The importance of prostate cancer screening: my story

I have no symptoms. I'm in otherwise excellent health. But I've been diagnosed.

I was recently diagnosed with prostate cancer. And I’m going to be fine.

Fortunately, it’s localized, and it’s been detected early — so early that I don’t require treatment right now beyond what is called active surveillance, which means monitoring how fast, or how slowly, it grows. If and when I do require further treatment there are options and it is curable.

All of that said, I can’t tell you that the past few weeks have not been a bit excruciating.

Waiting two weeks for biopsy results is living in a cesspool of anxiety. Finding out the news that you have cancer is a gut punch, particularly before you know many of the details. But learning all the facts is key to feeling in control of the situation.

I want to explain what happened so that maybe it can help other people, particularly with regard to the vital importance of early detection.

Back in February, I went for my annual physical and it turned out my levels of PSA — prostate-specific antigen — were slightly-elevated. For those who don’t know, this is a number determined via a routine blood test. I had no symptoms of prostate cancer. No physical exam showed anything out of the ordinary. Even a sonogram was normal.

Sometimes PSA levels in the blood can spike a little bit from working out a lot, and particularly from riding a bike. And some people just have higher levels at a given point, or develop PSA levels that bounce up and down. I could have been in those categories.

So, my doctors and I waited six months and did another PSA test. The number was slightly more elevated.

Only 25% of people with slightly elevated PSA levels, but no symptoms or indications via a digital rectal exam, turn out to have prostate cancer. There are other less serious health issues — such as a urinary tract infection — that can cause the number to be elevated.

The next step should have been an MRI. But my insurance company wouldn’t pay for it because nothing else beyond my slightly-elevated PSA levels indicated prostate cancer. In other words, I didn’t appear sick enough to find out how sick I was. This is another reason why health insurance is a disaster. In case you needed another reason.

So I had a biopsy. It wasn’t that bad, actually. Fifteen to 20 minutes in the urologists’s office, and done. Local anesthesia and some valium. Slight discomfort but no real pain.

Then the wait. And then the phone call from my urologist, after which my heart sank.

But I felt almost 100% better after my husband David and I went into the office, where my urologist explained it was found early and showed us precisely where it was limited to in the prostate. Finally, he said he fully anticipated a CT scan and a whole-body bone scan would show it had not spread beyond the prostate. (Both scans, performed a week later during a full day in a hospital, confirmed his belief.) My friend Joe had advised me to record the meeting with the doctor because I would be so overwhelmed I’d forget just about everything. My mother thought that was such smart advice, and she was right.

Active surveillance — basically, monitoring the PSA numbers via a blood test every few months — is actually now considered a treatment. If and when I require or would like further treatment, there are choices, different options with excellent outcomes. I have time to research them and weigh them, and get other opinions.

Having that ability can in large part be attributed to early detection.

“Friends” star James Michael Tyler, who famously played Gunther, tragically died this week due to prostate cancer at the age of 59. Tyler appears to have a had a much more aggressive form of prostate cancer. But early detection still would have made a difference. The cancer had already spread to his bones by 2018 when he had his very first PSA test, which showed staggeringly high levels of PSA in his blood. (A video message from him recorded in June of this year is at the end of this post). Tyler said he should have “listened to my wonderful wife” and gotten tested sooner:

I would have gone in earlier, and it would have been, hopefully, caught earlier. The next time you go in for just a basic exam or your yearly check-up, please ask your doctor for a PSA test. Caught early, 99 percent treatable.

So I want to take this opportunity to urge everyone who has a prostate and isn’t getting PSA-tested to speak with your doctor about regularly getting a PSA test. I’ve now learned that some doctors advocate regular screening when patients turn 40 while other doctors don’t test at all, even among older patients, unless a patient requests it.

The Prostate Cancer Foundation recommends screening beginning at 40 if you are Black, or have a family history of prostate cancer. And beginning at 45 for everyone else. The American Cancer Society says screening should begin at 50, and at 45 if you’re Black, or there is a family history. The U.S. Preventative Services Task Force recommends talking to your doctor about screening beginning at 55 (and only screening until age 69).

These differences in recommendations have caused confusion. They stem, for the most part, from concerns among medical professionals about too many unnecessary biopsies and over-treatment. So, if your doctor hasn’t already decided to regularly screen you (and I’m thankful that mine did) you have to make the decision for yourself and ask about it. It’s just a blood test. It can’t hurt you. But it can save your life.

You should also be getting a routine digital rectal exam (DRE), which takes just a minute. Some doctors don’t perform it. Some patients don’t like to have it done. Get over it. Sometimes PSA levels will reveal a problem while a DRE doesn’t show it (as in my case). But in other instances a DRE will indicate an issue that a PSA test doesn’t reveal.

Let me repeat: I had —and still have — no symptoms. I feel great, and am in otherwise excellent physical condition. I’m very active and work out at the gym or run outside just about every day. I’ve been vegetarian for over 30 years. So don’t think you’re too healthy, or that you’d feel ill or would have some other indications.

I’m sure many of you have been down this road, or are on it now, and will have a lot to add. I’m grateful for your thoughts and experiences. Certainly queer people of my generation lived through the early HIV epidemic and empowered ourselves, learning that information is power. My experience as an AIDS activist has taught me a lot and I’m confident it’s prepared me for this.

I’ve already come to realize, for example, how straight men and gay men, as well as transgender women, are faced with uniquely different sets of challenges when it comes to prostate cancer treatments, possible side effects affecting sexual health and other issues. And you can guess which group the medical field is often more geared toward focusing on.

I consider myself very lucky. I benefited from early detection. I live in a city with the best doctors and medical technology in the world. And I have comparatively good health insurance, headaches and ridiculousness notwithstanding.

It means very little to tell people to get PSA-tested if they are uninsured and don’t have adequate medical care. And that is the case for millions of Americans. My diagnosis reconfirms my commitment — as an activist, a journalist and a radio host — to fight for access to health care for everyone.

UPDATE, 1/18/22: I wrote this piece after I did in fact undergo a radiation treatment in early 2022.