can stop. However, no one really knows when to stop following in healthy men" Helfand said. "As a urologic society, we would really like to stop following these 'lame tumors,' but we just don't have great predictors. Sometimes the lame ones turn up to be more 'exciting' in the future. That is the uncertainty around AS."

Alternatives to Needle Biopsy?

MRIs don't cut it as a biopsy replacement. "The data just isn't there to show that you don't have to do a biopsy or you can decrease the frequency of biopsies," he said.

I asked about the emerging field of liquid biopsy.

"Researchers are looking into liquid biopsies as an alternative to tissue biopsies," Helfand said. "What is the value of liquid biopsies in organ-confined disease? And the truth is, it's like zero. They don't have enough cell-free DNA. Advanced disease, that's another story."

Helfand stressed: "Prostate cancer for you is just such a slow-growing, lame disease in a good way. Your cancer is not releasing a lot of cell-free DNA [necessary for liquid biopsies]. We don't have enough material. That's not a bad thing."

The nearly hour-long session ended with a digital exam.

"You have a prostate," he confirmed.

So nothing unusual.

I and my lame cancer return to him in December.

last updated 05.26.2017