The term “standard of care” refers to a procedure or set of actions medical professionals generally undertake for patients facing similar circumstances, based on the formal consensus of experts. At times, as in the case of screening for testicular cancer, the clinical guidelines forming a standard of care are met with differing opinions, even opposition, from the professionals they are meant to guide.
Testicular self-examination (TSE) is discouraged based on a review of its benefits vs. harms by the U.S. Preventive Services Task Force, originally in 2004, and updated with an affirmation of its decision in 2010. That recommendation stands today.
Here, in an interview for UroToday, male health behaviorist Michael J. Rovito, PhD, CHES, FMHI, Assistant Professor of Health Sciences from the University of Central Florida and Founder/Chairman of Men’s Health Initiative, Inc., explains why TSE should be standard of care for the young men at greatest risk for testicular cancer, an argument he and his co-authors made in a recent article in the American Journal of Men’s Health.
Q: Testicular cancer is not a common form of cancer, but as you point out, its impact is great when one considers the potential for “years of life lost.” What are these estimates?
The average man in the U.S. lives to about 75 years of age. For prostate cancer, the average age at diagnosis is 66 years of age. Mortality with diseases such as heart diseases, prostate cancer—tends to occur in the 50s, 60s and 70s or older. The average age at diagnosis of testicular cancer is 33. [For these individuals] the potential for years of life lost could be as high as a half-century if we would assume the average age of death from testicular cancer is somewhere in the late 30s. To imagine potentially losing upwards of 30, 40, even 50 years of life is a very humbling concept.
Q: You and your colleagues—and the literature—indicate that there is knowledge gap among the young adult and adolescent men regarding this disease. Can you speak to what you found in this regard?
Some high-profile cases in the media have increased knowledge and awareness of testicular cancer, such as the case of Lance Armstrong, and Tom Green an MTV DJ in the late 90s, but these incidents haven’t really moved the needle in any significant fashion regarding making males more aware of the disease and taking consistent action to help prevent late-stage diagnosis.
In the 1980s, young men didn’t know about testicular cancer to any significant degree. [Awareness] was in the single percentages. In the 2000s, and in particular, nowadays, we are seeing from some studies indicating that 75% of sampled men have heard of testicular cancer. But studies examining awareness of this form of cancer are widely varied. For example, some studies report that 40% to 50% of men know about testicular exams. But even now, some studies suggest that 90% of men have not heard of testicular cancer. It really is all over the place.
For the most part, guys, even if they have heard of testicular cancer, they don’t have real knowledge about how to conduct a [testicular screening exam.. Again, to roughly summarize the literature, what has been reported is that about 50% of guys know about testicular cancer, maybe a bit higher. For testicular self-exams, maybe an average about 20% of guys know about it. If you ask how many guys actually do testicular self-examinations once a month, you’re looking at single digits. Even if they’re doing it, are they doing it properly? That’s another issue.
Q: Also surprising, it seems that there is a lack of unanimity regarding a standard of care for testicular cancer screening as well as what you describe as “ambiguous” published prevention and screening standards… Could you give an example?
There really is heterogeneity among the recommendations. Recommendations come from the USPSTF, the ACS, the AUA, among others. Some say we should be doing testicular self exams. Some say we should be doing physician exams. The Task Force, of course, indicates that we should not perform physical exams on testicles for testicular cancer prevention. Although the Task Force is not the last word on testicular self- examination, this organization has a strong influence on who recommends what. A recent study was published suggesting that prostate cancer cases have decreased recently not because of the disease just disappearing into the ether somewhere, but because physicians are not ordering PSAs for their patients due to its recent USPSTF D-rating recommendation.
The AUA Men’s Health Checklist and the ACS do endorse testicular self exams, but these recommendations usually come with a caveat—an asterisk—stating that the USPSTF “does not recommend regular testicular examination.” The Task Force has a lot of influence over the weight and consideration that is given to other recommendations for TSE. The Task Force recommendation is what is driving policy regarding this—purposely or not—as well as clinical practice.
Q: What is the essence of the U.S. Preventive Services Task Force argument is against TSE?
The argument boils it down to a “harm-benefit” corollary suggesting that the harms outweigh benefits. The harms are a potential increase in anxiety, and unnecessary invasive treatment. This argument has also been made about PSA and other preventive services. This is speculation to a great degree. On the issue of an increase in anxiety, and that testicular cancer mortality has not decreased because of TSE— there is no evidence that was ever measured. [And] I have not found a shred of evidence regarding a guy’s anxiety increasing because of a false-positive TSE.
