Guidelines followed in UK vs, say US can be different. UK tries to avoid biopsies and also AS. (I have an upcoming story on that.)
But we don't know your Gleason score, PI-RADS score, size and number of lesions, family history and maybe genetics. What factor led to your RP? UK also is cautious in use of PSA testing--understand patients need to request it.
I don’t follow the argument here. Ive just had a RP in the UK. Ive learned that even with a Gleason score, there are still individual specifics that lead to AS or RP. Is this argument an health insurance thing and Ive just misunderstood? 🙏🏻
I did a survey a few years ago, very small. But 30% of respondents said they were hiding something re AS.
Many used fake names in support groups and avoided any recording meetings.
Some didn't want to scare elderly patients about the low-risk PCa diagnosis and ended up withholding information from brothers, sisters, cousins, who would need to know. For example, BRCA has significance not only for breast cancer but prostate cancer and other cancers.
Some were afraid they would lose job promotions or clients because they had a wimpy cancer. When they went public, these guys found they experienced no consequences. But there is that risk.
Cancer carries a stigma. Unless we speak up, it just perpetuates ignorance and discrimination.
God, cannot agree with either of you more! Correct, Steve, there's far to much gray area in U.S. employment law to stop pervasive discrimination through the courts divulging to an employer. To your point, it IS suicide, career suicide without foreknowledge how ownership leans. BUT, misinformation, disinformation, call it what you will, which has hindered truth regarding this cancer decades longer than other countries, now being less a threat, two words describe actions of those "bucking" pervasive silence and the reaction to their individual coverage: moral character and integrity. As it is, most with similar opportunity to step forward don't, watching vicariously, "without skin in the game." What was Roosevelt's famous line, "The only thing we have to fear is fear itself!"
Howard, I'm afraid I must disagree with your position.
I worked for a Federal Government contractor. One would think that some of the strongest protections to be had would be in that arena.
As one who had polio in the 1950's I always knew that I started with a deficit when it came to being selected for a job.
After the ADA, I thought that, finally, only my true qualifications would matter, not that I had a disability.
I was sitting in the adjacent office when I overheard my boss, some one who gave me the impression that he had my back, discussing a "forced" project change, from priject lead to "also ran" on a different project.
My boss suggested that I might sue the company, should they do that.
I have NEVER sued anyone over disability issues. I have never threatened to sue.
And yet, that was the position of my co-worker and, I thought, friend.
Your employer is not your friend. HR represents the interests of company, and the companies insurance carrier.
Loose your job, loose your insurance.
Try to get insurance with a cancer diagnosis, and it may be impossible.
You can't put the genie back in the bottle!
I truly don't blame people for not "comming out".
I think. Howard, you might get a better reception, if you ask your interviwee "Is there anything about your personal experience with prostate cancer that you would care to share with our audience?"
In the early stages of their diagnosis, they may be reluctant. But, later on, when their diagnosis is better understood and they know whether they will "live with prostate cancer or die from prostate cancer." they may be more willing to share, with an interviewer that isn't out for blood at any cost.
I would never pressure a "civilian" to disclose anything about their cancer.
But I do think high-profile men have gotten perks whether they are head of DoD, head of NIH, a rock star, a star athlete, a politician.
(It seems unbelievable that Secretary Austin tried to hide his PCa from his boss, the President of the US and that nation's top medical researcher didn't share the fact for fice years that he was on AS.)
As a journalist, I can't force them to speak openly about their condition to help others. I can't force them to be leaders. I can only ask or suggest.
Eventually, somehow their diagnoses were made public.
But it usually is not specific. Usually, it's blah-blah abou cancer being caught and treated early. If really early, why do so many get treated?
My advocacy is focuses on men getting complete information about their choices, not just advocated AS.
Only a handful of high-profile guys have gone public with the fact that they're on AS.
I suggest that there must be more of them out there, that they're hiding their AS because they can.
Those who hide it are adding to tghe stigma and secrecy surrouding a cancer diagnosis.
I always ask when I hear about A-listers being treated early and getting aggressive treatment.
Maybe these men will be reluctant now but will open up later. Maybe.
Steve 1 said: "They may be more willing to share, with an interviewer that isn't out for blood at any cost."
Blood at any cost? I ask politely. I don't know what you are imagining. A-listers know how the news game is played. They can take--or ignore--some hard questions or being called out for avoiding them.
