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!"
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.
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,
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.