The lack of education on testicular cancer can led to delays in diagnosis and treatment that could result in more intense treatment to cure the disease or even compromise our chance of cure. Although testicular cancer is rare, it is a disease that providers and patients should still be aware of, says Bradley C. Leibovich, MD, FACS.
In this interview, Leibovich discusses why patients with testicular cancer fail to seek treatment and what urologists can do to make them feel more comfortable to express concerns related to their testicles. Leibovich is the David C. Utz Professor of Urology at the Mayo Clinic and a medical director at the Mayo Clinic Center for Digital Health in Rochester, Minnesota.
I don't know that I would say that there's a stigma around testicular cancer, in fact, because testicular cancer affects primarily young men and since there have been some prominent athletes who have had testicular cancer.Most often testicular cancer occurs in the late teens to early 30s but there is a second peak in the 50s and 60s. One of the problems with testicular cancer is a delay in diagnosis, because many of these young men have concerns about body image, about masculinity, [and] about the fact that it's a reproductive organ which they might be embarrassed to discuss. Delays in diagnosis are not good in terms of our ability to treat the disease, the longer the delay in diagnosis, the more likely somebody is to present with advanced stage [disease]. Even though we cure virtually everybody who has testicular cancer, the amount of treatment that somebody needs to achieve that cure is greater, and the side effects of treatment are greater the later people present. Although we cure most patients, we don't cure everybody, it's much easier to cure people at early stage than at later stage. So, again, I'm not sure I would call it a stigma, but I do think we have a big issue with education of young men around things like testicular self-examination and about the fact that it's okay to let us know if you think something's not right.
I think the first thing that patients and providers that are not urological providers need to know is that any man that thinks there's something not right with their testicles should go see a physician immediately. One of the problems that we have with testicular cancer is men are aware that there other causes of swelling in the testicle or even pain in the testicle, and they will often assume that it's not testicular cancer, or don't even know that testicular cancer is a thing, denial of the possibility of malignancy results in some significant delays in diagnosis and treatment. Testicular cancer is quite rare, with only maybe 8000 or 10,000 new cases per year in the United States, so the same issue occurs with providers. Most primary care providers won't see a testicular cancer patient more than a few times, if ever, in their entire career, so it's not something they're familiar with. I think the first thing is to educate all men to understand that if something doesn't feel right down there, just let us know. A lot of men have not been taught to do testicular self-exam and it's remarkable how little men know about what a normal testicle is supposed to feel like as well. So, those are issues that we as a society have to cross and we have to educate young men about what the testicles are supposed to feel like and about doing a monthly self-exam. The other issues are that sometimes, even without obvious signs or symptoms in the testicles, people can present with issues that relate to advanced disease, things like fatigue or back pain or gynecomastia. A lot of people that are fatigued [and] a lot of people that have back pain assume it's something else, and we have the same masculinity concerns or embarrassment concerns about reporting gynecomastia. So, all these things feed into a potential in delaying diagnosis.
Innovation in medicine is a big deal, right? Technology is improving medicine dramatically in so many ways. Testicular cancer is really one of the poster children for a curable malignancy and, and that's been a long-standing thing. We are getting better and better at curing people, and we’re getting better at curing people with less intensive treatment. We’re minimizing the impact of the treatment on people’s quality of life and assuring a higher likelihood of cure. But, really, for testicular cancer, we’ve been curing people reliably for a long time, so a lot of the innovations are around better communication tools that allow us to get the message out and educate people. I show young men YouTube videos about testicular self-exam, [and] social media has been helpful in getting the word out about self-exam. Social media is really helpful in supporting young men, letting them know that they’re going to be okay, and diminishing that fear about coming in to see the doctor and knowing that they’re likely to be cured and have a normal quality and quantity of life. Ultimately, the availability of some new tumor markers may be very helpful in helping us further diminish the amount of treatment we have to give people to achieve the cure. I hope and expect that innovations in virtual health that have been available but pushed to the forefront with the health care emergency because of the pandemic will be useful in providing access to care by testicular cancer experts for people that would not be able to do so without those tools. Since testicular cancer is so rare, and since we have a problem with health equity across the globe and in the United States, I'm hoping that things like virtual visits, virtual testing, remote diagnostics, including remote blood tests, remote ultrasound, other remote diagnostic tests, [and] even remote physical exam, will be helpful in providing access to people that are experts in testicular cancer, even if they don't happen to be close to you physically and geographically.
Every urologist should be making the rounds, talking to as many people as possible in their local communities about [feeling] the testicles once a month. If you feel something, it's usually nothing to worry about, but you have to let us look into it further for you. You can't just assume it's nothing, and that you shouldn't be fearful. From a body image place, if people are really concerned about the potential loss of a testicle, we have very good testicular prostheses we can put in now. I think we have to educate people about that. I think it's really important to tell people about fertility issues and fact that we do not expect reductions in testosterone levels. [For] every man that I see with testicular lump, I [start off by explaining] to them that testicles do 3 things for them: They help with fertility, they help make testosterone, and they're ornamental. I explain to people that when we remove a testicle, we don't remove the scrotum, and if they have concerns about body image, we can replace the ornamental issue with a testicular prosthesis. I explain to them that men with 1 testicle rarely have issues making a normal amount of testosterone, and normally the amount of testosterone a man will hold steady after surgery. But if people do have issues with low testosterone, or [are] the rare patients that lose both testicles to testicular cancer, or [are] the rare [men that have] testicular cancer and have only 1 testicle to start, we can replace testosterone nowadays very easily. It can be replaced with a long-term implant under the skin, it can be replaced with a gel, it can be replaced with a patch, and we don't have to do the [shots every 2 weeks] that we used to have to do. Testosterone replacement, when necessary, is pretty much seamless.
We always discuss, from a fertility perspective, sperm banking, and we have lots of ways to help men assure that they can maximize their chance of having kids down the road if that's important to them. Getting that sort of educational stuff out is the job of the urologist so that people know that we can help, and it doesn't have to be a quality-of-life issue. In addition to educating young men directly, as I said earlier, we need to educate the primary care providers, so our advanced practice providers, our physician assistants, our nurse practitioners that do primary care, our family medicine docs, the general internal medicine, [and] school nurses all need to be educated about what to look for and what to do if somebody does report something feeling awry with a testicle.
To make sure they really get it, I tell my patients over and over and over again that the expectation is that we cure you and we cure you with normal quality of life. So, the expectation if you are diagnosed with testicular cancer is that we can preserve your quantity and quality of life in the majority of circumstances, and that the majority of the time, if you have a symptom that you think might be related to testicular cancer—fatigue, back pain, gynecomastia, breast enlargement, sensitivity of the breasts, a lump in your testicle—the vast majority of time [it] is not testicular cancer. Testicular cancer is rare, but we have to check it out for you, and we have to make sure. The earlier you do that, the better we can help with the least impact to that person.