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…
USPTF guidelines – please help!
By · CommentsPlease submit your comments to the USPTF. We need 30,000 by November
http://www.uspreventiveservicestaskforce.org/uspstf_form3/
Topic 3, Multidisciplinary Care
By · CommentsThis particular topic may be the most important. A few have tried to put the discussion about its importance on the table (ref. this document published by the AUA back in 2005), but perhaps old habits die hard?
General cancer conferences are mandated by the Commission on Cancer (CoC). You can’t be a community cancer center without offering this service to your local medical community…
And… you can’t be a Breast Cancer Center of Excellence without offering a multidisciplinary breast conference to your local medical community!!! This is not only listed as criteria, but specifically referenced in two other sections listing guidelines for being a Breast Center of Excellence:
Standard 1.2 Interdisciplinary Breast Cancer Conference
The BPL establishes, monitors, and evaluates the interdisciplinary breast cancer conference frequency, multidisciplinary and individual attendance, prospective case presentation, and total case presentation annually, including AJCC staging and discussion of nationally accepted guidelines.
Standard 5.1 Breast Center Staff Education
Professionally certified/credentialed members of the breast center participate in local (in addition to breast cancer conference attendance), state, regional, or national breast-specific educational programs annually.
Standard 6.1 Quality and Outcomes
Each year the breast program leadership conducts or participates in two or more studies that measure quality and/or outcomes and the findings are communicated and discussed with the breast center staff, participants of the interdisciplinary conference, or the cancer committee, where applicable.
This particular guideline is a hinge for supporting excellent care…
Multidisciplinary care can take various forms, from the (usually day long) multidisciplinary clinic experience now commonly seen at most National Cancer Institute (NCI) accredited research centers to the community cancer conference. The NCI clinic model is difficult (though not impossible) to translate into a community cancer center environment: http://www.presbyterian.org/_media/local/docs/services/accc_prostate.pdf
The challenge is that most urologists are private practice MDs, though frequently using their local community cancer centers for surgical space for performing radical prostatectomies and the like. Surgery in many cases has become the “de facto” front line, and sometimes surgery as a primary treatment is clearly the right option… but important questions need to be asked in order to know this for sure – and these questions almost always benefit from discussions that involve a radiation oncologist, medical oncologist, pathologist, radiologist, and even (and often most importantly) the man’s primary care doctor.
A couple of years ago a pilot for establishing a “grassroots” parallel to the STANDARD CoC breast conference was initiated out of this meeting: http://www2.nbc17.com/lifestyles/2009/sep/10/prostate_cancer_coalition_of_nc___social_changes_i-ar-284910/
This model is incredibly simple, and it works…
Monthly, Rex Cancer center hosts a genitourinary (GU) multidisciplinary conference at the same time that the local anesthesiologists meet (you can’t perform a prostatectomy on a conscious patient 
). Prostate cancer cases are most predominantly discussed, though there is often enthusiastic discussion to support care of patients with testicular cancer, renal cell carcinoma, etc. (within a community cancer center, the same team of doctors that treat a prostate cancer patient treats these other forms of cancer, so the GU model is much more adoptable in a community cancer center environment).
So the question is… as advocates… would it make sense to join forces with advocates of other types of GU cancer to see if we can’t get some GU Center of Excellence guidelines established by the Commission on Cancer?
Topic 2, Prostate Conservation
By · CommentsOver treatment is the big issues thrown out there in any discussion about why men shouldn’t screen. So a couple of years ago the concept of Active Surveillance began to gain broader conceptual adoption. It’s generally considered to be a good smart option for maybe as many as half of men who are diagnosed, provided they adhere to diligent follow-up to assure that their cancer remains to be classified as “low-risk.”
The trick is, a combination of the anxiety provoking word “cancer,” coupled with little or no broadly available (eg, mainstream, generally available in MD practices) unbiased and easily understandable resources for understanding key prognostic factors (eg, the evidence-based data that helps you understand just how aggressive your cancer is) slow adoption of this important treatment option… even to the extent that a promising research trial on the subject was recently closed due to failure to accrue (recruit patients to participate).
So here is my CoC breast parallel idea #2:
Standard 2.3 Breast Conservation
A proportion of at least fifty percent (50%) of all patients diagnosed with early stage breast cancer (Stage 0, I, II) are treated with breast conserving surgery, and compliance is evaluated annually by the BPL.
POSSIBLE PARALLEL PROSTATE GUIDELINE…
A proportion of at least fifty percent (50%) of all patients diagnosed with low-risk early stage prostate cancer (PSA < 10 ng/mL, no lump felt on DRE, PSA density < 0.15, PSA velocity < 2 ng/mL/y, biopsy cores positive < 34%, and gleason score < 7) choose to undergo an Active Surveillance protocol.