While I understand the "Advocate's zeal" at wanting to use high profile people who are unlucky enough to have won/lost the prostate cancer lottery, I very strongly believe that ut is the patients right to control the dissemination of health care information about themselves.
If someone has a situation where they don't want their cancer diagnosis publicly known, it is THEIR RIGHT to decide when and where that information is shared.
Scolding someone for mot using their station in life to advance the cause of "Active Surveillance" just drives people further into the "darkness".
As a person who had childhood polio, I believed that once you had gotten over your acute polio, you had little else to worry about.
That changed in the early 1980's when researchers announced that Post Polio Syndrome was a "thing", and that I might expect that increasing disability could be a future problem.
I firmly believe that I lost a shot at a major career advancement due to my managers being afraid of the "what if".
There can be lots of reasons why people don't wish to share there health status.
If you have any doubt, just look at Trump's response to requests for such information.
Celebrate those who wish to share. Respect those who don't.
We are talking about public figures here. My view is that they are privileged and should want to pay it forward as role models.
As you said: celebrate those who wish to share, like Woj and Colin. I did.
But I think public figures should have a higher bar as leaders and role models.
As a long-time (50 years) journalist, I have often asked high-profile individuals to respond to questions about their private business that may have some bearing to the public doings.
I can't force any of them to answer my questions. I do feel I have the right and duty to ask the questions.
The questions may seem harsh. But you never know what you'll get unless you ask.
I am going to write about the Secretary of Defense who withheld his PCa diagnosis and treatment from his boss--the President of the USA--and the American public. That was another big event in this space in 2024.
Congress grilled him on response. As a journalist and advocate for patients like us, I felt I needed to question him about what he had done.
I would only do that to public figures. I would never do that to private citizens/patients.
I got some pushback when I raised questions about Sec. Austin. But I will agree to disagree.
I contacted Collins several times and he declined to grant an interview, But he gave some softball interviews to some reporters where he could control the message.
Again, he's played in the Bigs. He should be able to take some scrutiny about keeping his AS a secret for five years.
Andy,
Thanks for writing. And again I'm not a doctor.
Hard to tell what's going on.
Guidelines followed in UK vs, say US can be different. UK tries to avoid biopsies and also AS. (I have an upcoming story on that.)
But we don't know your Gleason score, PI-RADS score, size and number of lesions, family history and maybe genetics. What factor led to your RP? UK also is cautious in use of PSA testing--understand patients need to request it.
Howard
I don’t follow the argument here. Ive just had a RP in the UK. Ive learned that even with a Gleason score, there are still individual specifics that lead to AS or RP. Is this argument an health insurance thing and Ive just misunderstood? 🙏🏻
Thanks.
I did a survey a few years ago, very small. But 30% of respondents said they were hiding something re AS.
Many used fake names in support groups and avoided any recording meetings.
Some didn't want to scare elderly patients about the low-risk PCa diagnosis and ended up withholding information from brothers, sisters, cousins, who would need to know. For example, BRCA has significance not only for breast cancer but prostate cancer and other cancers.
Some were afraid they would lose job promotions or clients because they had a wimpy cancer. When they went public, these guys found they experienced no consequences. But there is that risk.
Cancer carries a stigma. Unless we speak up, it just perpetuates ignorance and discrimination.
Howard
God, cannot agree with either of you more! Correct, Steve, there's far to much gray area in U.S. employment law to stop pervasive discrimination through the courts divulging to an employer. To your point, it IS suicide, career suicide without foreknowledge how ownership leans. BUT, misinformation, disinformation, call it what you will, which has hindered truth regarding this cancer decades longer than other countries, now being less a threat, two words describe actions of those "bucking" pervasive silence and the reaction to their individual coverage: moral character and integrity. As it is, most with similar opportunity to step forward don't, watching vicariously, "without skin in the game." What was Roosevelt's famous line, "The only thing we have to fear is fear itself!"
Howard, I'm afraid I must disagree with your position.
I worked for a Federal Government contractor. One would think that some of the strongest protections to be had would be in that arena.
As one who had polio in the 1950's I always knew that I started with a deficit when it came to being selected for a job.
After the ADA, I thought that, finally, only my true qualifications would matter, not that I had a disability.
