I was diagnosed with Stage IIB Nonseminoma cancer in November 2016. It's a form of testicular cancer that spread to my lymph nodes. I had surgery to remove the original mass and my affected testicle on October 28th, started chemotherapy on November 28th to get rid of the remaining cancerous cells, and completed it in January 2017. In March, my doctor told me I was in remission, and as of my latest scan in June, I still am.
As a men's health activist and testicular cancer survivor, I know a ton of facts and figures about testicular cancer. Unlike most men though, I knew about testicular lumps and that they were a bad omen. Ninety percent of the time, testicular cancer presents as a lump in the testicle. A lump in the testicle can be detected early through regular self-exams.
Testicular cancer is not talked about enough in society. My hopes are that sharing my story from beginning to end with an open attitude will stimulate more open discussion and bring a larger focus to men’s health in general.
How to advocate for testicular exams and testicular health as a patient.
When you’re at your next physical, ask for a testicular exam. Be outright pushy about it if you need to - afterall, you’re probably paying a copay and/or insurance premiums; might as well get your full money’s worth. Ask that the doctor performs testicular exams on all of his male patients. No man is immune from developing testicular cancer.
If you’re unsure about how to do a self-exam, ask your doctor (or check out ABSOT’s self-exam page).
Encourage him to discuss it with all men. Share this blog post and results of the study with him.
Be sure to tell your friends, brothers, fathers, and other assorted cast of male characters in your life about this. If doctors and others begin hearing the importance of testicular exams more often, it’ll become second nature to dedicate a decent amount of time to this vital task instead of treating it like a checklist item to gloss over.
There’s another area of focus to consider here.
One thing that always shocked me was when men apologized to me for answering "no" to any of the questions about doctors physically examining testicles or discussing the proper technique for self-exams and how often they should be performed.
In this study, the only question that respondents have control over is when they most recently attended a physical. 68 percent of men had attended a physical in the past year, showing an eight percent increase compared to findings from a 2016 Cleveland Clinic study.
Answering no to any other question is something that lies in the hands of the doctor (or, as in the case of roughly half of the respondents, does not lie in the hands of a doctor).
I Asked 550 Men, "Do Testicular Exams Happen at Your Annual Physical?" Survey Says...
About 51 percent of men said their doctor physically examined their testicles, while 42 percent said they did not have an exam done, and seven percent could not remember. (I feel like this is something most people would remember, but hey - to each their own.)
While those figures are dismal, responses to the next two survey questions are worse. 78 percent of men reported that their doctor did not teach them how to do a testicular self-exam, and six percent said that they didn’t remember, which is effectively a no in my book. Similarly, only 11 percent said their doctor told them how frequently to do a self-exam.
Of the 550 respondents, 87 percent of the men were in the 15-50 years old range. This is great, since 50 percent of testicular cancer cases occur in men ages 15-44. The remaining 13 percent were either above 51 or below 14.
In the survey, there was an optional, open-ended section where people could share their own comments. These were some of the more interesting ones:
- “Never had an exam by a doctor and I am 60.”
- “I haven’t had the doctor warn about testicular cancer or been told to do self exams since the age of 12....” (This respondent was in the 21-30 years old range.)
- “I have since asked my GP for a physical and he downplayed its importance, declining to do one as I am young and it's probably not necessary.” (This respondent was also in the 21-30 years old range, also known as the high risk age range.)
- "I was told I was no longer in the high risk age range and didn't need a testicular exam.” (This respondent was in the 31-40 years old range, which is still considered high risk.)
- “I've had a physical every year for the past 9 years and only once has a doctor done a testicular exam on me. The last visit was with a female nurse practitioner and she apparently didn't want to get that personal. She simply asked, ‘Are you having any problems with your male parts?’”
- "I just turned 40 this year and have only had my testicles examined two times in my entire life. Once was for a sports physical in high school and [I didn’t receive one] again until 2015 when I was mentioning testicular atrophy/shrinkage. I just had my physical for 2018 and my (male) physician was actually embarrassed when discussing men's health issues and asked if we could skip the testicle examination. This was at freaking Cornell in NYC."
For a full breakdown (including each question by age range which shows a trend of less positive results as men age) and further analysis, click here.
To learn more about the development and backstory to why I did this study, check out this piece I wrote for Cure.
Beyond sharing with guys who are at risk for testicular cancer, this information needs to get into the hands of medical professionals as well. Now that this study is complete, I plan to reach out to doctors/medical students to share my findings, ask them to change these points, and help spread the practice as widely as possible. Now that we've cracked open this nut of an investigation, the ball is in your court.
This study was not reviewed by an IRB and should not be considered a formal research study. Since this study was based on men’s recall, there may be some inaccuracies in what occurred versus what was remembered.
An earlier version of this post originally appeared on Justin's Blog A Ballsy Sense of Tumor
Cover Image courtesy of Unsplash.