Do we need an “Awareness” Awareness Month? Or more giant testicles pushed cross-country?

A TIME magazine opinion column today asks, “When Is ‘Awareness’ Awareness Month? The timing of the column is excellent, coming, as it does, in the season of prostate cancer and breast cancer awareness campaigns, Pinktober and Movember et al. Excerpts:

” ‘Awareness’ is a virus that preys on well-meaning minds. It tricks us into thinking that thought is the same as action, that acknowledging something is the same as fixing it. Awareness is a problem masquerading as a solution. … Let’s raise awareness about the danger of empty ‘awareness.’ Let’s spread the word about only spreading the word.”

One of the examples raised in the article is this:

“Look at the new testicular-cancer-awareness #FeelingNuts campaign, which was recently endorsed by Hugh Jackman when he tweeted a picture of himself holding his own (clothed) balls. The scrotum-squeeze has gone viral, but how much money has been raised to fight testicular cancer? It’s hard to tell, because the campaign doesn’t require any kind of donation, unlike the ALS Ice Bucket Challenge. And there’s no evidence that the thousands who take pictures of themselves holding their balls are doing any kind of actual screening– they could easily be using the campaign as an excuse for a crotch-grab selfie.”

Just last week I heard about a cancer survivor pushing a massive testicle across America. It’s described as “an attempt to raise awareness of testicular cancer.”  His is an awful story of a terrible cancer.  But there are important facts people are not likely to hear in such awareness campaigns.  For example, on his website, the ball-pusher writes:

“The best way for men to be proactive is to do a monthly self-exam of their testicles to check for lumps, hardness or swelling. It’s easy to do in the shower.”

From Mr. Ballsy’s Facebook page

But the National Cancer Institute states:

“No studies have been done to find out if testicular self-exams, regular exams by a doctor, or other screening tests in men with no symptoms would decrease the risk of dying from this disease. However, routine screening probably would not decrease the risk of dying from testicular cancer. This is partly because testicular cancer can usually be cured at any stage.”

And the NCI reminds people that there can be harm from such screening; it can lead to unnecessary diagnostic testing that may introduce its own cascade of harms.

The US Preventive Services Task Force recommends against screening for testicular cancer in adolescent or adult men. The group states:

“Screening by self-examination or clinician examination is unlikely to offer meaningful health benefits, given the very low incidence and high cure rate of even advanced testicular cancer. Potential harms include false-positive results, anxiety, and harms from diagnostic tests or procedures.”

In a nutshell, the unfortunate story of one man’s cancer doesn’t mean that all men need to start checking themselves – or being checked – for the same problem.

I can hear it coming already – people writing, “Well you didn’t lose a loved one to testicular cancer or you wouldn’t write this.”  Don’t.  I’m not going to respond.

It’s not me dreaming this stuff up:  it’s what evidence-based experts wrote.  Look again at what I posted above.

If you want to ignore the evidence and push a ball across America, or test your own in the shower, have at it.

But in promoting awareness, we should promote accurate, balanced and complete information as well.

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Comments (1)

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Mike Craycraft

October 7, 2014 at 11:00 pm

Hi Gary,

Thanks for your post but I think you may have missed something in the process. If you read above the US Preventive Services Task Force (USPSTF) has indeed recommended against testicular clinical exams. They have given them a (D) rating indicating that “there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits.” However, it perhaps appears that you, as well as many others, have taken to this rating without actually questioning their methods.

Unfortunately, the USPSTF has inappropriately made this rating and continues to fail in correcting it. They also have an (I) rating meaning “current evidence is insufficient to assess the balance of benefits and harms of the service. Evidence is lacking, of poor quality, or conflicting, and the balance of benefits and harms cannot be determined.” If you read your own comments from the NCI you can see that there are no studies on mortality reduction from screenings. Given the large nature of such study needed to show a reduction in mortality this kind of study will never be done. Thus, the USPSTF should be making an (I) rating as there is no data. The Cochrane Reviews have also validated this lack of useful data.

What we do recently know is that data presented this year shows the cost effectiveness of self-exams. It is also obvious that early stage diagnosis carries a much lower treatment burden that reduces financial impact and has less affect on quality of life that higher treatment burdens. One also has to keep in mind that the USPSTF has to make recommendations for all men in general and not many people would argue that the need for a 70 year old African-American male to do self exams is negligible while the need for a 25 year old Caucasian is much higher. Transcrotal biopsies have been condemned years ago so there are no invasive procedures that are done to investigate a man presenting with an abnormal self-exam. The men simply undergo a scrotal ultrasound, which is cheap and doesn’t even involve radiation exposure seen in other medial imaging. Indeed a very small number of men may have an orchiectomy that does not reveal cancer due to an abnormal ultrasound but those data are also not known. Anecdotally, I have only met a few guys that this has happened to and they have had other physical abnormalities, such as testicular infarctions, that very well may have affected the future health of the testicle anyway. Testicular exams are also not just for cancer but to make one more aware of their bodies and educate them to have less resistance on seeing a doctor if they feel that something is wrong.

What we do know, in our recent surveys both in Ohio and repeated nationally, is that in guys age 18-34 only 26-27% indicate that they know how to do a self exam. In separate surveys, we asked guys age 18-34 to indicate who had spoken to them about testicular cancer and gave them the multiple answer choices of their: doctor, parent, high school teacher/nurse, college professor/nurse or sports coach; but 71-72% indicated that none of these people had spoken to them so more awareness is definitely needed.

I am more than happy to provide you with any sources to back up the data I have presented.

Thank You for Your Time.
Mike Craycraft R.Ph.
Survivor/Founder
Testicular Cancer Society