Testicular cancer is the #1 cancer for men ages 15-35. Think of how young that is: high school boys and men with young families. They’re not even in their primes.
Now think about a testicular self-exam (TSE) that you can do yourself. It can reveal lumps and changes in your testicles that might be malignant. It’s free and painless. You should do it every month in fact, ideally after or in the shower.
Action
Now think about a group of physicians—clinicians—who study diseases and make recommendations that primary care physicians (PCPs) tell their patients to do. You know how your PCP says to take an aspirin to help prevent a heart attack if you’re a man, aged 45-79? That piece of advice comes from this group. It’s called the US Preventive Services Task Force (USPSTF). They are 16 volunteer preventive medicine and primary care clinicians who are “experts in prevention and evidence-based medicine.” They weigh benefits against harms based on evidence. They are authorized and directed by The Agency for Healthcare Research and Quality, which is one of twelve agencies within the United States Department of Health and Human Services.
Back in 2004 the USPSTF recommended against using TSE either at home on yourself or in a clinical setting by your doctor if you have no symptoms of testicular cancer (TC). They gave it a grade of D. They felt that the harm outweighed the benefit, the harm being that it caused anxiety. Furthermore, they reasoned, there is no evidence or clinical trial showing that TSE decreases death from TC. In protest, one study said “A lack of evidence of benefit is not the same as evidence of a lack of benefit.”
Nevertheless, the USPSTF reaffirmed that recommendation in 2009 and again in 2011.
Reaction
The medical community strongly reacted against this grade of D. One group wants it changed to B. They point out that even the USPSTF reported that testicular cancer is not believed to be preventable. Furthermore, early detection leads to a high cure rate.
In a scalding assessment of the USPSTF’s logic and methods, another group wants D revised to I, meaning the evidence is inconclusive as to whether benefits outweigh harms. They cite “the spurious nature of the data used by the USPSTF to discourage [testicular cancer] screening, as well as the inconsistencies in methodological rigor used to create its current ‘D’ grade recommendation.”
This gives you a sense of the outrage.
And outrage has caused the USPSTF to reassess their recommendations in the past. In 2009 the USPSTF recommended against routine screening mammograms for women 40–49; for women aged 50–74 the task force reduced the recommended frequency from annual screening to screening every other year. Prior to that, the USPSTF had recommended routine screening at least every two years for women aged 40–49 and annual mammography for women aged 50 and older.
Again, there was outrage and outcry from the medical as well as from the patient communities. In 2016 the task force reaffirmed its recommendation for women 50-74, but for women younger than 50, they softened the recommendation: they said it is an individual decision and women should weigh the benefits against the harms.
Interestingly, the Department of Health and Human Services went all the way back to the 2002 for its recommendation on breast cancer screening. DHS recommended screening mammography, with or without clinical breast examination (CBE), every 1-2 years for women aged 40 and older.
Result
So a lot of groups just ignore the USPSTF’s recommendations. Some of the organizations promoting the testicular self-exam include pediatric practices, Mayo Clinic, John Hopkins Medicine, American Cancer Society, Mount Sinai Hospital, public health departments (Alabama, Orange County, CA, Genesee County, NY, Illinois), Testicular Cancer Society, Cincinnati Children’s Hospital, British Association of Urological Surgeons, Bahir Dar University in Ethiopia, Health insurance companies (Cigna), Cambridge University Hospitals, Testicular Cancer Canada, Brown University, and New York Presbyterian Hospital. These are all well-regarded and prominent institutions.
The USPSTF saying don’t use TSE and other healthcare institutions saying do use TSE creates misunderstanding and frustration for patients. As you have seen, it creates outrage for the medical community. Furthermore, disregarding a prominent advisory group is not something that most clinicians want to do. It is a bad situation and perhaps could be improved with a groundswell of protest from patients, much like what happened with the mammogram controversy.
Meanwhile study after study promotes TSE, especially since TC rates are increasing worldwide. In 2011 Nigerian scientists advocated for TSE training by healthcare providers, especially because early detection increases cure rates to about 95%.
Unfortunately, this mixed message about the testicular self-exam goes hand in hand with widespread lack of knowledge about TC.
