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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

  • Seekcure
    4 months ago

    Is there any food that “feeds” cancer, not asking if there is any that causes cancer but does anyone know if there are foods such as ice cream, pizza or fried foods that feeds cancer (prostate) in particular.

  • sarah.wallin moderator
    4 months ago

    Hi @seekcure, You might be interested in this article about the link between BBQ meats and prostate cancer: https://prostatecancer.net/living/bbq-prostate-cancer-risk/. The article talks about how certain cooking techniques could lead to increased carcinogenic compounds. -Sarah (ProstateCancer.net Team Member)

  • gM6hXdRCg4rlVCW8
    6 months ago

    The change in my treatment decision was made because in Dec 2017, I was told that nothing more could be done for me and that I had only between two months and at the outside, two years, “If the drugs work.”

    Sure enough, for the first time, bone mets started up – the worst pain that I have ever experienced.

    Friends kept telling me to try ‘The Alternative’ and in August, after some resistance, I did. Since then, it has been variable and I’ve learned a lot about the treatment and why it works.

    Does it cure me? Well in terms of ‘curing cancer’, actually, nothing can! As long as the reason for the cancer starting up in the first place still persists, you will always be waiting for those cells to begin to be produced again, or dormant ones to activate.

    ‘The Alternative’ causes apoptosis in cancer cells via the ECS and so tumours are killed, however, as I just said, the cancer isn’t gone , just severely compromised – it will come back if you stop the treatment. I do still use the conventional hormone control therapies, Zytiga & Prostap.

    Bottom line? Do you want to live with the side-effects of the treatment you are having? Do you want to suffer the deep pain of bone mets? You’ll get mets, but they won’t last long, or hurt anywhere near so badly. “Yes, but what’s it really like for you?” I’m over 60, unless I bang, or twist a bone with a met in it, or unless I’m concerned about my urine flow, or some other ‘older peoples’ issues, I am ’35’. I do suffer from some side effects of the conventional medicine, of course.

    This decision was made because conventional medicine actually and officially gave up on me – there were no further options on the table, just waiting for a painful death.

    It is easy to say that you want to choose one thing over another before you actually have to face that choice, but in fact, you will end up doing that which you can actually face up to.

    There is no quick exit with Prostate cancer – it’s going to take you in its own sweet time. In my case, I’m holding back a raging torrent and so, were I to let off treatment, I guess I’d only have to scream and moan for a few weeks, as opposed to longer if it weren’t so advanced.

    If this post seems hard, then good – I see too many posts from people who have not yet experienced the end-game of this disease and trust me, sex will be the last thing on your mind. Hopefully, people will get scared enough of this to have those tests done early and regularly. For those of us that have it, we have to formulate our own strategies to cope and so all we can do is to try to deflect others from this path.

  • ninaw moderator
    6 months ago

    @gM6hXdRCg4rlVCW8, I appreciate your post and your honesty about the realities of what you’re dealing with. Like many Stage IV folks we’ve heard from, it sounds like less of a battle and more of a day to day journey. We need people at all different stages and situations to share what it’s like. That way, as you say, men can choose a path based on that experience. Please continue to post, we appreciate you being here! In case you haven’t seen it, you can find the latest activity in the community here: https://prostatecancer.net/community/. – Nina, ProstateCancer.net Team

  • Will Jones moderator
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months 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
    7 months 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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