Let's Talk Prostates

WPR shared his experience with sleep issues and that inspired me to share my story about prostate cancer and hopefully spark some discussion here about it.

Here's my story: For about the past 3 years or so, was having issues emptying my bladder. Couldn't empty it, was up multiple times a night trying to go, very weak stream. So finally, after a couple of years of this suffering (see, guys don't want to deal with their health!), I went to see a urologist. I knew I had an enlarged prostate based on my past experiences 10-12 years ago and I figured I would need a TURP or equivalent to shrink the prostate from the urethra. Doc wants to do some urodynamic studies (insert some pressure and flow meters in your urethra and a pressure sensor in your butt, fill your bladder with water and then check the pressure in your bladder and the rate to see if your bladder is functioning as you empty the bladder) and get a PSA test since I hadn't had one in a few years (not smart for someone who's had prostate cancer in the family). The urodynamic study indicated that my bladder was functioning just fine but that I had an obstruction due to my enlarged prostate (MRI indicated that one of the lobes was growing into my bladder, essentially blocking the sphincter at the bottom of the bladder from working properly). However, the PSA was 4.9 which is much higher than my normal of 3.2. Doc recommended MRI guided biopsy, where they take an MRI of the prostate, overlay that image on an ultrasound of the prostate and take biopsy specimens based on that.

MRI showed two lesions, one very suspicious for cancer and the other not so much. Biopsy showed that I did have cancer, Gleason score of 3+4 (this is a good site for explaining what Gleason sore means: Gleason Score Explained) with a grade group of 2. 3+4 is favorable for getting cured as it's considered a low grade of cancer. So, time for research. Checked out surgery via robot assisted laparoscopic type, radiation treatments and talked to a few surgeons (mainly to vet my current surgeon). But to a person, all agreed that surgery was the right option, especially with my obstructed bladder. This was back in August and it took through October to finally get all my interviews out of the way. Surgery scheduled for December 8.

Surgery went off without a hitch. Had a one-night stay in the hospital and it took about a week to get to about 80% of normal, which is pretty good for major surgery. I have 6 incisions in my abdomen right now that are well healed (it's for the camera, cutting and cautery and other instruments). Final pathology on my removed prostate confirmed Gleason score of 3+4. No cancer was found outside of the prostate which is excellent news. Had a catheter in for a week and let me tell you, while it's not anything I would sign up for, there is something to not have to go to the bathroom except to empty it (would have come in handy during some heavy drinking sessions in college!). Had some swelling in the scrotum (gravity is the worst for guys and all of the fluids around the bladder after surgery have to go somewhere). Took about 3 or 4 days to start moving around better but all in all, wasn't bad.

6 week follow up showed that my PSA is undetectable so for now, I am cancer free. I need to go back every 3 months for the foreseeable future to get my PSA checked but it's a blood draw that takes a minute. And with no prostate, I am peeing like a racehorse! I haven't gone like this in 25 years! It's awesome! But, I am dealing with two side effects: incontinence and ED. For the incontinence, time will most likely heal it along with me doing kegels. Over the course of a full day, I leak between 100-500 grams. Seems to be random but the more I move around, the worse it seems to be. If it doesn't improve in 6 months or so, they can do some surgical procedures to help that along. So overall, while it's an annoyance and embarrassing to have to wear absorbent pads all day, every day, I'll still take this over what I had.

For ED, they did nerve sparing surgery so even though no nerves were cut, they still underwent some trama due to all the cutting and moving things around down there and that will take some time to heal, up to about 18 months. I take once a day Cialis (generic, as that is only a buck per day) as blood flow to the area will help with healing. I am getting sensation down there so I'm about ready to see what the wife can do! Need to take it slow and most likely change what we do for sexual pleasure but will see. Of course, with no prostate and a vasectomy, orgasms will be dry so this will be interesting to see how this goes. But I'm ready for that challenge! If I cannot get erections very well, surgery can help with this as well.

