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Man lowering a bucket into a deep well, while a monster lurks below the ground

The Things They Don’t Tell You About Prostate Cancer

Eight years ago this month my prostate cancer treatment was starting to turn from an idea into a plan. On the way things happened that hadn’t been mentioned or discussed, so I thought I’d try to list them to help those following on a similar path.

More exams, biopsies, and scans

That first digital rectal exam won’t be the last time things go up there. You may have a transrectal biopsy, in which case a broom handle-type device with needles that shootout and go into your prostate will be inserted and deployed. Yes, your prostate becomes a shooting gallery for half an hour. It’s slightly painful and your semen may be blood-stained for a few days afterward.

I had a new type of scanner under trial put up there too. Another broom-handle, it whirred while it took pictures. A sort of radar up the backside. Not painful and no after effects. I don’t think I saw the pictures.

The pain I wasn’t prepared for…

Whatever your treatment type there’s a level of risk that your erections will be permanently affected. Of course I’d been told about this, but not the way it’d make me feel. I can remember well the day I was told that surgery was my only option, and I already knew the impact this would have, so think of being hit around the head with a shovel, hard and you may come close. All this time later I suspect I’m still grieving sometimes.

As with childbirth, they don’t tell you about the pain after surgery. I had spasms as my really quite sore bladder was having a good try at ejecting the catheter and particularly the balloon keeping it in place. These lasted about twenty-four hours and were really quite unpleasant. Back to my rectum again, as I had a suppository inserted there for pain relief.

Walking after surgery wasn’t impossible, but until you’ve had abdominal surgery you don’t realize how much your abdominal muscles do until someone cuts a two inch slot in them. It’s sore and you become tired quickly. Reaching up will be uncomfortable too, as you are trying to stretch muscles that are healing. I’m pretty sure that while my abs have returned to a good strength they have lost more of their elasticity than you’d expect just through aging.

Changes in urination

You are given lots of warnings about changes in urination. I’ve never had an issue with continence but sometimes it’s getting started that seems to be the problem. On rare occasions, it’s been really painful to get started too, though eventually, I get a good flow. I also seem to find that even if I’ve been careful about fluid intake in the evening I still get up twice most nights, but only to urinate really quite small amounts, despite a strong sensation that I need to go. I’m becoming pretty good at falling asleep again, but it’s not ideal.

All of these come under the heading of side effects. I’d rather not have them but for the fact that surgery has given me one more side effect – life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Stephen1
    1 month ago

    Do anyone have opinions on Dr. Songs prostate treatments in china?

  • Tmundo
    1 month ago

    My situation is much like yours. However as much as I appreciate the side effect of life, I live in fear and rarely go out. This is barely living and I’m not comfortable being around others or seeking help.
    It’s been two years since surgery, radiation and hormone therapy and feel no improvement.
    i would like to hear more positive stories to give me some hope. Thank you all

  • Will Jones moderator
    1 month ago

    @tmundo, I had surgery in April 2018 and my PSA has remained low since then. Side effects are part of my life but not limiting in any big way. I made a conscious decision soon after my surgery to get back to normal activity as soon as possible, despite dealing with incontinence (which has since improved dramatically) and the awkwardness that came with it. Now I’m back to doing all the things I did before my diagnosis. Support came from my family, my friends and my prostate cancer support group. Our experience can be overwhelming and fear is certainly part of it. One suggestion would be to just do one thing to move you toward more participation in life. Ease your way back out there, one action at a time. It may help you to gain the confidence you need to conquer fear and begin enjoying life again. Best wishes, Will

  • ninaw moderator
    1 month ago

    @Tmundo, know you’re not the only one dealing with isolation as a result of all the side effects and treatments. While I will share some articles with you from folks who’ve found largely optimistic outlooks, it’s important to also acknowledge that these authors have also had (sometimes long) periods of depression and anxiety. I’m sharing this link to all of Dan Cole’s articles: https://prostatecancer.net/community-advocates/dan-cole/ and all of Todd Seal’s articles: https://prostatecancer.net/community-advocates/todd-seals/.

    I also wanted to share this general article on the mental effects of PCa: https://prostatecancer.net/living-coping/social-isolation/.

    Stay in touch and feel free to comment to other folks you find here. This is one place you can see the latest comments: https://prostatecancer.net/community/.

    Best,
    Nina, ProstateCancer.net Team

  • Potsy112
    1 month ago

    Amen to this! I to think about the fact that I have fairly significant Erectile Dysfunction issues even after trying pills and a pump.
    I do have incontinence issues and have to wear Depends.
    Finally I do have to get up a minimum of twice a night to go to bathroom.
    But I’m alive! Had Surgery in 2006 and had Prostate removed and Cancer came back in 2016 and I had 39 radiation treatments.
    Now a 2 time survivor and I AM ALIVE!!!

  • ninaw moderator
    1 month ago

    @Potsy112, first wanted to say thank you for all your comments and encouragement! I also wanted to let you know about our Stories feature in case you’d be interested in commenting there too or submitting your own story there. Here’s the link: https://prostatecancer.net/stories/.

    Curious if you’ve had any communication with any pelvic floor therapists or physical therapists for the incontinence and maybe the ED too? I know the availability varies depending on where you live.

    Great to hear from you!

