Community Views: How Life Has Changed Since Diagnosis

Cancer changes your life. Before a prostate cancer diagnosis, it is hard to imagine the impact it will have. Changes can be both big and small, temporary and long-lasting.

We were curious about how you identify and interpret the changes in your life since diagnosis. We asked followers of our Facebook page to tell us: “What has changed the most since your prostate cancer diagnosis?”

You were incredibly open and honest in your responses. We wanted to share some of what you had to say with the broader community.

Erectile dysfunction

One of the top frustrations you shared is how prostate cancer affects your sex life. Erectile disfunction frequently develops following treatments for prostate cancer. Even if nerves are not damaged, surgery can be traumatic to the area, resulting in changes to erections. The inability to develop or maintain an erection can impact intimate relationships and how you feel about yourself.¹

However, the impact on intimate relationships is not always negative. One response highlighted how a commitment to maintaining sexual health increased intimacy with his partner, while others noted different experiences.

"As a result of the diagnosis and the ensuing surgery, the ability to have an erection is gone. Oh, how I miss having a good erection!"

"No sex life! Pills, pump, injections – nothing works."

"Erections are rare."

“What has changed most is my marital relationship. The time we spent with intimacy to keep me sexually active while on Lupron and maintain my sexual health has given us a whole new intimacy in our marriage. We have had talks that have opened up a whole new understanding of each other.”

Incontinence

Following treatments for prostate cancer, problems with urination can arise. Nerves or muscles often become damaged during treatment. Messages carried by nerves traveling between the bladder and brain telling when to hold and release the bladder can become disrupted. The result of this damage can range from regularly leaking urine to complete loss of bladder control. It can affect quality of life and feel embarrassing.²

"Incontinence sucks."

"Incontinence is still an issue."

"Constant leakage."

Energy level

Another change following a prostate cancer diagnosis is your energy level. Fatigue is a common symptom both of prostate cancer and a treatment side effect. Feeling weary, needing more rest, and having a lack of stamina can impact your activities.³

"Physical stamina is much less than before surgery."

"Energy level is way down."

"Lack of motivation to do anything even when I’m fortunate enough to have a small bit of energy."

Mental and emotional challenges

Along with the physical impacts, many of you shared what a toll prostate cancer and treatments have on your emotional health. Sometimes your emotions feel as though they are on a roller coaster. Prostate cancer can affect your self-confidence and outlook.

When the emotional repercussions weigh heavily on you, take time to reach out for support. Talking with someone you trust or connecting with others online can help relieve the burden.

"Confidence. I just don’t feel like a whole man anymore."

"Peace of mind. Even after good follow-ups, 5 years post-surgery, there’s always that feeling that cancer cells are lurking somewhere."

"I feel I am in a rerun of puberty with the over-the-top emotions that come with Lupron."

We are grateful to everyone who engaged with this prompt and shared a window into your experience. We appreciate your vulnerability showing others know they are not alone.