Over the past few months hospital support for community screening events has markedly deteriorated. The harsh truth of the overtreatment epidemic brought about through the indiscriminate application of mass screening can no longer be ignored, leaving the only reasoning for support of such events (outside of a research setting) being marketing for urology practices. BTW – a man can have this test administered by a primary care doctor, he just needs to ask for/insist to have it…
This turn of events is a striking wake-up call to just how backwards prostate cancer care is. It cries for diagnosis with little or no concern for what happens to a person after diagnosis. Men are often treated with little regard for other co-morbidities, despite how aggressive their cancer is or is not, and with discussion about the reality of treatment related side-effects being superficial at best. Yet another reason to work with a primary care MD to assure any news of diagnosis is delivered alongside the seriousness of other co-morbidities and information about side-effects.
The problem is so strikingly pronounced that over 100,000 men have been unnecessarily treated every year resulting in billions in unnecessary medical expenses. Because nothing has been done about this, nothing to improve the quantity and quality of life for survivors, the public health powers that be do all they can to shut the door on PSA.
It is fundamentally tragic to see so many “advocates” throw in the towel, or dig in their heels in a desperate and irrational argument for maintaining the flow of men into a medical system that we know has monumental shortcomings. These pitfalls necessitate a level of self-awareness, ability to quickly understand complex prognostic data, and a calm cool mind to navigate the many trap doors in the world of prostate cancer care.
Discarding the PSA will result in men like my dad are discarded in the interest of preserving the quality of life of the masses. The “good of the many” so to speak… And in all of this, all that is really needed is a little compassion for those men who have been subjected to over treatment and now live with side-effects for no good reason – AND those men who will die of aggressive prostate cancer diagnosed too late…
Over the past few years, I’ve been taking a hard look at mass screening programs. Educational surveys showed that almost 40% of participants believed screening to be preventive in that they would actually prevent prostate cancer – that they could stop it from happening, like a vaccine – by screening. Over 85% believed abnormal screening results to be a definitive cancer diagnosis. This, coupled with overtreatment of men with the resources to pay for care – many of whom take advantage of 3-5 free screening events per year on top of the screening they receive from their primary care MD, and the apparent disinterest in caring for underserved men picked up at a mass screening “event” compound my unsettling feeling about these nobly rooted efforts.
In sharing these concerns with a good friend, the issue of screening underserved men came to a head for me as I realized how few of those of us who are comparatively privileged understand life of destitute and homeless persons. The comment that resonates with me is “even if they receive no treatment, they get more from these events than they are you used to – someone is touching them.” Anyone who believes that it is extraordinary for a homeless man to have a needle placed in his arm, or to have his intimate body parts invasively “examined” is just a tad delusional… If that is in fact our intention, why don’t we sponsor chair massages for these guys? Isn’t that a whole lot less weird than screening them without treating any disease that is found – and if treatment is provided, leaving them to figure out how to manage the side-effects associated with treatment all on his own with no resources?
Where is compassion and empathy in all of this? We really need to back up and advocate for education and holistic care for those with limited resources…
Earlier this year my mom was in a terrible care accident. She miraculously survived with multiple fractures. Were this to have happened to most women her age they would have been a pile of bone dust.
In the hospital after the accident they set what bones they could and attached an external fixater on her leg. The staff at the hospital said that in a few weeks they would remove the fixator and surgically install a plate in that leg. The hospital experience was terrible and dangerous. I had to constantly monitor staff to assure they didn’t give my diabetic mom and IV drip with sucrose in it – which happened no less than three times. After a few days my mom was moved to a rehab facility. In transition, the hospital forgot to write a prescription for blood thinners (a standard of care for bed ridden patients) and mistakenly documented her status as weight bearing. She couldn’t even sit up or role over.
About ten days later my mother’s legs were filled with clots. This is extremely dangerous. If a clot breaks free it can cause a stroke or a heart attack. So they dosed her up with a lot of blood thinners, I prayed and made sure the staff at the facility would watch her like a hawk anytime I couldn’t be there.
So the day arrived for the appointment when she was to have the plate placed in her leg. My brother was here visiting from Indonesia, so he rode with my mom in the ambulance while I drove so I would be able to pick my son up from school after the appointment. When the young physician entered the room and asked how we were doing my mother said “great all things considered, just here to get the plate put in.” He asked “are you having problems with the fixator?” We responded by letting him know that this is just we had been told in the hospital. My brother and mother immediately began rationalizing how and why a plate would be better. It might “strengthen and fortify the bone.” The doctor responded with a hedging “I don’t know, maybe, but if that is what you want to do, we can schedule your for surgery.”
Because of what I do (advocate for cancer patients), I’m very sensitive to how dangerous and destructive making “more is better” blanket assumptions can be in respect to healthcare, and especially in situations that might feel acute. So I say, “wait a minute, let’s really think about this. You will have to stop taking blood thinners prior to surgery – and your clots have just cleared up, spend another night in the hospital and we know that can be dangerous, undergo anesthesia, also dangerous, and sustain injury – because there is injury imposed during surgery, and this will inevitably prolong your healing. So if there is not in fact a benefit to having this done, I don’t think you should do it.”
The doctor excused himself for about five minutes returning with a recommendation against surgery due to my mother’s status as having diabetes, high blood pressure, and having been a smoker until just prior to the accident.
A few weeks later at her next follow-up appointment my mother was complaining about the fixator and lamenting that she hadn’t opted for the plate. On this day we were seeing a very seasoned doctor with much more experience than the last. He informed us that removing the fixator was the absolute worst thing that could’ve been done. The bone had broken clean at the top and the bottom of her shin, and shattered like a windshield in between the two breaks. By some miracle no bone had separated from the shattered break, and to open up her leg and start playing around with that might have left her crippled and in even more pain than she will be in for the rest of her life.
The lesson – ask questions and be educated and informed. Doctors hedge at a patient directing his or her own care as they fear litigation if they say no over what on the surface may appear to be choice. All too often they are only enabling a fearful reaction to a situation that the average lay person is just not used to.
This comedy of errors I think is more illustrative of healthcare today than most of us would like to believe. Overtreatment and inappropriate treatment is probably epidemic in respect to a lot of health related situations. However, undertreatment too can be a problem. We have got to be able to trust our doctors to weigh the long-term data and marry that with their clinical expertise while we strive to be informed educated advocates for our own care. If we fail to do so, the results could be catastrophic.
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.”
Just 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.
What 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.
I’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…
Two 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.”
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 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.
In 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…