Those are the words of Warren Buffet, and from what has been published about his prostate cancer, he might be in a better seat if he was in one of those dry spells re ideas about treatment… and I keep pulling my hair out wondering what national advocacy groups are doing. Will they rise to the challenge and approach Mr. Buffet with an incredible opportunity… learn more about his disease before subjecting himself to side-effects and the possibility of life-shortening treatment toxicity? Or raise his level of decision making awareness to the point that he might educate other men who are diagnosed as well as he does investors? I mean, it would be a real shame if the only thing anybody asked him for was money and to talk about screening and how happy he is that he (perhaps) underwent a treatment he did not need…
“Economic medicine that was previously meted out by the cupful has recently been dispensed by the barrel. These once unthinkable dosages will almost certainly bring on unwelcome after-effects. Their precise nature is anyone’s guess, though one likely consequence is an onslaught of inflation.”
-Warren Buffet
why don’t we care?
By · CommentsJust reflecting on an incident last year. I was out for a jog in my neighborhood, I saw a young family out for a walk… always a wonderful thing to see. The young daughter got something in her eye and began to cry. Both parents immediately rushed to her, letting go of the baby stroller the mother was pushing. As they huddled around their daughter – the baby stroller slowly gained momentum down a hill towards an intersection. My own instinct caused me to pick up pace to a panicked run as I crossed the street to keep the carriage from rolling into the road… with no idea of its contents. Meanwhile a man in a car and a lady walking her dog complacently watched. As I caught the carriage just before it rolled off of the sidewalk and into the street – yes, a baby was in the carriage… I ran the carriage back to the parents who numbly thanked me. About 5 minutes later the dad pulled up to me in a car and thanked me for “saving” their baby. A few days later the dog walking lady commented that there must have been some story in my life that had something to do with the baby carriage incident. The truth is – NO – there is no trauma in my life that caused me to behave like a concerned and caring human being. My maternal instincts caused me to care whether or not a child that may be within that carriage ended up as road pizza. Lesson being people in general need to wake up…. we are intrinsically connected and each and every one of us every now and then has the opportunity to make a difference. So if you aren’t already awake like that – now more than ever, we need to WAKE UP.
Ignorance trumps many dimensions of social justice
By · CommentsWhat happened yesterday in NC (passing of NC Amendment 1) is shameful beyond reason. If you claim to be an advocate for men’s health and you do not advocate for veterans or if you support anti LGBT legislation you are NOT an advocate for men’s health – period.
Mayan Prophecy
By · CommentsI’ve been thinking lately about the Mayan Prophecy (the world ending on 12/21/12). Apparently a lot of people believe that this end of days might actually be a global re-alignment in thought… whereas we have a whole world that is dominated by patriarchal masculine attitudes and behaviors, even in women, there might be a re-introduction of the feminine divine… where our collective thoughts are more balanced towards nurturing, compassion, and respect vs. well… domineering self-interested BS and the unhealthy variety of competitive attitudes that are born and fostered from that. Wouldn’t that be an interesting time? People making decisions and doing things more consciously in the interest of helping his or her fellow man/woman… might solve issues with healthcare… education… and I’m sure any number of humanitarian causes and interests. Sigh – time to wake up! Whatever that means…
Ryan O’Neal and Warren Buffet
By · CommentsTwo well-known celebrities were diagnosed with cancer this week – and each case illustrates the confusion that is indicative of the experience of cancer diagnosis in our broken medical system.
Ryan O’neal announced his diagnosis last Friday (4/13) stating that he has stage 4 prostate cancer, but has been given a “positive” prognosis because it was caught early. Stage 4 PCa is never a positive prognosis, and in all likelihood it was not caught early… if it was caught early that is one seriously aggressive cancer that is very likely well beyond hope for “cure.”
http://www.nj.com/entertainment/celebrities/index.ssf/2012/04/ryan_oneal_has_stage_4_prostat.html
On the flip side…
Warren Buffett, who announced yesterday (4/17) that he has been diagnosed with prostate cancer that is “not remotely life threatening.” At 81 years of age, he fits the profile of a patient who does not need treatment, eg, the treatment itself will likely do more harm than good and is very unlikely to prolong his life AT ALL. He does intend, however, to undergo 8 weeks of radiation therapy… http://www.washingtonpost.com/business/warren-buffett-has-prostate-cancer-that-is-not-remotely-life-threatening/2012/04/18/gIQAArzXQT_story.html
I wonder if Mr. Buffet would ever consider donating the thousands of dollars that will pay for his treatment which in all probability is unnecessary to help an underserved patient pay for a life-saving treatment that they can’t afford… he seems like a nice guy… maybe he will…
Fred Gersh Died Today
By · CommentsFred Gersh died earlier this morning, from the Prostate Cancer that he had been
fighting for many years. Fred was a friend and ally to Malecare. He spent much
of the last decade of his life as a prostate cancer advocate. I met Fred during
one of the many conferences we both attended. One day, several years ago, he
took my arm and asked me, “what is it about gay men…why does Malecare exit?”
That was the start of many conversations about LGBT life, history, sex and love
and prostate cancer. Fred was a genuine learner, and, during the last year or
so, I witnessed him as a teacher, sharing his understanding of the unique issues
that challenge gay men, to other advocates and survivors. More than once, he
would introduce me to one or another oncologist, telling them that they ought to
know more about gay men. Though clearly ensconced in the straight community,
Fred was an advocate for all men with prostate cancer.