Knowledge vacuum
A 2017 study in Northern Ireland recruited 150 men aged 18 to 45 from across the country and asked them about their knowledge of TC. Scientists found that “While 39% of respondents correctly identified the age group at highest risk for testicular cancer, only 17% of respondents had ever heard of a testicular self-examination.” They urged that “health promotion initiatives to engage men and raise testicular cancer and self-examination awareness” be started.
A Nepalese study in 2021 surveyed 402 male students getting bachelor’s degrees about testicular cancer and testicular self-exam awareness. The study found that the majority, 56.7%, had poor knowledge of TC. Only 11.4% had performed a testicular self-exam.
A Polish study in 2020 looked at cancer knowledge, awareness, and self-examination among young Polish men and found disturbing results. Because “the highest incidence rate [of testicular cancer] was recorded among Caucasian individuals and in Nordic countries, where the incidence rates of TC were tenfold higher compared to the Asian and African populations” it was important for the study’s authors to know their population’s awareness of these grim facts. Another revelation was that “young males are unaware of being in the age group, 15-35, most likely to acquire TC.”
The study didn’t stop at only recommending increased awareness among young men. It made recommendations about the type and quality of awareness campaigns. It said “to increase men’s response to programs enhancing men’s awareness of TC, all interventions should be brief, catchy, and visually stimulating with technology involvement.” And “the most effective education programs on testicular self-examination should match the age and the educational level of the recipients.”
It said “National efforts at increasing awareness such as Movember are good.” Movember is a combination of November and mustache. It’s a worldwide organization aimed at education, prevention, and awareness of “mental health and suicide prevention, prostate cancer and testicular cancer.”
The lack of awareness of testicular cancer among young men spans the globe.
- Only about 42% of Portuguese male respondents indicated to the most common TC signs and symptoms correctly.
- Less than 30% of Irish men properly recognized the first symptoms of the disease.
- A lump in the testicle was identified as a symptom by only approximately 10% of Nigerian males.
These dismal facts stand in ironic contrast to another fact: “It is estimated that approx. 90% of both benign and malignant testicular pathologies are detected by males performing regularly self-examination.”
Yet “TSE is regularly performed by 2% of young men in Denmark, 1.9% of young males in Turkey, 8.5% of males in Iran, 12.3% of male students in France.”
Late-stage profiles
So far, we’ve been talking about early-stage cancer detection, the kind with the 95% cure rate. Not everyone is in that category. A 2018 study reported that the survival rate “dips to 70%–75% in more advanced-stage diagnoses (greater than Stage III). Treatments for late-stage TC are “invasive treatment options (i.e., orchiectomy [testicle removal], retroperitoneal lymph node dissection, radiation, and/or chemotherapy).” Not surprisingly, “prevalent conditions within the TC survivor population, especially among late-stage survivors” are “Physiological complications, such as infertility, peripheral neuropathy, cardiovascular disease, and long-term pulmonary and neural toxicity, as well as psychological conditions, such as chronic fatigue, anxiety, fear of recurrence, and depression.”
The authors of this study reported that “uninsured and underinsured males are at substantially higher risk of late-stage TC diagnosis, with education status, family income, and provider trust serving as sizable effect modifiers.”
It further points out that studies suggest “that Latinos will have the highest TC incidence rate of any racial/ethnic group by the year 2026.”
Off-label TSE
But the testicular self-exam is not just for testicular cancer anymore. Many researchers point out that “TSE is known to have benefits beyond detecting cancer, most notably benign testicular disorders, hernias, certain sexually transmitted infections (e.g., genital warts), among other health issues.”
Other researchers call these efforts “off-label” usage of TSE: “we propose that the behavior can serve as a tool not just for detection of TC, but other male-specific urogenital health concerns, including varicoceles, hydroceles, among others.” Indeed, the ’off-label’ uses of the procedure make for an effective means to promote testicular health, self-awareness, and wellness among males.”
Looking ahead
The Polish study concludes that “teachers have to improve their teaching methods by implementation of . . . simulation techniques, clinical cases, or problem-based teaching.”
But both clinicians and patients must take responsibility and change behavior. PCPs, pediatricians, and urologists should begin serious and structured presentations of TSE. Patients should learn and use TSE, even if the doctor doesn’t talk about it.
Men’s health must be brought forth as an urgent and legitimate issue, in the same way that other health campaigns, such as smoking or seat belt use, were promoted and made effective. This action, if it comes to realization, has the potential to increase men’s knowledge of their own bodies, improve men’s health, and create a lot fewer widows than we now have.