Lack of education about testicular cancer can lead to delays in diagnosis and treatment that could result in more intense treatment to cure the disease or even jeopardize our chances of recovery. Although testicular cancer is rare, it is a disease providers and patients should always be aware of, says Bradley C. Leibovich, MD, FACS.
In this interview, Leibovich discusses why patients with testicular cancer don’t seek treatment and what urologists can do to make them feel more comfortable raising concerns about their testicles. Leibovich is the David C. Utz Professor of Urology at Mayo Clinic and Medical Director of the Mayo Clinic Center for Digital Health in Rochester, Minnesota.
What are the stigmas surrounding testicular cancer?
I don’t know if I would say there’s a stigma around testicular cancer, actually, because testicular cancer mainly affects young men and there have been prominent athletes who have had cancer of the testicles. Most often, testicular cancer occurs in late adolescence. in the early 30s, but there is a second peak in the 50s and 60s. One of the problems with testicular cancer is delayed diagnosis, as many of these young men have concerns about the body image, masculinity, [and] about it being a reproductive organ they might be embarrassed to talk about. Delays in diagnosis are not good in terms of our ability to treat disease, the longer the delay in diagnosis the more likely a person is to have an advanced stage [disease]. Even though we cure virtually everyone with testicular cancer, the amount of treatment a person needs to get 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 everyone, it is much easier to cure people at an early stage than at a later stage. So again, I’m not sure I would call it stigma, but I think we have a big problem with educating young men about things like testicular self-examination and the fact it’s okay to let us know if you think something is wrong.
What is the impact of these problems related to testicular cancer on the management of patients with this disease?
I think the first thing patients and providers who are not urology providers need to know is that any man who thinks something is wrong with his testicles should see a doctor immediately. One of the problems we have with testicular cancer is that men are aware that there are other causes of testicular swelling or even pain in the testicle, and they will often assume that it is just not have testicular cancer, or don’t even know that testicular cancer is a thing, denial of the possibility of malignancy leads to significant delays in diagnosis and treatment. Testicular cancer is quite rare, with only 8,000 or 10,000 new cases per year in the United States, so the same problem occurs with providers. Most primary care providers won’t see a patient with testicular cancer more than a few times, if ever, in their career, so it’s not something they know about. I think the first thing is to educate all men to understand that if something is wrong there, let us know. Many men have not been taught how to do testicular self-exams and it is remarkable that few men know what a normal testicle looks like. So these are issues that we as a society have to work through and we need to educate young men about what the testicles are supposed to feel like and the need for monthly self-exams. Other issues are that sometimes, even without obvious signs or symptoms in the testicles, people may have issues related to advanced disease, such as fatigue, back pain, or gynecomastia. Lots of tired people [and] many people with back pain assume it’s something else, and we have the same worries about masculinity or embarrassment about reporting gynecomastia. So all of these things feed into a potential for delaying diagnosis.
What are the innovations in this space that have helped manage the quality of life of patients who suffer from this disease?
Innovation in medicine is a big deal, isn’t it? Technology dramatically improves medicine in many ways. Testicular cancer is truly one of the iconic children of a curable and malignant tumor, and it has been going on for a long time. We are getting better and better at curing people, and we are getting better at curing people with less intensive treatments. We minimize the impact of treatment on people’s quality of life and ensure a greater likelihood of recovery. But, really, for testicular cancer, we’ve been reliably curing people 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 on testicular self-examination, [and] social media has been helpful in publicizing the self-examination. Social media is really helpful in supporting young men, letting them know they will be fine and lessening that fear of coming to see the doctor and knowing that they are likely to be cured and have quality and quantity normals of life. Ultimately, the availability of some new tumor markers can be very helpful in helping us to further reduce the amount of treatment we need to give people to get cured. I hope and expect that the virtual health innovations that have been available but brought to the fore with the health care urgency due to the pandemic will be helpful in providing access to care by experts in testicular cancer for people who couldn’t do it without these tools. Since testicular cancer is so rare and we have a health equity issue around the world and in the United States, I hope things like virtual visits, virtual testing, diagnostics at remote, including remote blood tests, remote ultrasound, other remote diagnostic tests, [and] even a remote physical examination will be useful to provide access to people who are experts in testicular cancer, even if they are not physically and geographically close to you.
In your opinion, what is the role of the urologist in destigmatizing testicular cancer?
Every urologist should go around, talk to as many people as possible in their local community about [feeling] the testicles once a month. If you feel something, it’s usually nothing to worry about, but you should let us dig into it for you. You can’t just assume it’s nothing and you shouldn’t be afraid. From a body image perspective, if people are really concerned about the potential loss of a testicle, we have some really good testicular prostheses that we can fit now. I think people need to be educated about this. I think it’s really important to talk to people about fertility issues and the fact that we don’t expect a reduction in testosterone levels. [For] every man I see with a testicular lump, I [start off by explaining] for them that the testicles do 3 things for them: they help with fertility, they help make testosterone and they are ornamental. I explain to people that when you remove a testicle, you don’t remove the scrotum, and if they have body image concerns, you can replace the ornamental issue with a testicular prosthesis. I explain to them that men with 1 testicle rarely have problems making a normal amount of testosterone, and normally the amount of testosterone a man will retain after surgery. But if people have low testosterone issues, or [are] the rare patients who lose both testicles to testicular cancer, or [are] there are [men that have] testicular cancer and having only one testicle to begin with, today we can very easily replace testosterone. 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] what we used to do. Replacing testosterone, if needed, is pretty much seamless.
We always discuss, from a fertility point of view, sperm banks, and we have many ways to help men ensure that they can maximize their chances of having children if it is important to them. . It’s the urologist’s job to deliver this kind of educational information so people know we can help them, 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 primary care providers, so our advanced practice providers, our physician assistants, our nurse practitioners who do primary care, our family medicine physicians, general internal medicine, [and] school nurses should all be told what to look for and what to do if someone reports something wrong with a testicle.
Do you think there is anything else our audience should know about this specific topic?
To make sure they really get it, I tell my patients over and over again that you are expected to be cured and cured with a normal quality of life. So if you are diagnosed with testicular cancer, it is expected that we can preserve your quantity and quality of life in the majority of cases, and that most of the time, if you have a symptom that according to you, could be linked to testicular cancer — fatigue, back pain, gynecomastia, breast enlargement, breast tenderness, lump in the testicle — the vast majority of the time [it] is not testicular cancer. Testicular cancer is rare, but we need to check it for you, and we need to make sure. The sooner you do this, the better we can help with the least possible impact for that person.