The forest through the trees
By · CommentsIn December of 2011 the National Institute of Health (NIH) released a draft State-of-the-Science Conference Statement. The focus of the study was on PSA-based screening which has identified many men with low-risk prostate cancer. Over the past decade active surveillance has emerged as a viable option for men with low-risk prostate cancer. This represents approximately 100,000 men diagnosed in the United States each year. Despite the very favorable prognosis of low-risk prostate cancer, many men with low-risk disease continue to opt for or are only offered treatments such as radical prostatectomy or radiation therapy which can lead to side-effects such as impotence and incontinence in a substantial number of men. The NIH draft statement suggests that strong consideration be given to removing the anxiety-provoking term “cancer” for low-risk prostate cancer. This means that men who today would be diagnosed with low-risk prostate cancer would no longer be considered cancer survivors and would likely automatically undergo either Active Surveillance or Watchful Waiting (depending on age and other co-morbidities). This could also cut prostate cancer incidence in half.
Prior to this the U.S. Preventive Services Task Force (USPSTF) released a draft position statement based on their review of several large prostate cancer screening trials. The USPSTF, following a standardized protocol, developed an analytic framework to explore key questions such as: the effectiveness of PSA-based screening in decreasing prostate cancer–specific or all-cause mortality; the harms that may be set forth as a result of PSA-based screening; the benefits of treating early-stage or screening-detected prostate cancer; and the harms of treating of early-stage or screening-detected prostate cancer. Recommendations were based on 2 fair-quality and 3 poor-quality randomized trials of PSA-based screening. While study contamination makes accurate evaluation of PSA as a tool to find cancer early and thereby treat it more effectively almost impossible, these studies clearly demonstrate the devastating impact of overtreatment on men diagnosed with prostate cancer. This has resulted in the USPSTF draft recommending that PSA-based screening be ranked a D.
Other important studies indicate that under-treatment of aggressive cancer too is a major issue, even further reducing the effectiveness of early intervention. My question is – as patient advocates how and why are we unable to read between the lines? Wouldn’t it make sense to redirect attention to advocate for better patient education and decision support to prevent or reduce over-treatment, under-treatment, and mismatched treatment? Or I guess we could ignore these issues and focus on sending as many men as possible into a confusing and potentially devastating situation that might do little to support longevity or protect his quality of life…
NIH Conference on Active Surveillance Summary
By · CommentsPSA + big picture = Men’s Health Night
By · CommentsIt’s interesting to reflect on the recent USPTF PSA upheaval – and to consider how and why we are here from a position of compassion.
Personally, I’m interested and involved because my dad died of aggressive prostate cancer. He was screening – back in 1996 when screening was gaining momentum as a tool to find cancer early. The antiquated PSA threshold for a man of his age during that time period missed his cancer. He was in his late 40s (with a PSA of just under 4). His cancer was found several years later… only then it was too late for him.
Modern standards for PSA might have saved his life. Due to the nature of long-term data collection, the data considered by the USPTF simply can’t consider PSA use based on modern standards. So while screening may have saved my dad’s life had his results been considered using modern standards (such as age and race adjusted PSA or PSA velocity), his case is seen as a screening failure.
Another important consideration is how the PSA was pushed to market. Addressing prostate cancer is not JUST about the tests used to find cancer. In order for screening to yield maximum personal benefit, it must be considered as part of the big picture of men’s health. The disease grows relatively slowly when compared to other cancers, so knowledge about other co-morbidities such as heart disease and diabetes is extremely important in making sure the man lives a good long healthy life. A man who has his prostate cancer cured only to drop dead two years later of a heart attack probably did not benefit from treatment – eg, he was “over treated,” and usually irrespective of how aggressive his cancer was. Preventing other major causes of mortality in men is often as important as finding cancer early.
On top of this, men are often drawn to screening programs by the use of “scare tactics.” A man who shows up to get screened because he is afraid if he doesn’t he is going to die of prostate cancer is primed for really bad decision making should he ultimately be diagnosed with prostate cancer. Sometimes, maybe even often, the only factor guiding treatment choice is fear. Attempts to justify using fear to motivate any and all decision making often apply the ”at least he’s alive” rationale. This statement is often inaccurate and boldly insensitive… who can ignore the clear issues of over treatment and the sometimes devastating impact treatment can have on a man’s quality of life? To shrug off unnecessary suffering in any form is abominable - and the FACT that the tools are there to understand disease aggressiveness and manage side-effects – and often disregarded with the “tough it out” response of “at least your alive” is ridiculous…
A more accurate and humane approach to awareness might involve supporting the man who decides to screen as part of a bigger plan to take charge of his health. This might go a long way towards addressing the underlying issues that challenge our efforts to reduce prostate cancer cancer death and effectively address the disease.
As I light my blue light for this year’s Men’s Health Night (Monday, November 21, 2011), I do so for all of the men who have lost their live’s -and quality of life- in the name of ignorance and inhumanity.
11/8 – big policy day…
By · CommentsTomorrow is our last to comment on the USPTF draft recommendations for PSA.
Now – more than ever, please consider who you vote for and what they stand for… look deeper than peacock posturing and flashy promises. What has this person done for the people they’ve been responsible to in the past? Are they bought and paid for? And where do they really stand on the issues that matter to you? If it takes 5 minutes to vote – you’re not doing it right…