Mention Parkinson's disease and celebrities, actor/patient Michael J. Fox immediately comes to mind. His foundation has raised public awareness of the disease and has raised an eye-popping $650 million for research.
Mention polio, you may think of President Franklin D. Roosevelt, who had the disease and in 1938 founded the National Foundation for Infantile Paralysis, which became the March of Dimes -- fighting to cure polio 10 cents at a time.
Prostate cancer? The is long. Golfer Arnold Palmer and Generals Colin Powell and "Stormin' Norman" Schwarzkopf are among the few to adopt this as a cause. Singer Harry Belafonte spoke openly about how he overcame incontinence.
In 2016, actor, writer and director Ben Stiller about his diagnosis in 2014 at age 47 with intermediate-risk prostate cancer (Gleason 3+4) and his controversial move to have a radical prostatectomy. Some critics said he should have followed active surveillance because his well-publicized decision -- which "saved my life," he proclaimed -- could lead other men to undergo unnecessary prostatectomies and contribute to the over-treatment problem.
Typically, in cases of celebrities diagnosed with prostate cancer, publicists issue a news release about a star having been diagnosed early with low-risk disease and then being treated definitively with curative therapy, a radical prostatectomy or radiation. Then, silence.
Academy Award-winning actor Robert De Niro is an example of this. In 2003, he was diagnosed and had a prostatectomy. His publicist said, "The condition [prostate cancer] was detected at an early stage because of regular checkups, a result of his proactive personal healthcare program." That was all.
Happy Prostate Cancer Awareness Month.
"Celebs who are quick to say their life was saved rarely reveal the grade, Gleason score, or anything that would tell you whether they were high, low, or no risk," said Gary Schwitzer, recently retired journalist and communications professor, who often told cautionary tales about celebrity medicine.
Stiller, unlike most stars, shared specifics such as his Gleason score and his mental and emotional process in coming to grips with being diagnosed with a serious disease at a young age.
In 2012, billionaire Warren Buffett, the Wizard of Omaha, revealed he had been diagnosed with early-stage prostate cancer. "I've been told by my doctors that my condition is not remotely life-threatening or even debilitating in any meaningful way," he said. Still, he underwent radiation therapy. Was he reassuring his investors?
The impact of the rich and famous making their treatment choices public was underlined when Buffett and Stiller caught flak for undergoing treatment and not trying active surveillance. Buffett's doctors also were criticized for giving him PSA testing at age 75 because at that age the risks of treatment were greater than those from the disease.
For inexplicable reasons, prostate cancer has taken its toll on rock musicians, taking down Frank Zappa, Johnny Ramone, and Dan Fogelberg, all in their 50s. Phil Lesh, one of the founders of the Grateful Dead, was diagnosed with prostate cancer and underwent robotic surgery.
Just this month, Sir Rod Stewart was . Details are sparse as is typical in these cases. I think Jackie Gleason is the only Gleason the entertainment press knows to ask about.
Now 74, Stewart said was diagnosed 3 years ago and sat on the news. To get used to the idea? To protect his image somehow? Don't know.
The man who wrote "Forever Young" now is officially old. It must have been hard to accept his diagnosis, but he says he was cured. No details on the treatment.
"I'm in the clear, now, simply because I caught it early," he told the press. He took on the disease in secret.
But to his credit, Stewart finally stood up to prostate cancer to help other men. He urged them to be tested to detect prostate cancer early.
"Guys, you've got to really go to the doctor. Finger up the bum, no harm done," he said. Well said, sir. Classy.
In this time of active surveillance of low-risk (Gleason 3+3) and even intermediate-risk (3+4) prostate cancer, there is virtually no mention of AS being the choice of the stars. There are no poster boys for AS. No celebrities I know of stand up publicly for this strategy. In fact, I sense that they'd prefer to be treated than go to the trouble of following AS.
Did he or didn't he?
One accidental exception was Ian McKellen. Sir Ian is a much-celebrated Shakespearean actor who became high profile to the mass audience as he played the wizard Gandalf, head of the Fellowship of the Ring in the "Lord of the Rings" trilogy and the superhuman mutant Magneto in the X-men series.
McKellen came out of the closet as a gay man and became an activist for gay rights. But he apparently had remained in the closet about his cancer, seemingly reluctant to assume a public role as a man with low-risk prostate cancer.
In December 2012, while McKellen was promoting "The Hobbit: An Unexpected Journey" movie, he took an unexpected turn on his cancer journey.
A reporter from the Daily Mirror asked the actor how he was feeling. The thespian blurted out that he had been diagnosed with low-risk prostate cancer several years earlier. He said he had never been treated nor had the cancer spread.
McKellen said he initially feared the worst upon being diagnosed.
"You do gulp when you hear the news. It's like when you go for an HIV test, you go 'arghhh, is this the end of the road?' They come and say you have cancer of the prostate and then they say you can have it zapped, you can have it snipped but you are not a candidate for that. You are waitful watching."