So, all in all, everything is going great right now. Physically, I feel great and will be able to work through any issues with incontinence and ED. Guys, please don't put off getting a PSA and DRE, especially if you're in a high-risk group (if your father, father's brother(s) and your own brothers have had prostate cancer, you're in the high-risk group or if you're black, you are high-risk). It's only a blood test and a 10 second examination. It could save your life. Most men with prostate cancer won't die from it as long as you monitor it and it doesn't get outside of the prostate.

Sorry for the length, got a bit wordy... Shoot me a DM if you want a private convo or jump in the thread and I'll be happy to answer any questions. Please feel free to add your experiences with this if you feel up to it.

Thanks for sharing that, and I wish you the best in your recovery--especially the ED part .

One of my least favorite things is seeing my doctor pull on the latex glove, but it's so important. Same with colonoscopies-- they're horrible to go through, but I've known a handful of guys who caught issues early enough to avoid going through some horrible treatments.

Ransom Stoddard said:

Thanks for sharing that, and I wish you the best in your recovery--especially the ED part .

One of my least favorite things is seeing my doctor pull on the latex glove, but it's so important. Same with colonoscopies-- they're horrible to go through, but I've known a handful of guys who caught issues early enough to avoid going through some horrible treatments.

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Thanks! With the surgeries to fix incontinence and ED, I will be good either way!

Good point about colonoscopies. Get 'er done! Just had my first one last August at the age of 55 Should have done it sooner, for sure. All clear there!

It's funny, I used to think the same thing about the DREs but I had so many of them from June-October, I just walked in the room, dropped trou and was ready for them! Just kidding of course, but I got used to them since every doctor wanted to do that exam. Now with no prostate, the days of the DRE are gone!

Thanks for sharing. It's interesting how the medical field looks at the PSA score. They have changed their minds a couple of times as to its relevance. My Dad was one of the few who actually died from prostate cancer. It's slow growing for most men. Not him. He had radiation and chemo but it still got him. During this time we learned my grandfather had it as well but was ashamed and didn't want the family to know. (It was the early 60s.) My eldest aunt knew and only after Dad's condition was known that she informed him. Dad's younger brother also had cancer too. Both my uncle and grandfather died from other things. My older brother had some kind of treatment. Not cancer related. So needless to say the men in our family watch this. 0.5 PSA the last two blood tests and about that for the past 20 years. Correct me if I am wrong doctors look more at the movement in the number that the actual number itself. Of course if you are an 8 they are going to be concerned whether it has moved in the past year or not.

bdutts said:

Thanks! With the surgeries to fix incontinence and ED, I will be good either way!

Good point about colonoscopies. Get 'er done! Just had my first one last August at the age of 55 Should have done it sooner, for sure. All clear there!

It's funny, I used to think the same thing about the DREs but I had so many of them from June-October, I just walked in the room, dropped trou and was ready for them! Just kidding of course, but I got used to them since every doctor wanted to do that exam. Now with no prostate, the days of the DRE are gone!

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The way they deal with ED today is a lot different than how they handled it (pun only slightly intended.) 20 years ago for my dad. The procedures weren't what they are today.

I got my first colonoscopy at 55 as well. The dr was a classmate of my younger brother so I've known him a very long time. He and his younger brother are two of the most intelligent men I know. (side bar- his younger brother never graduated from high school. MIT made him an offer early his senior year and he left high school to enroll at MIT.) The dad was a cardiologist and he is a bum dr. I was kidding him when I asked how he decided on that aspect of the human anatomy. After the procedure he told me I was fine and he would see me in 15 years. It kind of surprised me because I thought 10 was the norm. I laughed and told him, "Bet you don't." I am fast approaching the 10 year mark. Darn it.

wpr said:

