Prostate cancer’s impact can run deep and go well beyond the physical challenges associated with this cancer.
Research from 2020 shows that many people with prostate cancer experience stigma and shame.
Some view the disease as “an emasculating journey,” while others are reluctant to speak about their concerns or a diagnosis in their homes and communities. This may be due to cultural or religious expectations around keeping such matters private.
Erasing the stigma and shame surrounding prostate cancer is crucial, though. Here’s how experts recommend dealing with stigma and where to go for support.
Prostate cancer stigma can come in many forms. It can also lead to a barrier to self-disclosure.
“The biggest stigma I believe men have when diagnosed with prostate cancer is the perception of diminished or damaged masculinity,” says Russel Z. Szmulewitz, MD, associate professor of medicine and director of the genitourinary oncology program at the University of Chicago.
“Men don’t know much about prostate health, but the association is that it is linked to sexual health. The diagnosis, therefore, comes with the stigma of impaired sexual health,” says Szmulewitz.
The stigma of impaired sexual health, in particular, can lead men to avoid screening for prostate cancer, Szmulewitz explains. Some even refuse lifesaving or life-prolonging treatment due to sexual health implications, which can potentially include blood in semen and penile shortening.
Others may seek suboptimal, less-effective treatment options with the hope of preserving sexual function.
Dr. Murugesan Manoharan, chief of urologic oncologic surgery at the Miami Cancer Institute, says prostate cancer stigma can affect all corners of one’s life.
“This results in internalization of stigma that negatively affects self-esteem, self-image, and personal relationships with others,” he says.
It can also increase social isolation or spark feelings of self-blame and depression, Manoharan adds.
Many men face stigma and shame over prostate cancer’s effects on urinary function as well, as some treatments result in urinary problems such as incontinence. There is additional stigma surrounding medical examinations, too.
“There is a stigma associated with the digital rectal examination that is performed to feel the prostate,” says Kelvin A. Moses, PhD, FACS, associate professor and fellow director of urologic oncology at Vanderbilt University Medical Center. “Men don’t like the idea of this, and may feel that this is a threat to their masculinity or sexuality.”
Moses adds that stigma can occur “when men get a biopsy, which is frequently performed through the rectum, but is increasingly done through the skin between the anus and scrotum.”
The mental health implications of prostate cancer stigma can be serious.
Moses says these feelings can come with a risk of depression or suicide, so it’s essential for people to speak up to their healthcare professionals if they experience them.
“Treatments for prostate cancer can be devastating mentally and functionally for some men,” he explains.
The solution, Moses believes, is building awareness.
“The key to reducing the stigma around prostate cancer is education for patients and physicians, setting reasonable expectations, and understanding the options of management for side effects and complications,” he says.
Szmulewitz agrees that overcoming stigma starts with education and open dialogue.
“As a community, we need wives, sisters, and daughters to encourage the men in their lives to talk more regularly about prostate health and prostate cancer,” he says, “specifically with their doctors and with their immediate support communities.”
Yet the biggest impact, Szmulewitz says, can stem from men talking with other men, which can help destigmatize prostate cancer.
“Men who have had prostate exams need to tell their sons, brothers, friends, and cousins about it and why, despite the stigma, they felt compelled to do so,” he says.
Support groups and the opportunity to talk with others with prostate cancer can be an effective way to cope with stigma or the overall treatment journey, Manoharan says.
You can check with your local hospital for prostate cancer support groups. There may also be support groups on Facebook.
The Prostate Cancer Foundation has an extensive list of support group resources as well.
To get support privately, you can also consider working with a licensed mental health therapist to address any depression, anxiety, or feelings of shame that occur as a result of prostate cancer. Many mental health professionals now offer virtual appointments, which may appeal to some people.
It’s important to maintain or build a social network as well during this time. Maintaining positive relationships with friends, family, partners, or neighbors can help alleviate any feelings of social or self-isolation.
Lastly, don’t forget to support yourself. It’s OK to take time as needed to take care of you and your needs, whether that means doing something you love, taking a break from social media, or resting.
Bringing down barriers can encourage more people to do preventive screening, get treatment, and even build awareness about prostate cancer, particularly within marginalized communities at a higher risk of developing the disease.
Recognizing the stigma surrounding prostate cancer is the first step. Finding ways to overcome it is next in line. Keeping an open line of communication is necessary for fighting back against the unfair stigma.
Of course, this isn’t to say you need to speak openly about your diagnosis with every person in your life.
But the more you talk about your experience — whether with trusted family and friends or others who’ve been diagnosed with prostate cancer — the less chance the stigma will persist.
With open dialogue, communication, and support, the stigma surrounding prostate cancer can be erased. Building communities and fostering connections are also key to reducing shame.
If you or someone you love is facing the stigma of prostate cancer, consider joining a support group, speaking with a medical professional, or simply encouraging conversations about your diagnosis in your own home.