I was sitting in the adjacent office when I overheard my boss, some one who gave me the impression that he had my back, discussing a "forced" project change, from priject lead to "also ran" on a different project.
My boss suggested that I might sue the company, should they do that.
I have NEVER sued anyone over disability issues. I have never threatened to sue.
And yet, that was the position of my co-worker and, I thought, friend.
Your employer is not your friend. HR represents the interests of company, and the companies insurance carrier.
Loose your job, loose your insurance.
Try to get insurance with a cancer diagnosis, and it may be impossible.
You can't put the genie back in the bottle!
I truly don't blame people for not "comming out".
I think. Howard, you might get a better reception, if you ask your interviwee "Is there anything about your personal experience with prostate cancer that you would care to share with our audience?"
In the early stages of their diagnosis, they may be reluctant. But, later on, when their diagnosis is better understood and they know whether they will "live with prostate cancer or die from prostate cancer." they may be more willing to share, with an interviewer that isn't out for blood at any cost.
Steves,
I would never pressure a "civilian" to disclose anything about their cancer.
But I do think high-profile men have gotten perks whether they are head of DoD, head of NIH, a rock star, a star athlete, a politician.
(It seems unbelievable that Secretary Austin tried to hide his PCa from his boss, the President of the US and that nation's top medical researcher didn't share the fact for fice years that he was on AS.)
As a journalist, I can't force them to speak openly about their condition to help others. I can't force them to be leaders. I can only ask or suggest.
Eventually, somehow their diagnoses were made public.
But it usually is not specific. Usually, it's blah-blah abou cancer being caught and treated early. If really early, why do so many get treated?
My advocacy is focuses on men getting complete information about their choices, not just advocated AS.
Only a handful of high-profile guys have gone public with the fact that they're on AS.
I suggest that there must be more of them out there, that they're hiding their AS because they can.
Those who hide it are adding to tghe stigma and secrecy surrouding a cancer diagnosis.
I always ask when I hear about A-listers being treated early and getting aggressive treatment.
Maybe these men will be reluctant now but will open up later. Maybe.
Steve 1 said: "They may be more willing to share, with an interviewer that isn't out for blood at any cost."
Blood at any cost? I ask politely. I don't know what you are imagining. A-listers know how the news game is played. They can take--or ignore--some hard questions or being called out for avoiding them.
Howard
Howard,
While I understand the "Advocate's zeal" at wanting to use high profile people who are unlucky enough to have won/lost the prostate cancer lottery, I very strongly believe that ut is the patients right to control the dissemination of health care information about themselves.
If someone has a situation where they don't want their cancer diagnosis publicly known, it is THEIR RIGHT to decide when and where that information is shared.
Scolding someone for mot using their station in life to advance the cause of "Active Surveillance" just drives people further into the "darkness".
As a person who had childhood polio, I believed that once you had gotten over your acute polio, you had little else to worry about.
That changed in the early 1980's when researchers announced that Post Polio Syndrome was a "thing", and that I might expect that increasing disability could be a future problem.
I firmly believe that I lost a shot at a major career advancement due to my managers being afraid of the "what if".
There can be lots of reasons why people don't wish to share there health status.
If you have any doubt, just look at Trump's response to requests for such information.
Celebrate those who wish to share. Respect those who don't.
Thanks
Thanks, Steve.
We are talking about public figures here. My view is that they are privileged and should want to pay it forward as role models.
As you said: celebrate those who wish to share, like Woj and Colin. I did.
But I think public figures should have a higher bar as leaders and role models.
As a long-time (50 years) journalist, I have often asked high-profile individuals to respond to questions about their private business that may have some bearing to the public doings.
I can't force any of them to answer my questions. I do feel I have the right and duty to ask the questions.
The questions may seem harsh. But you never know what you'll get unless you ask.
I am going to write about the Secretary of Defense who withheld his PCa diagnosis and treatment from his boss--the President of the USA--and the American public. That was another big event in this space in 2024.
Congress grilled him on response. As a journalist and advocate for patients like us, I felt I needed to question him about what he had done.
I would only do that to public figures. I would never do that to private citizens/patients.
I got some pushback when I raised questions about Sec. Austin. But I will agree to disagree.
I contacted Collins several times and he declined to grant an interview, But he gave some softball interviews to some reporters where he could control the message.
Again, he's played in the Bigs. He should be able to take some scrutiny about keeping his AS a secret for five years.