Thanks for sharing. It's interesting how the medical field looks at the PSA score. They have changed their minds a couple of times as to its relevance. My Dad was one of the few who actually died from prostate cancer. It's slow growing for most men. Not him. He had radiation and chemo but it still got him. During this time we learned my grandfather had it as well but was ashamed and didn't want the family to know. (It was the early 60s.) My eldest aunt knew and only after Dad's condition was known that she informed him. Dad's younger brother also had cancer too. Both my uncle and grandfather died from other things. My older brother had some kind of treatment. Not cancer related. So needless to say the men in our family watch this. 0.5 PSA the last two blood tests and about that for the past 20 years. Correct me if I am wrong doctors look more at the movement in the number that the actual number itself. Of course if you are an 8 they are going to be concerned whether it has moved in the past year or not.

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Sorry to hear that you lost your Dad to it.

You're right, PSA score evaluation has changed quite a bit the past ~20 years or so. I think you're right, they will look to see how it's changed and not necessarily the number. 15 years ago, my score was around 3 which is high for someone that's 40 years old but I had BPH so it wasn't out of the ordinary to have a score like that for my age. So they watch it to see if it changes. For me, my doc did a regular biopsy about 12 years ago just to make sure I was clean (due to family history) and I was clean. But when it jumped from 3.2. to 4.9 last year, something was up.

You have an awesome PSA score, that's great. Hope it stays that way.

wpr said:

The way they deal with ED today is a lot different than how they handled it (pun only slightly intended.) 20 years ago for my dad. The procedures weren't what they are today.

I got my first colonoscopy at 55 as well. The dr was a classmate of my younger brother so I've known him a very long time. He and his younger brother are two of the most intelligent men I know. (side bar- his younger brother never graduated from high school. MIT made him an offer early his senior year and he left high school to enroll at MIT.) The dad was a cardiologist and he is a bum dr. I was kidding him when I asked how he decided on that aspect of the human anatomy. After the procedure he told me I was fine and he would see me in 15 years. It kind of surprised me because I thought 10 was the norm. I laughed and told him, "Bet you don't." I am fast approaching the 10 year mark. Darn it.

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No doubt about the ED part. There is a lot of info about it out in the world. There is a penile implant surgery one can get if meds don't work. One of my best high school friends is in a cover band with a woman who's a nurse at a surgical center and she said the most often performed surgery, by far, is penile implant. Boner on demand is kind of appealing, to be honest. But that's the last resort. I think the ED pills will work but will find out shortly... Just how they deal with prostate cancer is so much advanced in the 15 years since my uncle had his removed due to cancer. It's mind blowing, actually. And now we found out his son has prostate cancer as well. I think it's good for him that I went through what I did. I can coach him along in the process. We'll both get through it together.

Good luck with the follow up colonoscopy. Yeah, 10 years for clean ones, 5 years if they find something and 3 years if you have colon cancer in your family.

I had surgery for prostate cancer back in 2012, had a relapse and 8 weeks of radiation in 2015. I have had consistent 0 on PSA since and had incontinence issues only the first few weeks following my surgery. Good Luck and root on the Illini in the big dance.

bdutts said:

No doubt about the ED part. There is a lot of info about it out in the world. There is a penile implant surgery one can get if meds don't work. One of my best high school friends is in a cover band with a woman who's a nurse at a surgical center and she said the most often performed surgery, by far, is penile implant. Boner on demand is kind of appealing, to be honest. But that's the last resort. I think the ED pills will work but will find out shortly... Just how they deal with prostate cancer is so much advanced in the 15 years since my uncle had his removed due to cancer. It's mind blowing, actually. And now we found out his son has prostate cancer as well. I think it's good for him that I went through what I did. I can coach him along in the process. We'll both get through it together.

Good luck with the follow up colonoscopy. Yeah, 10 years for clean ones, 5 years if they find something and 3 years if you have colon cancer in your family.

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There is also an injection that works very well (VERY small needle lol).