I am sure anxiety will increase by feeling a lump on your testicle but it has never been measured and reported in the literature. On the other hand, studies actually do report on the influence of late-stage diagnosis and invasive surgery on anxiety and depression among cancer patients. Those are real numbers, not speculations.
Q: What constitute some of the arguments, or support, for TSE you have found?
What has been measured—hard evidence—[indicates] that knowledge and awareness of testicular cancer will increase if we intervene and tell guys about the test. Information empowers people. Guys become more comfortable with their bodies, and when this happens, they feel more comfortable discussing their issues with their primary care physician. There is a linking of evidence [suggesting] that if we inform guys about testicular self exams—increase their knowledge and awareness of it and teach the proper way to conduct the TSE, they become more comfortable with the process, and with their bodies. As their knowledge increases, and their comfort level increases with the procedure, anxiety lessens, and they are [better able to] speak with their physicians in an informed, decision–making manner. The more they learn, they more comfortable they become. The more comfortable they become, the more they will open up. This is something very positive to embrace.
Q: Another issue, I understand, is that men are less inclined than women to seek regular health care or to follow up.
After they leave their pediatricians, men typically disappear from regular medical care until they get married. Men don’t have yearly physicals per se like women do. We are from the ilk of “suck it up and be a man.” We know plenty of men just don’t know, or it doesn’t register with young adults, that they are mortal. That really is an issue with adolescent and young adult males in particular, and this is the highest risk group [for testicular cancer]—between the ages of 15 and 40. These are just the guys who are not going to the clinic. We have to get these guys interested in their bodies and comfortable discussing these sensitive issues.
Also, there is growing evidence that there are other uses for TSE--“off-label” use…something I and my team coined in one of our recent publications, where TSE is not just about testicular cancer discovery. You can discover hydroceles, varicoceles, and even use TSE to check for STDs, and skin checks to evaluate for warts or herpes…
Q: You and our co-authors urge a “re-defining” of a standard of care that is inclusive of TSE. Could you briefly summarize your proposal?
What we are saying is that the existing guidelines have been rooted in malpractice litigation. Standard of care should be really rooted in what is right for the patient. We are trying to say that we need to change the focus to what is best for the patient, not what is best to not getting sued. I understand that this is a very sticky situation, but ethics are ethics. From a public health perspective, beneficence (doing good for the patient) must primarily drive practice. In this circumstance what this is, is for young men to know about TSE and to regularly check their testicles. You can be cured of testicular cancer but you need to be aware of it in order to catch it early. The Task Force and their supporters suggest that survivorship is the premier outcome to assess. Surely, I agree. However, the quality of life measure needs to be factored into the mix. The correct message is that TSE is free; it’s easy; and doing it especially during men’s years of greatest risk of testicular cancer should be standard of care—what is best for the patient.
The correct message is that TSE is free; it’s easy; and doing it especially during men’s years of greatest risk of testicular cancer should be standard of care—what’s best for the patient.
But for some reason, the guidelines, in addition to being rooted in legal issues and limited scope…(saying it does not decrease cancer mortality In addition to cancer mortality, there are other outcomes we need to look at, such as quality of life… We need to redefine the standard of care—we are trying to say—going from the original idea of care of avoidance of litigation to a more patient-oriented focus of doing good for the patient. “That’s what it has to be rooted in as well as broadening the scope of the guidelines in terms, not just of survivorship, but quality of life. That is what we are rooting our argument in this…
How are you going about changing standard of care?
We are broadening our network with other authors and health practitioners around the country and the globe. We have to go the traditional route of publications, but we are also [undertaking] other unorthodox ways to get the message out there. Men’s Health Initiative, Inc., (MHI) a 501c3 nonprofit charity organization is leading the way for TSE promotion currently. MHI has partnered with the Testicular Cancer Society and Men’s Health Network—also advocates for preventive health among men and boys, inclusive of TSE. Finally, Dr. Michael Lutz’s efforts with the Michigan Institute of Urology and the Fight Like a Man International Collaborative are making some fantastic strides in the community to help bring about a truer sense of public health for all.
An interview with Michael J Rovito - Written by: Barbara Jones
Rovito MJ, Manjelievskaia J, Leone JE, Lutz M, Perlman D. Recommendation for treating males: An ethical rationale for the inclusion of testicular self-examination (TSE) in a standard of care. Am J Men’s Health. 2015. DOI: 10.1177/1557988315620468.