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • Potsy112
    1 month ago

    I did in 2006 when I had Prostate removed. It helped quite a bit from where I was but still have issues that never went away. But it’s ok because I’m alive and when they removed the prostate it was all cancer but fortunately it hadn’t spread to surrounding tissue. Caught it just in time.
    😁 I’m Alive! 😁

  • harr0812
    2 months ago

    I was diagnosed may 2016 with stage 4 prostate cancer. My Gleason score was 8 . My PSA was 100. It had spread to a lymph node in my hip. I was treated with radiation chemo and hormone therapy. I am now cancer free however the side effects are tearing me up weight gain ED (viagra helps) no urge or desire for sex . muscles are soft now . Chest gas softened up . I am alive if you want to call it that. Hot flashes anemic ,high cholesteral ,pre diabetic ,high blood pressure . I’m only 54 yrs old . I still work out 3 days a week I chose a natural remedy for a lot of those ailments diet along with natural foods has hekped . At my highest I was 305lbs I am now as of yesterday a slim 288 :-0 . I am in it to win it!! PSA is 0.39

  • Potsy112
    1 month ago

    Keep fighting! I was 1st diagnosed when I was 49. Had Prostate removed. Luckily it hadn’t spread because whole thing was cancerous. 10 years later Cancer came back and had 39 radiation treatments. So far I’m cancer free for 3 years.
    I to have ED issues and don’t even think about sex. But I’m alive! That’s what counts!
    Keep fighting!

  • Will Jones moderator
    2 months ago

    Thanks for sharing your experience @harr0812. While my journey has been different, I share and admire your “I am in it to win it!” attitude. Best wishes and please keep us up-to-date on your progress!

  • Peter55
    3 months ago

    Nearly 12 months post radical prostatectomy now. I’m almost 100% continent and achieving good flow! Still get the “urgents” at times though.
    Viagra is achieving ok erections 💁🏻‍♂️ but no spontaneous ones. But something is better than nothing 😳
    Overall I’m feeling pretty normal now and my latest PSA was “non detectable”.

  • ninaw moderator
    3 months ago

    @Peter55, very glad to hear you’re doing pretty well with continence! Urgency is something quite a few folks have mentioned lately. I haven’t hard any particularly magical tips, but one person mentioned bladder training. Have you ever been offered this?

    The spontaneity is another thing folks have mentioned before. As one of our advocates Will says, it’s about embracing the “new normal.” Although, if you’ve had nerve sparing surgery, there’s perhaps a chance for further improvement still. Sharing one of his articles about the progress made and hope vs. expectation: https://prostatecancer.net/living/hope-expectation/.

    Finally, what a relief to hear PSA undetectable! I hope that continues to be the case in all further PSAs!

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • Will Jones moderator
    2 months ago

    Thanks for sharing your update, @peter55, , we are in a similar place in our recovery. And thanks to Nina for referencing my article. Seventeen months after surgery my continence issues continue to improve. Watch for a new article I’ll soon by submitting, “Incontinence and Exercise: High Altitude Challenge.” Congratulations on “non detectable!”

  • poellnif
    4 months ago

    The incident of prostate cancer is different for Black and White men. Roughly 1 in 8 White men will get prostate cancer. The number increases to 1 in 4 for Black men. This significant statistical difference is almost never mentioned.

    For African American who have a close relative who has had prostate cancer, the likelyhood of another close relative getting prostate cancer increases from 1 in 4 to 2 in 3. As someone whose prostate cancer is in remission, I try to share these numbers with as many people as possible.

    Besides getting an annual PSA blood test, I also urge men of any ethnicity to get an annual medical check up.

  • Potsy112
    1 month ago

    I to constantly share my story and advocate for men to get tested as recommended by their doctor’s. I would like to see the day that Prostate Cancer is universally recognized like Breast Cancer is. Cancer as a whole stinks but I want men to stop being to embarrassed to get tests done!

  • ninaw moderator
    4 months ago

    @poellnif, thanks for bringing this up. It’s something a lot of our advocates have been frustrated about – there’s not enough education about prostate cancer in general, and especially the higher incidence for Black men. Our sexual health author, Dr. Nick, has talked about this in some of his articles here: https://prostatecancer.net/author/nick-myers/.

    Best to you and keep on spreading the message!

    – Nina, ProstateCancer.net Team
    Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

  • kevin
    6 months ago

    Does anybody have any information about the new radiation procedure called cyber knife

  • BIGt
    8 months ago

    Thank you for being unselfish with your time and demonstration of kindness.

  • sevensix
    9 months ago

    Robotic surgery 8-16 I acted as if nothing happened, there was never pain at any time although the analgesic bolus was mildly uncomfortable for a few hours. Not too bad. Recurrent cancer 8-18 with IMRT 60 Gy fractionated 39 days with Lupron and Casodex deprivation. Lupron is a mean animal. I’m 2 1/2 months post IMRT feeling ill, no energy, executive (bozo) malfunctioning. And MS contributes to my malady. Not happy, not fun. First PSA next month.
    I look in the mirror and some of me is missing.

  • BIGt
    8 months ago

    God Speed Brother.

  • Zzzippy
    9 months ago

    When the dr first told me i had cancer he asked if i had any questions… well i was new at this and really had no idea of what questions to ask…. So i said to him… i need the answers to questions i should soon know about shortly… through that open ended statement he did inform me of what i needed… the important stuff.. otherwise i had no idea what i needed to know about my cancer..

  • rwmj123
    9 months ago

    Thank you for sharing your story/experience. My consult for robotic prostectomy is the 6th of March, presumably soon followed by the procedure. It is good to know what you dealt with and are still to allow me not to be too overwhelmed…as if I’m not already..,with what are some things to expect. I am so terrified. But, like you, I want more “life.” Thank you. God Bless…

  • Potsy112
    1 month ago

    God Speed my friend!
    Keep fighting!

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