Waitful watching? Sounds like active surveillance, but a protocol by any other name, to paraphrase the Bard, still avoids aggressive therapies.
Inexplicably, the day after the disclosure, McKellen's agent issued a denial. "No, he does not have prostate cancer," agent Chris Andrews told ABC News. "That was taken out of context and from an interview from years ago."
The confusion continued. McKellen said in his blog: "There have been new reports in the press of the old news that I have early prostate cancer. This was diagnosed six or seven years ago. There is no cause for alarm. I am examined regularly and the cancer is contained. I've not needed any treatment."
Some good came out of that episode. The Mirror said in late December 2012 that charities were inundated with calls from men who wanted to undergo screening for prostate cancer.
As far as I can tell, that has been the extent of McKellen's advocacy. Maybe he is doing more. In any case, no one says he is required to be the poster boy for AS. His plate is full with other causes celebres and his acting.
But why the seeming secret before 2012? And why the crossed wires with his agent? Inquiring minds want to know.
I contacted McKellen's agent Clair Dobbs in London in June about interviewing the 80-year-old actor. She said she'd try to arrange it but it might take a while. When I followed up two months later, she said: "Huge apologies... he is on tour currently and almost impossible to reach." Stonewalled.
Andrew Freedman, press agent for Broadway and Hollywood stars, told me he suspects McKellen's agent tried to quash the diagnosis to protect his client. And then the agent had McKellen come back with a softball message saying the issue was old news. A one-two publicity punch by a superstar. That's showbiz, folks.
I think that similar considerations may have prompted many other celebs with low-risk PCa to rush in for radical prostatectomies to just put the cancer behind them, hang impotence and incontinence.
The idea of living with cancer remains a foreign concept to the public at large and likely to agents, managers and entertainment industry execs.
There's a potential image problem in having cancer for actors whose trade demands that they appear young and vibrant. A lingering cancer diagnosis might make them appear vulnerable. News of having prostate cancer -- even though it was low-risk -- may not be viewed by the suits as a friend to a celeb's career. Cancer is cancer to many apparently even if it is as weak as a kitten.
The insurance factor
Image aside, I wonder if the insurance industry -- an important player in the business of show biz -- understands the idea of not treating cancers. Personally, I lost a half-million-dollar term life insurance policy after I was diagnosed with low-risk cancer in 2010.
I read that Harry Lennix, star of NBC's "The Blacklist," is a celebrity spokesman for Prostate Cancer Foundation for 2019, raising awareness about this common cancer.
I wondered what his Gleason score was, what his risk level is. It turns out he doesn't have prostate cancer at all. His press agent Freedman said Lennix was standing up for friends with the disease and to encourage men to be screened for early detection.
It is ironic that perhaps the highest-profile celebrity in the prostate cancer world now doesn't have prostate cancer.
Freedman rejected my theory that image and insurance were holding back other celebs from representing AS. He thinks the public can accept celebs with deadly and disabling diseases. "We are all vulnerable," he said.
He said the reason actors try to hide diseases such as prostate cancer is they worry it may affect their insurability. He said, "Insurance is a real concern for working actors." He said producers have nightmares about the high costs of canceling or recasting should a major player be incapacitated. So insurance is a big deal.
British actor, comedian and writer Stephen Fry, who underwent a radical prostatectomy in 2018 for advanced prostate cancer (Gleason 4+4), explained how this works in a , co-authored with his urologic surgeon.
"Being an actor requires attendance, punctuality, reliability, and dependability: every new production begins for me not with a costume fitting or rehearsal, but a check-up," Fry wrote.
"Without a medical all clear, insurance companies won't cover you and without cover a producer can't risk hiring you. So all actors lucky enough to be in regular work will routinely find themselves in a doctor's surgery several times a year having their abdomens palpated, blood pressure taken, and relevant bodily fluids drawn. Familiarity breeds confidence and over the years I have never gone home from a medical examination and then lain awake at night worrying about what the results might be."
Fry used his diagnosis as a teaching moment. His openness resonated with British men. The National Health Service said there was a significant increase in visits to the NHS website by men who listened to Fry and decided to learn about prostate cancer. Screening skyrocketed.
AS can use some star power. The numbers of men opting for AS are increasing, but many men still are undergoing unnecessary treatment.
Researchers from Dana-Farber/Brigham and Women's Cancer Center earlier this year that use of AS rose from 14.5% of American men with low-risk prostate cancer in 2010 to 42.1% in 2015. This was a big increase but lags far behind the nearly 90% rate for AS in Sweden.
Of the 175,000 American men a year diagnosed with prostate cancer, about 30% have the low-risk variety. These men need help in choosing a course of treatment. They need high-profile role models who can show them how to live successfully with this cancer.
I hope there is a celebrity on AS ready to emerge from the wings and tell his story.