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The Journey Continues: Life After Prostate Cancer

People rarely realize the long-term impact of prostate cancer until it happens to them. Results from our 2019 In America survey revealed how prostate cancer and its side effects can have a lasting impact on quality of life and mental health, months and years after treatment is over.

How did you choose your treatment?

The top treatment decision factors were efficacy (38%), potential side effects (28%), and recommendations from a friend or family member (20%). In addition to the standard treatments, people also incorporated alternative and/or adjunct therapies such as vitamins and supplements, erectile dysfunction drugs, and exercise into treatment. 62% reported feeling their prostate cancer was controlled on their current treatment plan.

Respondents used surgery (57%), radiation (51%), hormone therapy (44%), active surveillance (39%) and chemotherapy (11%)

The side effects persist

Treatment can take a heavy toll, both physically and emotionally. Even when the worst of treatment is over, side effects may persist. Many of the side effects people reported are discussed daily in the ProstateCancer.net community, especially sexual and urinary side effects and fatigue.

Respondents reported erectile dysfunction (55%), urinating more frequently (40%), fatigue (39%), sudden urge to urinate (34%)

Changes in your sex life

Some of the most difficult side effects to confront are the ones that change your sexual health and 84% of men said their prostate cancer affected their sexual health and intimacy.

From erectile dysfunction to leaking to libido, prostate cancer can make it difficult to stay confident and sexually active. It can also be stressful to figure out how to communicate with partners around symptoms and any lack of desire.

Sex life satisfaction reported as: not at all (65%), a little bit (10%), somewhat (15%), quite a bit (6%), very much (4%)

Will I regret my treatment choice?

Treatment regret can wreak havoc on mental health. While more than half said they do not experience treatment regret, those who do feel regret often express their frustrations in the community.

The biggest regrets around prostate cancer treatment included general side effects, erectile dysfunction, incontinence, impact on sex life, and having chosen radiation. Regrets also surfaced from being uninformed about side effects during the decision-making process.

After treatment, men felt no regret (67%), neutral (20%), regret (13%) about their treatment choice.

Self-esteem and confidence take a hit

Given the nature of prostate cancer side effects, it’s no surprise that self-esteem and confidence can take a hit. 48% of respondents’ self-esteem and confidence stayed the same, while 40% of respondents experienced a negative impact on their self-esteem. Those who felt the negative impact also expressed worrying about the future, experiencing depression, and not feeling like a “real man” anymore.

Self-esteem/confidence %: much more negative (9), more negative (31), same (48), more positive (8), much more positive (4)

The power of hope and acceptance

Through the darkest times, many of our most dedicated community members remind us that there’s hope. Accepting a diagnosis looks different for each person, and it can be a powerful step to moving forward.

Despite the emotional and physical challenges, 71% accepted their diagnosis and 85% have not lost hope in the fight.

Prostate cancer’s lasting effect

Prostate cancer doesn’t end with treatment. In many ways, it only just begins. The longer men live with the effects of prostate cancer the harder it can be to cope with side effects, life changes, and find support.

Those who received their diagnosis in the past 2 years were less likely to regret their treatment decision and more likely to seek out support from family, friends, or other resources. In contrast, those who were diagnosed more than 5 years ago were more likely to regret their treatment choice and less likely to receive support or use other resources for help.

The side effects of prostate cancer can far outlast the cancer itself. That’s why it’s important to prioritize your own care continuously no matter where you are in your journey.

How does your treatment journey compare? Tell your story.

The Prostate Cancer In America 2019 survey was conducted online from September 2018 through January of 2019. Of the 1,162 people who completed the survey, 1,162 were people who have been diagnosed with prostate cancer.

Comments

  • Will Jones moderator
    6 days ago

    I agree with Len’s comments about intimacy. So many satisfying ways to remain intimate even if a full erection isn’t one of them. If, at any given time, I focus too much on one aspect of my life that may not be perfect, I’m ignoring the simple truth that I have a life better than anything I dreamed of in my youth. Even prostate cancer, and its side effects, can’t change that. If anything, I have even more gratitude for all the gifts in my life, especially my family, my friends and my overall good health. Will Jones Moderator

  • kenneth1955
    1 week ago

    I have been reading all this stuff about Prostate Cancer and the treatment that you have to have and the side effects you have to deal with and you have to change you life to suit the cancer. WHY.

    What if you decide that you are not going to do anything and just let it run its course. I have already made up my mind that if I get cancer of the prostate. If they can’t just get the tumor out and give me a guarantee of no side effects. It will stay there until I die

    I feel that my sex life and my ejaculation is just as important has the cancer. Why should I have to give up one for another. That is not right. You may be saving my life with getting the cancer out but you are then killing me in other ways. And I will not live like that. I am going out with a bang

  • Len Smith moderator
    1 week ago

    I’m surprised that 20% relied on a friend or family member’s recommendation to make their treatment decision (and I’m willing to bet almost none of those friends have MD after their name). Doing this is for the most part relying on one person’s experience, possibly 2, with that doctor or doctors. I had strong recommendations from two friends for the same surgeon who did both their prostatectomies. When my urologist recommended two other surgeons, I asked him about my friends’ surgeon. And he said he’d seen mixed results from that surgeon, so, since my urologist had seen a few hundred surgical results from those 3 surgeons, I went with one of his recommendations and got great results. So that is why I rely on my physician’s recommendation, not a friend unless they say such and such has a terrible bedside manner. Len Smith ProstateCancer.net Moderator PS – and the interesting thing about the above story is one of the two friends was furious I didn’t take his recommendation.

  • Richard Faust moderator
    1 week ago

    Hi Len. The stats on how men made their treatment decisions jumped out at me also. I haven’t seen the actual wording of the question or study design, but one thing I wondered was whether people could choose only one or more than one response. I noticed that the three responses mentioned (efficacy, potential side effects, and recommendations from a friend or family member) totaled 86%. I suspect there were other options, so this high total made me think people might have been able to choose more than one option as a factor in choosing a treatment. If this was the case, this can lead to a different outcome than if people are asked to choose one most influential factor. Also curious if doctor’s recommendation was one of the available choices, since it didn’t make the top three results. Best, Richard (ProstateCancer.net Team)

  • Len Smith moderator
    1 week ago

    Excellent article, especially for someone who is enamored with statistics. For a guy who is 31 days shy of his 75th birthday, I’d just like to comment on most men’s idea of intimacy, which the article notes is reduced or lost for a lot of guys. For most men, intimacy means having their orgasm, which somehow translates to being totally intimate with your partner. Even at my worst at having orgasms after my surgery and radiation, or more appropriately, not having them, my wife and I still had wonderful intimacy. And two weeks ago marked our 29th anniversary of when we started to date. And I still get extreme pleasure when she has an orgasm, even if I don’t. (And she sure doesn’t complain about having one. 😅)

  • kenneth1955
    1 week ago

    Len. I am very happy for you and your wife and yes they are other ways to be intimacy. I did that many years ago when I was married. Has long as she was happy. I just rolled over and went to sleep.

    But right now I am 63 and I do not have prostate cancer but I have to get check. I have already told my doctor that we can stop anytime because if I do get cancer I will not have anything done. I will not have any surgery.

    I’m going out with what I came in with. It is my choice and not ones else. Keep going for as long as you can and god bless

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