OrangeLife said:

I had surgery for prostate cancer back in 2012, had a relapse and 8 weeks of radiation in 2015. I have had consistent 0 on PSA since and had incontinence issues only the first few weeks following my surgery. Good Luck and root on the Illini in the big dance.

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Glad to hear you are cancer free now. My incontinence is getting better. My doc said that between 6-12 weeks is when guys start to see improvements and I have. Still leaking a bit (between 20-50 grams for the day and more when I'm active or when I drink alcohol) so I'll wear pads until I can get it nearly zero for a stretch.

OrangeLife said:

There is also an injection that works very well (VERY small needle lol).

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I think that's option #2 for me. Tadalafil seems to be working but will have to get with my doc at the end of this year or mid next to determine if the pills are as good as they are going to be. The injections are intriguing, hopefully a very minimal needle stick.

You'll be fine, just keep a good attitude and do your exercises. I still get up once or twice a night for a pit stop, but I'm still here so that is OK.

OrangeLife said:

You'll be fine, just keep a good attitude and do your exercises. I still get up once or twice a night for a pit stop, but I'm still here so that is OK.

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My problem if I get up at night is sometimes it takes an hour to fall back to sleep. Still waiting on my cpap machine. I guess there are insurance issues. I told the supplier I will pay for it and work it out with insurance later. They still wanted to call to check to see if it is covered or not. So I wait.

I have a sleep study scheduled at the insistence of both my wife and my cardiologist. She is threatening to make be sleep in one of dogs crates.

OrangeLife said:

You'll be fine, just keep a good attitude and do your exercises. I still get up once or twice a night for a pit stop, but I'm still here so that is OK.

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Been doing my exercises for 90 consecutive days. Haven’t missed a day since my catheter came out. I get up once or twice a night, too. Sometimes can make it without getting up. Depends on liquid consumption for the day.

bdutts said:

Been doing my exercises for 90 consecutive days. Haven’t missed a day since my catheter came out. I get up once or twice a night, too. Sometimes can make it without getting up. Depends on liquid consumption for the day.

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I try to drink a gallon of water a day. Most of it before noon. A glass every hour or so. By the time I leave work I can slow down. After 8 all that's left is a glass to take my night time pills. I do that around 8-9.

wpr said:

I try to drink a gallon of water a day. Most of it before noon. A glass every hour or so. By the time I leave work I can slow down. After 8 all that's left is a glass to take my night time pills. I do that around 8-9.

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I’d say I max out at half a gallon during the week, Saturday and Sunday are probably closer to a gallon. During the week, I stop drinking anything at about 6 pm. Saturday, I have some drinks so I stop much later.

OrangeLife said:

You'll be fine, just keep a good attitude and do your exercises. I still get up once or twice a night for a pit stop, but I'm still here so that is OK.

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It's been ~5.5 months since surgery. Still cancer free and I get check ups every 3 months for the rest of this year, then once every 6 months for 4 years. After that, if I'm still cancer free, I'll be considered cured and will only require a once per year visit.

Incontinence is much better, less than 20 grams per day but a bit more when I move around a lot. I don't wear a pad at night any longer. Been doing exercises every day since Dec 15th. ED is getting a bit better but is taking longer to see big improvements. Patience is key. I may ask for the injection at the end of the year if things aren't getting much better than it is now.

Good news. Thanks for the share.

Today is one year after surgery. Still cancer free. One year down, four more to go until I am considered cured. Thanks for all the well wishes, prayers, thoughts. Side effects are much better. Slight leaking when I do something physical and ED is much better. Not back to where it was but better than it was 6 months ago. Now it's incremental improvement.

With the year nearly over, it's a good time to make a New Year's Resolution to get yourselves checked out. Guys, get your PSA checked and get a DRE if your doc recommends it. Ladies, get your mammograms and smears done. And everyone 45 years old and over needs to get a colonoscopy. Early detection is key for any type of cancer. Early detection means most likely an easier treatment and a better chance to beat it.

Great news!
Excellent advice.
Here's to a wonderful new year.