Community Views: The Most Frustrating Thing About Prostate Cancer

Adjusting to life with prostate cancer certainly takes some time. The consequences of this diagnosis and its treatments can be physically and emotionally taxing.

To learn more about the biggest challenges our community members are learning to cope with, we reached out to followers of our Facebook page. We asked members to share by filling in the blank: “The most frustrating thing about my prostate cancer is _________.”

More than 140 community members responded. Here is what was said.

Limiting or ending the ability to have sex

Many of the common prostate cancer treatments can cause erectile dysfunction and other sexual side effects. This includes treatments like radiation, surgery, and hormone therapy. Side effects like pain during sex, decreased libido, and weaker orgasms can affect your quality of life, self-esteem, and relationship with your partner. It is no wonder that many community members mentioned this as one of the most frustrating aspects of their journey.
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“11 years later...ED is the winner.”

“No physical intimacy anymore.”

“Sex.”

Dealing with urinary incontinence

For men who have had radiation treatments or surgery for their prostate cancer, urinary incontinence can be an issue. The degree of this problem can vary from just a small amount of dribbling to what is called stress incontinence. This is when a bit of urine escapes during a sneeze, laugh, or cough. For others, this issue causes you to go to the bathroom more often. This is a common problem and something to discuss with your doctor prior to treatment so you know what to possibly expect.

“Inconvenient to use diapers, and I worry about leakage and accidents.”

“Incontinence.”

“Frequent bathroom trips.”

Feeling extremely tired

Men living with prostate cancer feel a new level of fatigue – one that does not go away after a good night or 2 of sleep. Some men have noticed that the fatigue shows up as a lack of motivation to complete daily work and activities. Feeling this tired can also affect your daily mood. Some men find that taking on more physical movement – even just a short walk a day – can help fight fatigue. If you find this issue is ongoing, it is worth discussing it with your doctor.

“My only big issue at this point is extreme fatigue.”

“Lack of energy.”

“No energy.”

“Killed my workout ethic and drive.”

Waiting for further treatment

One of the toughest parts is waiting for the next course of treatment. It is uncomfortable to sit with the uncertainty of what your body is doing between treatments or how it will respond to the next treatment. In most cases, we want solutions, and we want them as soon as possible. Unfortunately, that cannot always happen when it comes to prostate cancer. For those who are feeling anxious, it can help to remind yourself that you have done all you can for today, and there is nothing further you need to do.

“The toughest part is waiting for further treatment. I guess it is a waiting game until it changes and I start radiation treatments.”

“The waiting game.”

“Waiting!”

Thank you to everyone who shared. It is always helpful to hear from so many community members.