Community Views: What People with Prostate Cancer Wish Others Knew

The effects of prostate cancer often are unexpected and take time to get used to. Many people in the community have found that their friends, family members, and coworkers had little understanding of the many ways this disease changes lives.

To find out more about the effects, we reached out to followers of our Facebook page. We asked community members to tell us: “What do you wish others knew about living with prostate cancer?”

More than 50 people answered. Here is a look at what was shared.

It takes an emotional toll

Many in the community shared that they did not expect to be affected so emotionally by this diagnosis. Fear, stress, guilt, anxiety, and depression are common emotions while on this journey. Several community members also shared that they experienced more sadness than they did before they were diagnosed.

For coworkers, family, and friends of someone living with prostate cancer, it can help to show as much emotional support as possible. That may look like offering to listen or simply reminding them that you are willing to offer support of any kind.

"How emotions enter into the picture. They may see a side of someone they are not used to!"

"Almost a year since surgery, and I am still hurting emotionally despite being successful."

"No one in the medical system prepared me for the emotional part."

"This comment about emotions is so true, especially with Lupron therapy. We now have a cat and a dog because my husband could not bear to not save them."

That it is not a "good" cancer

Too often, coworkers, friends, and family may not know what to say after someone they know and love has been diagnosed with prostate cancer. In an attempt to be nice or offer comfort, they may call prostate cancer a 'good' cancer. This is not a helpful thing to say. There is no such thing as a 'good' cancer. Cancer is scary and throws many people’s lives upside down. Instead, it would be kinder if people acknowledged how stressful and challenging it is to have any kind of cancer.

"It is not the 'good cancer.' I wish people would quit saying, 'At least you got the good cancer.'"

"That in terms of cancers, it is really just a slow death."

"Please take it seriously. Do not just say, 'Oh, thankfully it is just prostate cancer.'"

The long-term effects are challenging

The conversation about prostate cancer typically focuses on how to get through treatments. There is not much talk about the 'after' until it is already there. Some men experience long-term side effects that greatly impact day-to-day life. Granted, while it is great to survive the cancer treatments, it is a whole new challenge to learn how to handle problems that can affect so much of daily life.

"The long-term effects after treatment (surgery and/or radiation) just plain suck! Incontinence and ED are no fun."

"How you always have to know where the bathrooms are."

This disease affects every part of your life

It is so common to focus on the physical side of a disease like prostate cancer. However, its effects are far more widespread. Many community members said it affects their moods and mental well-being as well.

"How the treatments take a toll on your mind, body, and manhood."

"It is a stealthy yet silent thief that steals your life's passions and dignity before thieving your mind, body, and soul."

Thank you to everyone who shared their experiences for this story. We appreciate your willingness to be part of this community and help others on the same journey.