See… what this does, is forces the issue of frontline pre-treatment education and support… because without that, you probably won’t be able to illustrate to at least 50% of low-risk men the costs vs. potential benefits of Active Surveillance.
Another possibly beneficial idea that might be somehow attached to this concept… could appropriate counseling at diagnosis provide a potentially monumental public health benefit if that cancer diagnosis anxiety is managed in part by taking charge of overall health re healthy lifestyle changes known to reduce risk of heart disease, diabetes, etc. in order to control low-risk cancer and reduce odds of having to progress to a more aggressive treatment modality?
Topic 1, preparation, recovery, and reconstruction
By · CommentsWithout getting into any details about side-effects, from what I understand, a lot of prostate cancer patients experience them, and many exit treatment feeling unprepared for the physical and psychological burden associated with them.
What’s worse, some “don’t want to talk about them” even to the extent of living with side-effects for years without being aware that there are sometimes recovery options available.
Is this really any wonder? Someone is told they have cancer… big cloud of white noise, and the words “potential for cure” are thrown in there – of course cure sounds more important than side-effects… then the guy goes home with his surgical or radiotherapy appointment(s) on the calendar – he still has a few weeks to “think about it and do some research” so he goes online and starts looking for unproven treatments that claim to be “side-effect free…”
Now let’s be sure to note that side-effects from the past decade’s shiny new wonder treatments (HIFU, Chryotherapy, proton therapy and the like) are showing up more and more…
So… he then either decides to go with proven approaches that have years of solid data to support their use, along with the data re side-effects and treatment failures… or to undergo some new/experimental approach (hopefully within the context of a clinical trial so he can contribute to future improvements and moving promising approaches to care into the arena of general care)… and irrespective of choice, sooner or later he will usually experience some sort of side-effect…
He might not complain because in his mind the doctor saved his life, and bringing up side-effects just seems petty…
Well – here is my first idea for how we might take a lesson from the breast cancer patient advocates on this issue…
Some of you may have heard of the Commission on Cancer. This accrediting body basically provides a stamp of approval on cancer centers that have programs in place which “focus on the patient.” These are NOT about technology… they’re about thoughtful little quality check points that support good patient care.
Needless to say:) breast cancer has its own special set of guidelines specific to those diagnosed with breast health issues…
A few jump out as having a possible “prostate parallel” that could have a monumental impact on patient care. Regarding the above… here is one of them…
Standard 2.18 Reconstructive Surgery
All appropriate patients undergoing mastectomy are offered a preoperative referral to a reconstructive/plastic surgeon. Reconstructive surgery is provided by or referred to reconstructive/plastic surgeons that are board certified or in the process of board certification. Compliance is evaluated annually by the BPL.
POSSIBLE PARALLEL PROSTATE GUIDELINE…
All appropriate patients undergoing prostatectomy or radiation therapy are offered a preoperative referral to a medical professional specializing in recovery for advice on treatment preparation and recovery options (such as biofeedback therapy, assistive technologies, medications, etc.).
The idea is, when presented this information within a focused interaction, the man if far more prepared to generally take charge by being physically and psychologically prepared… and is better aware that there are options for dealing with side effects.
Anybody have any thoughts?
Happy Breast Cancer Awareness Month!
By · CommentsOver the next few days, in honor of breast cancer awareness month, I’ll attempt some interesting and non-funding related “analogies” where parallel programs to some surprisingly cost effective and simple, yet currently non-existent, cause components might be developed for prostate cancer. These ideas might improve patient quality of life, screening effectiveness, and advocacy in general.
is more awareness really what we need?
By · CommentsI’m going to go ahead and answer that with a big YES! But with the caveat that the breadth and scope of our awareness has to expand if we have any hope of ever comprehensively addressing the issues that surround this awful disease. Knowing it’s there does scarcely little good with no clear path for how to deal with it. The politics of medicine does a great job of confusing people away from diagnosis altogether (which “may be” a death sentence for some… see how politically correct I am!!!), and for those that make it through, the business of medicine quickly follows suit with flashy widgets and toys to entice the newly diagnosed man into the latest and greatest technological wonderland of treatment. Humanity and compassion is a complicated thing – and one that most men don’t like to run around saying they need. After 15 years of trying to figure these things out, I’m absolutely convinced that across the board that is exactly what we need.
Be sure to light a blue light of compassion on Men’s Health Night (11/21/11)! And don’t forget to sign the petition to ask our White House to do the same if you haven’t already done so: http://prostatecancerblog.org/?p=351